Health and Social Development, Faculty of (Okanagan)
Nursing, School of (Okanagan)
DSpace
UBCO
Parker, Heidi Louise
Master of Science in Nursing - MSN
University of British Columbia
In 2016, Medical Assistance in Dying (MAiD) became legal in Canada. Since that time, nurses have played a unique role in the processes of MAiD. From initial patient inquiries, all the way through to a patient’s death, nurses require complex communication skills to navigate conversations with patients and families. Despite these conversations being difficult for nurses, little research has been completed on this topic. In this qualitative study, I used Interpretive Description to answer the question, “How do nurses describe their communicative practices related to MAiD in Canada?” To do this, I completed a secondary analysis of 42 interviews with nurses in Canada in the years following the legalization of MAiD. I looked at how nurses described their communicative practices, what challenges nurses faced, and what is needed moving forward as more Canadians seek out MAiD. The findings from this study revealed that nurses are involved in conversations that are unique to the MAiD context. Nurses face challenges in knowing how to respond to inquiries while abiding by the law and organizational policies. Nurses must have frank conversations about suffering and death while also educating patients about MAiD provisions. Where possible, nurses stay in touch with patients and continue to educate them about what is to come. Nurses have had to learn how to communicate during a new type of death. Finally, nurses stay in touch with families to provide support during the bereavement period. This research suggests that, while nurses have developed strategies to communicate about MAiD in meaningful ways, challenges persist. This research provides recommendations for practice, education, and research. First, it is recommended that regulatory bodies or employers create guidelines to support nurses in communicating about MAiD. It is also recommended that further formalized education be developed that focuses specifically on communication and MAiD. Finally, it is recommended that additional research be completed to learn more about nurses’ current communicative practices and gain a better understanding of how nurses address challenging situations unique to MAiD. By implementing these recommendations, it is hoped that the uncertainty that nurses feel as they support patients through MAiD can be reduced.
NURSES’ COMMUNICATIVE PRACTICES RELATED TO MEDICAL ASSISTANCE IN DYING (MAiD) by Heidi Louise Parker BScN, The University of Toronto, 2017 MT, The University of Toronto, 2013 BSc, Queen’s University, 2011 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE COLLEGE OF GRADUATE STUDIES THE UNIVERSITY OF BRITISH COLUMBIA (Okanagan) June 2024 © Heidi Louise Parker, 2024 ii The following individuals certify that they have read, and recommend to the College of Graduate Studies for acceptance, a thesis entitled: NURSES’ COMMUNICATIVE PRACTICES RELATED TO MEDICAL ASSISTANCE IN DYING (MAiD) submitted by Heidi Louise Parker in partial fulfillment of the requirements of the degree of Master of Science in Nursing . Dr. Barbara Pesut, Faculty of Health and Social Development, UBC Okanagan Supervisor Dr. Sally Thorne, Faculty of Applied Science, UBC Vancouver Supervisory Committee Member Dr. Anita Chaudhuri, Faculty of Creative and Critical Studies, UBC Okanagan Supervisory Committee Member Dr. Robert Godin, Faculty of Science, UBC Okanagan University Examiner Dr. Christine McPherson, Faculty of Health Sciences, University of Ottawa External Examiner iii Abstract In 2016, Medical Assistance in Dying (MAiD) became legal in Canada. Since that time, nurses have played a unique role in the processes of MAiD. From initial patient inquiries, all the way through to a patient’s death, nurses require complex communication skills to navigate conversations with patients and families. Despite these conversations being difficult for nurses, little research has been completed on this topic. In this qualitative study, I used Interpretive Description to answer the question, “How do nurses describe their communicative practices related to MAiD in Canada?” To do this, I completed a secondary analysis of 42 interviews with nurses in Canada in the years following the legalization of MAiD. I looked at how nurses described their communicative practices, what challenges nurses faced, and what is needed moving forward as more Canadians seek out MAiD. The findings from this study revealed that nurses are involved in conversations that are unique to the MAiD context. Nurses face challenges in knowing how to respond to inquiries while abiding by the law and organizational policies. Nurses must have frank conversations about suffering and death while also educating patients about MAiD provisions. Where possible, nurses stay in touch with patients and continue to educate them about what is to come. Nurses have had to learn how to communicate during a new type of death. Finally, nurses stay in touch with families to provide support during the bereavement period. This research suggests that, while nurses have developed strategies to communicate about MAiD in meaningful ways, challenges persist. This research provides recommendations for practice, education, and research. First, it is recommended that regulatory bodies or employers create guidelines to support nurses in communicating about MAiD. It is also recommended that further formalized education be developed that focuses specifically on communication and MAiD. Finally, it is recommended that additional research be completed to learn more about nurses’ current communicative practices and gain a better understanding of how nurses address challenging situations unique to MAiD. By implementing these recommendations, it is hoped that the uncertainty that nurses feel as they support patients through MAiD can be reduced. iv Lay Summary Since Medical Assistance in Dying (MAiD) became legal in Canada in 2016, nurses have been having complex conversations with patients and their families about MAiD. The purpose of this study was to learn how nurses communicate about MAiD, and what challenges they face in these conversations. The findings indicate that nurses have open and honest conversations with patients, support patients to create patient-centred provisions, and consider a patient's unique needs related to communicative practices. This study also found that nurses face many unique challenges when communicating about MAiD, including how much information they can legally share with patients, how to say goodbye to patients when their date and time of death is known, and how to communicate with patients and their families regarding ineligibility. It is recommended that, as the number of Canadians pursuing MAiD continues to increase, more research should be done to support nurses in these challenging conversations. v Preface This thesis is the original, unpublished work of the author, Heidi Parker, with support from Supervisor Dr. Barbara Pesut, and committee members Dr. Sally Thorne, and Dr. Anita Chaudhuri. The author worked closely with Dr. Barbara Pesut on the design of the secondary analysis as well as the development of the codebook for the analysis with input from the thesis committee. The interviews used for analysis in this study are part of a larger study funded through the Canadian Institutes of Health Research (CIHR) "Strategies to Relieve Suffering at End-of-Life (STRSEOL): A longitudinal qualitative study of healthcare policy and nursing " and "Canadian Nursing and Medical Assistance in Dying: Synthesizing Knowledge for Policy and Practice" which the author of this thesis was not a part of. The author conducted the analysis of the data independently with ongoing consultation with Dr. Barbara Pesut. Finally, the author wrote the thesis independently with ongoing review from Dr. Barbara Pesut, and revisions were made as recommended by committee members Dr. Sally Thorne and Dr. Anita Chaudhuri. This secondary analysis was granted ethical approval by the University of British Columbia Behavioural Research Ethics Board – Certificate Number H22-03782. Generative AI was not used for any aspects of this work. vi Table of Contents Abstract ..................................................................................................................................... iii Lay Summary ............................................................................................................................ iv Preface ....................................................................................................................................... v Table of Contents ...................................................................................................................... vi List of Tables ............................................................................................................................ xii List of Abbreviations ............................................................................................................... xiii Acknowledgements ................................................................................................................. xiv Chapter 1: Introduction ............................................................................................................... 1 1.1 Background ....................................................................................................................... 1 1.1.1 MAiD in Canada ........................................................................................................ 2 1.1.2 MAiD and Mental Health ........................................................................................... 7 1.1.3 MAiD and Nursing ................................................................................................... 10 1.2 Communication ............................................................................................................... 13 1.2.1 End of Life Communication ..................................................................................... 14 1.3 Purpose of Study ............................................................................................................. 17 1.4 Research Question .......................................................................................................... 18 Chapter 2: Literature Review .................................................................................................... 19 2.1 Overview ........................................................................................................................ 19 2.2 Nurses’ Communication at End of Life ........................................................................... 19 2.2.1 Patient or Family Challenges .................................................................................... 20 2.2.2 Clinician Challenges................................................................................................. 21 2.2.3 Organizational Challenges ........................................................................................ 23 vii 2.2.4 Strategies ................................................................................................................. 24 2.3 Multidisciplinary Communication About MAiD ............................................................. 28 2.3.1 Personal Challenges ................................................................................................. 28 2.3.2 Professional Challenges ............................................................................................ 29 2.3.3 Organizational Challenges ........................................................................................ 32 2.4 Nurses’ Communicative Experiences in the Context of MAiD ........................................ 33 2.4.1 Importance of Communication ................................................................................. 33 2.4.2 Challenges of Communication .................................................................................. 34 2.5 Communication When Assisted Death is not Legal ......................................................... 35 2.5.1 Challenging Experiences .......................................................................................... 36 2.5.2 Strategies ................................................................................................................. 37 2.5.3 Interpreting the Meaning Behind the Request ........................................................... 38 2.5.4 Maintaining a Therapeutic Relationship ................................................................... 38 2.6 Primary Focus on Nurses’ Communication and MAiD: A Scoping Review ..................... 39 2.6.1 Common Themes ..................................................................................................... 40 2.6.2 Differing Themes ..................................................................................................... 42 2.6.3 Strengths and Limitations ......................................................................................... 43 2.7 Chapter Summary ........................................................................................................... 44 Chapter 3: Research Methods ................................................................................................... 46 3.1 Overview ........................................................................................................................ 46 3.2 Research Approach ......................................................................................................... 46 3.2.1 Philosophical Underpinnings .................................................................................... 47 3.3 Study Design................................................................................................................... 52 viii 3.3.1 A Note on Language................................................................................................. 52 3.3.2 Sample ..................................................................................................................... 52 3.3.3 Data Collection ........................................................................................................ 55 3.3.4 Data Analysis ........................................................................................................... 57 3.3.5 Knowledge Translation ............................................................................................ 64 3.4 Quality ............................................................................................................................ 66 3.4.1 Epistemological Integrity ......................................................................................... 66 3.4.2 Representative Credibility ........................................................................................ 67 3.4.3 Analytic Logic ......................................................................................................... 68 3.4.4 Interpretive Authority ............................................................................................... 68 3.4.5 Moral Defensibility .................................................................................................. 69 3.4.6 Disciplinary Relevance ............................................................................................. 69 3.4.7 Pragmatic Obligation ................................................................................................ 70 3.4.8 Contextual Awareness .............................................................................................. 70 3.4.9 Probable Truth ......................................................................................................... 71 3.5 Research Ethics Review and Approval ............................................................................ 71 3.6 Reflexivity ...................................................................................................................... 72 3.7 Chapter Summary ........................................................................................................... 74 Chapter 4: Findings .................................................................................................................. 75 4.1 Introduction .................................................................................................................... 75 4.1.1 Description of the Sample ........................................................................................ 76 4.2 Contemplation................................................................................................................. 77 4.2.1 Patient Initiated Conversations ................................................................................. 77 ix 4.2.2 Nurse Initiated Conversations ................................................................................... 87 4.2.3 Initial Conversations with the MAiD Team .............................................................. 90 4.2.4 Communicating with Families .................................................................................. 92 4.2.5 Conversations when MAiD is Not Legal .................................................................. 93 4.2.6 Challenging Conversations Related to Ineligibility ................................................... 95 4.2.7 Summary .................................................................................................................. 96 4.3 The Assessment .............................................................................................................. 96 4.3.1 Adjusting Time Based on Patient Needs ................................................................... 97 4.3.2 Facilitating an Open Conversation ............................................................................ 99 4.3.3 Setting the Scene for the Provision ......................................................................... 106 4.3.4 Communicating about Ineligibility ......................................................................... 109 4.3.5 Summary ................................................................................................................ 111 4.4 The Waiting Period ....................................................................................................... 111 4.4.1 Listening to Patient Stories ..................................................................................... 112 4.4.2 Checking in With Patients ...................................................................................... 113 4.4.3 Setting the Scene .................................................................................................... 115 4.4.4 Navigating Challenging Situations through Conversation ....................................... 121 4.4.5 Summary ................................................................................................................ 126 4.5 The Provision ................................................................................................................ 126 4.5.1 “Saying Goodbye” ................................................................................................. 126 4.5.2 Building Relationships on the Day of Provision ...................................................... 128 4.5.3 Creating a Comfortable Environment: “be compassionate, empathetic, and connect with the human” .............................................................................................................. 132 x 4.5.4 Providing Reassurance and Validation .................................................................... 143 4.5.5 Ensuring Final Consent and Patient Readiness: “let’s get this show on the road” .... 148 4.5.6 Pronouncing Death ................................................................................................. 151 4.5.8 Summary ................................................................................................................ 153 4.6 Bereavement ................................................................................................................. 154 4.6.1 Expressions of Gratitude ........................................................................................ 154 4.6.2 Communication About What Comes Next .............................................................. 156 4.6.3 Bereavement Care .................................................................................................. 159 4.6.4 Summary ................................................................................................................ 160 4.7 Recommendations ......................................................................................................... 160 4.7.1 Support and Education for Nurses .......................................................................... 161 4.7.2 Including Conversations about Care Options Early ................................................. 163 4.7.3 Implementing a Way to Receive Feedback ............................................................. 163 4.7.4 Summary ................................................................................................................ 165 4.8 Chapter Summary ......................................................................................................... 165 Chapter 5: Discussion ............................................................................................................. 167 5.1 Introduction .................................................................................................................. 167 5.2 Summary of Findings .................................................................................................... 167 5.3 What are Important Characteristics about How Nurses Communicate in relation to MAiD in Canada? .......................................................................................................................... 169 5.3.1 Nurses are Present with Patients and Families ........................................................ 170 5.3.2 Nurses Communicate Directly to Create a Patient-Centred Provision ..................... 175 5.3.3 Nurses Use a Relational Practice to Determine Patient Needs ................................. 178 xi 5.4 What Challenges Exist for Nurses when Communicating with Patients and Families throughout the MAiD Process in Canada ............................................................................ 181 5.4.1 Communicative Challenges Related to Organizational and Jurisdictional Policies .. 181 5.4.2 Communicative Challenges related to the Unique Context of MAiD ...................... 183 5.5 Implications .................................................................................................................. 189 5.5.1 Implications for Practice ......................................................................................... 189 5.5.2 Implications for Education ..................................................................................... 191 5.5.3 Implications for Research ....................................................................................... 192 5.6 Limitations .................................................................................................................... 193 5.7 Chapter Summary ......................................................................................................... 195 Chapter 6: Conclusion ............................................................................................................ 196 References .............................................................................................................................. 198 Appendix A: Scoping Review ................................................................................................. 217 Appendix B: Search Strategy .................................................................................................. 218 Appendix C: Prisma Flow Diagram ........................................................................................ 219 Identification ...................................................................................................................... 219 Eligibility............................................................................................................................ 219 Included .............................................................................................................................. 219 Screening ............................................................................................................................ 219 Appendix D: Data Synthesis Table ......................................................................................... 220 xii List of Tables Table 1 – Summary of Themes......................................................................................................75 xiii List of Abbreviations ALS: Amyotrophic Lateral Sclerosis (Participant Quote, p. 105) BCCNM: British Columbia College of Nurses and Midwives CHPCA: Canadian Hospice Palliative Care Association CIHR: Canadian Institutes of Health Research CMHA: Canadian Mental Health Association CNA: Canadian Nurses Association CNPS: Canadian Nurses Protective Society CRNNL: College of Registered Nurses of Newfoundland and Labrador EOL: End of Life ESAS: Edmonton Symptom Assessment Scale (Participant Quote, p. 102) GNWT: Government of Northwest Territories ICU: Intensive Care Unit IV: Intravenous MAiD: Medical Assistance in Dying NP: Nurse Practitioner RN: Registered Nurse TCPS2: Tri-Council Policy Statement xiv Acknowledgements I want to express my deepest gratitude to all the individuals who have supported me to complete this thesis over the last three years. First and foremost, I would like to thank my supervisor, Dr. Barb Pesut for her guidance and support throughout my thesis. I could not have completed this without her invaluable patience and feedback. I would also like to say a special thank you to my committee members Dr. Sally Thorne, and Dr. Anita Chaudhuri, who took time to provide support and share their expertise with me throughout this process. Lastly, I’d like to thank my friends and family who have supported me through this work, keeping me grounded in moments of stress. To my partner Andrew, thank you for your unquestioned support and belief in me throughout this program. 1 Chapter 1: Introduction 1.1 Background Medical Assistance in Dying (MAiD) became legal in Canada in 2016. While, in Canada, it is a relatively new legal practice, it is not a new concept in Canada or internationally. The idea of assisted death, assisted suicide, or euthanasia dates back thousands of years (Brenna, 2021). Throughout history, there has been an ongoing debate about assisted death. Opponents to the practice cite religious opposition (Brenna, 2021), the potential to devalue human life (Carter v. Canada, 2015), and ethical concerns (Brenna, 2021), while supporters voice support for patient autonomy and dignity, and a relief of suffering (Brenna, 2021; Carter v. Canada, 2015; Downie, 2022). In recent years, assisted dying in various forms, whether through active euthanasia or assisted suicide, has been legalized in multiple jurisdictions around the world, including the Netherlands (2002), Belgium (2002), Luxemburg (2009), Columbia (2015), Canada (2016), Victoria, Australia (2017), and Western Australia (2019) (Mroz et al., 2021). Additionally, specific states in the United States of America have legislated assisted death, including Oregon (1997), Washington (2009), Vermont (2013), California (2015), Colorado (2016), the District of Columbia (2016), Hawaii (2018), Maine (2019), and New Jersey (2019) (Mroz et al., 2021). While it is not legislated, assisted suicide has been decriminalized in Switzerland since 1942 (Mroz et al., 2021). Switzerland is known worldwide for its attraction of “suicide tourists,” given that it allows for non-residents to access a medically assisted death (Schlapfer, 2017, para. 2). MAiD, in Canada, can be either clinician-administered, where a physician or nurse practitioner directly administers a substance causing death, or self-administered, where a physician or nurse practitioner prescribes a drug that a person can take themselves to bring about their death (Government of Canada, 2021). In this paper, the term MAiD will be used to discuss 2 the procedure in the Canadian context. Other countries use terms such as physician-assisted suicide, assisted dying, or euthanasia. While each term has specific differences, for consistency in this paper, assisted death or assisted dying will be used when discussing the process more generally and when referring to contexts outside Canada. 1.1.1 MAiD in Canada Multiple attempts at legislative reform in the early 1990s, as well as a few key court cases, including Rodriguez v. British Columbia (1993) and Carter v. Canada (2015), brought about the current legislation in Canada (Carter v. Canada, 2015; Downie, 2022). A key article by Downie (2022) describes the historical context of MAiD in Canada “from prohibition to permission” (p. 321). In 2009, the Quebec College of Physicians publicized its position “that euthanasia could be consistent with its Code de Deontologie (or Code of Ethics) and could constitute appropriate care” (Downie, 2022, p. 326). From there, provincial legislation was passed on June 5, 2014, and MAiD could be provided in Quebec beginning in December 2015 (Downie, 2022). Downie (2022) goes on to describe that while it was still prohibited within the federal Criminal Code, as provincial governments are responsible for the administration of the justice system in Canada, as long as providers in Quebec followed the Quebec legislation, MAiD could be provided without fear of criminal liability. Similarly, in the rest of Canada, the Royal Society of Canada Expert Panel on End of Life Decision Making released a report recommending assisted death’s legalization in 2011 (Downie, 2022). Soon after, as MAiD laws had not yet changed in Canada, Kay Carter, a Canadian woman with a painful degenerative spinal condition, went to Switzerland to access an assisted death (Downie, 2022). Most significantly, Carter v. Canada, an appeal from the British Columbia Civil Liberties Association, was brought to the Supreme Court of Canada in 2015, resulting in 3 the changing legislation (Carter v. Canada, 2015; Downie, 2022). The Supreme Court of Canada gave the federal government 12 months to make amends to the Criminal Code to allow for MAiD (Downie, 2022). During this time, Downie (2022) highlighted that multiple expert panels and advisory groups were appointed at the federal and provincial levels to engage stakeholders in consultations and provide advice for implementing MAiD as it became legal. While there was a four-month delay from the Supreme Court of Canada’s initial 12 month ruling, MAiD became legal in Canada in June 2016 with the passage of Bill C-14 (Government of Canada, 2021). At this time, the Criminal Code was amended to include an exemption for medical practitioners or nurse practitioners to aid a person to die by suicide so long as they follow specific criteria (Bill C-14, 2016). The particular criteria are highlighted in section 241.2 of the Criminal Code and include specific eligibility criteria for MAiD, criteria for a grievous and irremediable medical condition, and safeguards for the process (Bill C-14, 2016). According to subsection (1) of Bill C-14, a person may receive MAiD only if they meet the following eligibility criteria: (a) They are eligible – or, but for any applicable minimum period of residence or waiting period, would be eligible – for health services funded by a government in Canada; (b) They are at least 18 years old and be capable of making decisions with respect to their health; (c) They have a grievous and irremediable medical condition; (d) They have made a voluntary request for MAiD that, in particular, was not made as a result of external pressure; and 4 (e) They give informed consent to receive MAiD after having been informed of the means that are available to relieve their suffering, including palliative care (Bill C-14, 2016, s 241.2(1)) In addition, within the legislation, it was clarified in subsection (2) of Bill C-14 that to be considered to have a grievous and irremediable medical condition, the person must: (a) have a serious and incurable illness, disease, or disability; (b) be in an advanced state of irreversible decline in capability; and (c) that illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and cannot be relieved under conditions that they consider acceptable; and (d) their death must be deemed reasonably foreseeable (Bill C-14, 2016, s 241.2(2)). At this time, there were also safeguards in place that the medical or nurse practitioner providing MAiD must ensure were met. These safeguards expected the medical or nurse practitioner to: (a) be of the opinion that the person meets all of the criteria set out in subsection (1); (b) ensure that the person’s request for medical assistance in dying was (i) made in writing and signed and dated by the person or by another person under subsection (4), and (ii) signed and dated after the person was informed by a medical practitioner or nurse practitioner that the person has a grievous and irremediable medical condition; 5 (c) be satisfied that the request was signed and dated by the person — or by another person under subsection (4) — before two independent witnesses who then also signed and dated the request; (d) ensure that the person has been informed that they may, at any time and in any manner, withdraw their request; (e) ensure that another medical practitioner or nurse practitioner has provided a written opinion confirming that the person meets all of the criteria set out in subsection (1); (f) be satisfied that they and the other medical practitioner or nurse practitioner referred to in paragraph (e) are independent; (g) ensure that there are at least 10 clear days between the day on which the request was signed by or on behalf of the person and the day on which the medical assistance in dying is provided or — if they and the other medical practitioner or nurse practitioner referred to in paragraph (e) are both of the opinion that the person’s death, or the loss of their capacity to provide informed consent, is imminent — any shorter period that the first medical practitioner or nurse practitioner considers appropriate in the circumstances; (h) immediately before providing the medical assistance in dying, give the person an opportunity to withdraw their request and ensure that the person gives express consent to receive medical assistance in dying; and (i) if the person has difficulty communicating, take all necessary measures to provide a reliable means by which the person may understand the information that is provided to them and communicate their decision (Bill C-14, 2016, s 241.2(3)) These eligibility requirements and safeguards were put in place for medical professionals to ensure that the MAiD law was implemented properly within Canada (Government of Canada, 6 2020). After the introduction of the MAiD legislation, Downie (2022) described that two individuals in Quebec were found to be ineligible for MAiD as they were not considered to be “at the end of life” despite the unbearable physical and psychological suffering they were experiencing (p. 327). At this point, a Quebec judge struck down the criteria that the patient must be “at the end of life” (Downie, 2022). The Government of Quebec did not appeal this decision, and on March 11, 2020, the “at the end of life” criterion was removed from Quebec law (Downie, 2022). Shortly after, the Canadian federal government followed suit and passed Bill C-7, which came into effect in March 2021, expanding eligibility criteria for MAiD and updating the previous safeguards (Downie, 2022). The expanded eligibility for MAiD in Canada maintained all requirements for considering a grievous and irremediable medical condition except for the requirement (d) that a person’s death has become reasonably foreseeable (Government of Canada, 2021, Criminal Code, 1985). This change created a two-track process where Track One is for those with a reasonably foreseeable death, and Track Two is for those with a serious illness, disease, or disability causing unbearable suffering where the person’s death is not reasonably foreseeable (Government of Canada, 2022). Each track has specific safeguards outlined within the Criminal Code (Criminal Code, 1985). Notably, Track One allows for a waiver of final consent in specific circumstances and no longer requires a ten-day waiting period (Downie, 2022; Criminal Code, 1985). Track Two resembles the original legislation however, one of the practitioners determining eligibility must either have expertise in the condition causing the person’s suffering or consult with an expert, and the waiting period was extended to 90 days (Criminal Code, 1985). 7 This change in the Criminal Code also included an exclusion that states “a mental illness is not considered to be an illness, disease or disability” which was to remain in place until March 17, 2023 (Criminal Code, 1985; Government of Canada, 2022). The exclusion period was created to give the government time to consider how to provide MAiD to this specific population safely (Government of Canada, 2022). However, on March 9, 2023 the Government of Canada officially extended the temporary exclusion until March 17, 2024 (Government of Canada, 2024), and on February 29, 2024, the Government passed legislation that further extended the exclusion until March 17, 2027 (Government of Canada, 2024). 1.1.2 MAiD and Mental Health As of March 2024, the exclusion for Mental Health as a sole diagnosis for MAiD has been extended until March 17, 2027. The government passed this legislation, stating “the health system is not yet ready for this expansion” (Health Canada, 2024). Since Bill C-7 was passed, and the eligibility for MAiD was expanded, the government has been reviewing the topic of mental illness and how it relates to MAiD. With the introduction of Bill C-7, the Minister of Health and the Minister of Justice were required to complete an independent expert review on the topic of mental illness, with a subsequent parliamentary review required (Downie, 2022; Health Canada, 2022b). The Canadian government formed an Expert Panel on MAiD and Mental Illness and after a thorough review was conducted with experts and stakeholders, the panel released a report highlighting four primary areas of concern (Health Canada, 2022b). The areas of concern include the challenge of defining the incurability and irreversibility of mental illness, assessing decision-making capacity, recognizing that suicidality may be a symptom of some mental illnesses, and acknowledging how structural vulnerability may impact mental illness and the subsequent desire for MAiD (Health Canada, 2022b). These key areas of concern were also 8 highlighted within the report of the Special Joint Committee on Medical Assistance in Dying (Arseneault & Martin, 2024). While these concerns arose from the review of the specific concerns of mental illness as the sole underlying medical condition, the expert panel suggests that these may also be important factors to consider when considering eligibility for MAiD more broadly (Health Canada, 2022b). Defining Incurability or Irreversibility. In the context of mental illness, incurability or irreversibility is difficult to confirm or predict (Dierickx et al., 2017; Freeland et al., 2022; Health Canada, 2022b; Mroz et al., 2021). Notably, the Criminal Code does not define what incurability or irreversibility means in the Canadian context, leaving it up to individual clinicians to determine (Health Canada, 2022b). Unless additional policies or guidelines are provided to healthcare professionals through federal or provincial/territorial governing bodies or professional organizations, individual clinicians may lack appropriate guidance and put their licenses at risk when determining this eligibility criterion (Health Canada, 2022b). Assessing Decision-Making Capacity. Another challenge within the current legislation is how MAiD assessors can determine the capacity of someone to make significant health decisions in the context of mental illness (Health Canada, 2022b; Macri et al., 2020; Mroz et al., 2021; Trachsel & Jox, 2022). While self-determination and autonomy are essential factors to maintain in healthcare, doubts about a person's decision-making capacity often arise in specific mental illnesses such as depression, schizophrenia, and bipolar disorder (Trachsel & Jox, 2022). For example, if a person's mental illness affects their ability to recognize their value as a human, they may not fully realize the harm of death (Health Canada, 2022b). Therefore, when a decision is as impactful as choosing MAiD, assessors must be able to ensure that a person can make this decision and give evidence of informed consent (Trachsel & Jox, 2022). 9 Suicidality. It can be challenging to determine if the request for assisted death is a symptom of mental illness (Canadian Mental Health Association [CMHA], 2017; Dierickx et al., 2017; Health Canada, 2022b). However, the expert panel highlighted that while suicidality is a symptom of some mental illnesses, it is not a symptom for all people living with mental illness and therefore is not a reason to exclude those living with mental illness from accessing MAiD (Health Canada, 2022b). Additionally, the report highlighted that in many other situations, doctors care for patients who are making life-ending decisions, for example, refusing to continue with life-saving heart failure medication, without the same concern as with mental illness (Heath Canada, 2022b). The report argues that a thorough capacity assessment must be completed alongside suicide prevention interventions and a discussion of other care options throughout the MAiD assessment process (Health Canada, 2022b). Structural Vulnerability. Finally, experts argue that there must be consideration of how structural vulnerability and the social determinants of health affect people living with mental illness and the impact that could have on a person's desire to request an assisted death (Health Canada, 2022b). Structural vulnerability, as defined in the Health Canada (2022b) report, refers to "the impacts of the interaction of the demographic attributes, with assumed or attributed social status related to one's position in prevailing social, cultural, and political hierarchies" (p. 11). The expert panel report indicates that people with mental illness are more likely to be in situations of structural vulnerability than the general population (Health Canada, 2022b). Structural vulnerabilities could impact mental illness in many different ways, including loneliness (CMHA, 2017), lack of adequate healthcare options (CMHA, 2017; Health Canada, 2022b), and a lower quality of life, impacting a person's experience of their illness (Freeland et al., 2022; McPherson & Chisolm, 2021). Some disability advocates argue that allowing MAiD for those living with 10 mental illness might push people toward death prematurely when so many complicating factors are at play (Mroz et al., 2021). Recommendations. Overall, the expert panel provided 19 recommendations in their final report. These recommendations focused on developing practice standards, providing guidance on interpreting grievous and irremediable medical conditions, considering the vulnerabilities that people experiencing mental illness may face when expanding access to MAiD, reviewing the assessment process to ensure appropriate professionals are included in the process, and focusing on the implementation phase (Health Canada, 2022b). The recommendations that focus on the implementation phase include considering consulting with First Nations, Inuit and Metis peoples, providing adequate training, considering a model of oversight including case review, monitoring systems, and research (Health Canada, 2022b). Despite all the work that has been done in Canada thus far to consider implementing MAiD for those with a sole diagnosis of mental illness including expert reviews, parliamentary committees, and consultation with experts, there is still much work to be completed to implement this safely and equitably in Canada. The Government of Canada (2024) extended the exclusion of those living with a sole diagnosis of mental health for an additional three years to allow time for that work to be completed, including giving provinces and territories time to develop regulations, guidelines, and resources for this particular situation. 1.1.3 MAiD and Nursing The proportion of total deaths attributed to MAiD in Canada rose from 2.0% in 2019, 2.5% in 2020, 3.3% in 2021, and 4.1% in 2022 (Health Canada, 2022a; Health Canada, 2023). With a rising number of cases in Canada, the impact of MAiD on nursing is certain to increase as well. For example, in some provinces, the proportion of assisted deaths is rising above 5% with 11 British Columbia at 5.5% and Quebec at 6.6% (Health Canada, 2023). While there has been ongoing research regarding healthcare professionals’, including nurses’, experiences of MAiD (Bellens et al., 2020; Pesut et al., 2020c, 2020d, 2020e), there is still room for further research. This thesis will focus on the nurses’ experience and, specifically, how nurses communicate about MAiD with patients and their families. While Canada is not the first country to legalize MAiD, Canada is the first country that allows nurse practitioners (NPs) to take an active role in the assessment and provision of assisted death (Government of Canada, 2021; Pesut et al., 2020e; Wright et al., 2017). In Canada, NPs are registered nurses (RNs) with additional preparation at the graduate level which expands their scope of practice (Canadian Nurses Association [CNA], 2024). In addition to this role taken on by NPs, nurses remain central in the processes of MAiD. Regardless of assessing or providing MAiD, nurses are involved throughout the process of MAiD in various ways. For example, nurses are often the first to receive an inquiry about assisted dying (Bellens et al., 2020; Fujioka et al., 2018; Pesut et al., 2019; Wright et al., 2017). When nurses receive such inquiries, they must discern the meaning behind the question and engage in discussions to support patients in making ethically sound decisions (Dierckx de Casterle et al., 2010; Pesut et al., 2019; Wright et al., 2017). Nurses also provide care to patients and families throughout the MAiD process (Bellens et al., 2020; Pesut et al., 2019). Furthermore, nurses provide care to patients throughout the stages of contemplation, assessment, implementation and family bereavement related to MAiD (Bellens et al., 2020; Dierckx de Casterle et al., 2010; Pesut et al., 2019). Finally, nurses are often the professionals in MAiD coordinator roles, making them the first line of triage for patients (Pesut et al., 2020c). All of these nursing roles require complex communication skills to engage in meaningful conversations with patients. 12 Additionally, what nurses are allowed to communicate about MAiD varies across Canada, adding to the challenge of communication. The Criminal Code is a federal law that covers all of Canada. This means that nationwide it is a criminal offense to counsel a person to die by suicide; however, the Criminal Code clarifies that “for greater certainty, no social worker, psychologist, psychiatrist, therapist, medical practitioner, nurse practitioner or other healthcare professional commits an offence if they provide information to a person on the lawful provision of medical assistance in dying” (Bill C-14, 2016, s 227(3)). However, provincial nursing regulatory bodies have interpreted the law in varying ways and how or when nurses are instructed to provide information about MAiD differs across Canada. For example, in the Maritime provinces, nurses are instructed to only discuss MAiD with a patient if the patient first requests the information otherwise bringing up the topic of MAiD may be interpreted as an offence under the Criminal Code (College of Licensed Practical Nurses of Newfoundland and Labrador, 2021; College of Registered Nurses of Newfoundland and Labrador [CRNNL], 2022; Nova Scotia College of Nursing, 2022; Nova Scotia Health, 2022). In Newfoundland and Labrador, the restriction of bringing up MAiD includes both RNs and NPs (CRNNL, 2022). In Nova Scotia and PEI, nurses are given the guidance that, when asked about MAiD, they should respond with information about MAiD in the context of all end of life care options including palliative care (College of Registered Nurses of Prince Edward Island, 2021; Nova Scotia Health, 2022). Conversely, in other provinces such as Ontario, Manitoba, Saskatchewan, Alberta, and British Columbia, regulatory documents indicate that, while nurses should be aware of the law and not encourage or pressure a patient to choose MAiD, nurses are not restricted to only discussing MAiD if the patient initiates the discussion (College of Nurses of Ontario, 2021; College of Registered Nurses of Alberta, 2022; Provincial Medical Assistance in Dying Clinical 13 Team, 2021; College of Registered Nurses of Saskatchewan, 2021; British Columbia College of Nurses & Midwives [BCCNM], 2022). Manitoba regulatory documents further their guidance to emphasize the importance of good communication in addressing patient questions and assessing patient needs (Provincial Medical Assistance in Dying Clinical Team, 2021). In fact, the guidelines explicitly state that nurses can bring up MAiD as an option if their assessment of patient needs deems it appropriate (Provincial Medical Assistance in Dying Clinical Team, 2021). Finally, in the territories, nurses are able to provide factual information about the lawful provision of MAiD to patients (Government of Northwest Territories [GNWT], 2021; Yukon Health and Social Services, 2016); however in the Northwest Territories, it is recommended that this information is limited to discussing the eligibility criteria, and the specific process for MAiD in the territory (GNWT, 2021). It is also required that after receiving a request for information about MAiD, healthcare providers must provide the patient with the contact card for the MAiD coordinating service (GNWT, 2021). Given the varied guidelines across Canada, nurses may develop varied communication strategies based on their province of work. 1.2 Communication Effective communication is a key strategy used by nurses when providing care to patients. In fact, communication is an entry-level competency required for all nurses across Canada and an important strategy nurses can use to create a safe and therapeutic environment (Almost, 2021). Almost (2021) describes communication in nursing as “the ability to express and receive written, verbal, and non-verbal information in a respectful and professional manner (p. 60). While many nurses aspire to be good communicators, evidence has shown that communication is not always prioritized in the nurse-patient relationship due to its challenging nature, with some research indicating that nurses find conversations with patients in certain 14 settings “demanding and draining” (Bullington et al., 2019, p. 136). This thesis will focus on communication between nurses and patients and their families. There are different ways to conceptualize communication. A working definition of the concept used for this thesis identifies that communication is “a dynamic interactive process made up of the organized, purposive, mutually influential and mutually recognizable actions and experiences that are created in a variety of modes by and between active participants as they interconnect with each other” (Finnegan, 2014, p. 29). Finnegan’s definition broadly includes the variety of channels of communication including “auditory, visual, kinesic, proxemic, tactile or olfactory” modes which include various aspects such as “gestures, non-verbal sounds, positioning, or touch” (p. 24). While speech acts were the primary focus of this study, this broad definition of communication allowed me the flexibility to consider all types of communication throughout the analysis. 1.2.1 End of Life Communication End of life (EOL) communication can refer to a range of conversations, including discussing advanced care plans, advanced directives, or goals of care (Benton, 2017; Isaacson & Minton, 2018). In the context of healthcare conversations, advanced care planning conversations are discussions between healthcare professionals and patients to encourage patients to think about the health care they would want to receive if they could not speak for themselves (Canadian Hospice Palliative Care Association [CHPCA], 2020). Advanced directives, as described by Benton (2017), are commonly aligned with a power of attorney for health care, or a living will and are often written by a patient to guide whoever is appointed to make decisions on behalf of the patient should they lose the capacity to make a decision for themselves. Advanced directives may or may not be discussed within the context of advanced care planning. Finally, 15 goals of care conversations are similar to advanced care planning conversations, however, while advanced care planning conversations are likely to include future wishes of a patient, goals of care conversations are discussions about a patient’s wishes in a current clinical situation (CHPCA, 2020). EOL communication may also refer to discussions conveying diagnosis and prognosis. While communicating about a diagnosis or prognosis is primarily associated with a physician’s role (Gutierrez, 2012), the Canadian Nurses Association (CNA) highlights communication skills as necessary for hospice palliative care nurses to communicate with both patients and families on topics such as diagnosis, prognosis, change in health status, in addition to goals of care, decision-making, advance care planning, treatment options, planning for expected death, death and dying, and loss, grief and bereavement (CNA, 2019). A Delphi study that was completed to develop a consensus definition of advanced care planning came to the conclusion that advanced care planning can be defined as “a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care” (Sudore et al., 2017, p. 826). In addition, the same study suggested the consensus conclusion that the goal of advanced care planning was “to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness” (p. 826). Sudore et al. (2017) highlighted strategies to facilitate advance care planning including bringing together the patient and a person or people they trust to include in the decision-making with healthcare professionals present to support discussions, being aware of the patient’s readiness for the conversation and how much information they want to have, acknowledging the necessity of revisiting advance care plans over time, focusing on overall goals regarding medical care first with specific plans for future medical treatment later, naming a person that the patient trusts to make decisions in the 16 future if the patient is unable to, and ensuring the patient is making decisions based on an understanding of their current health situation. Advanced care planning, while difficult for patients, families, and healthcare providers (Isaacson & Minton, 2018), is an essential aspect of communication that can help increase the quality and quantity of discussions about EOL care (Sagara et al., 2021). As these conversations can be emotional for patients and families, ensuring that health care professionals have the communication skills to adequately support patients and families to have these difficult conversations is essential. Without adequate communication skills, health care professionals may inadvertently approach these discussions in ways that, at best, are non-productive, or worse, could harm the clinician-patient relationship. In regards to EOL communication more generally, clear communication has been linked to reduced decision-making time and increased family satisfaction at EOL (Benton, 2017). Benton (2017) also found that utilizing “proactive” communication that is patient- or family-centred, avoiding medical jargon, and focusing on patient-specific goals of care can prevent disagreements at EOL. However, although they are important, communication skills relevant to EOL are not often taught during professional training to the same extent as is communication on other topics, such as concrete skills or procedures (Benton, 2017). For example, Benton (2017) describes that in some cases, communication skills may be seen as “innate” and therefore not needing to be taught as an intricate skill the way that schools may teach clinicians how to complete a medical procedure (p. 10). Isaacson and Minton (2018) compare the role of a nurse in EOL conversations to orchestrating a symphony. Acting as an “information broker, supporter, and advocate while arranging and directing essential elements of best practice alongside patient/family goals” are ways in which nurses support patients and families at EOL (Isaacson & Minton, 2018, p. 6). 17 Practical strategies for healthcare providers to consider regarding EOL communication include the importance of timing and context (Benton, 2017; Isaacson & Minton, 2018), being at eye level with the patient or family member (Benton, 2017), listening (Benton, 2017; Isaacson & Minton, 2018), avoiding medical jargon (Benton, 2017), honesty (Isaacson & Minton, 2018), considering the big picture (Benton, 2017), and asking the patient of the family how to be of support (Benton, 2017). EOL communication will be reviewed in further detail within the literature review in Chapter 2. 1.3 Purpose of Study The goal of this study was to explore and identify best practices in communication for Canadian nurses (RNs and NPs) as they relate to Medical Assistance in Dying (MAiD). Given that other jurisdictions where assisted dying has been legal have not allowed nurses to be actively involved in the entire process, and the relative newness of the MAiD program in Canada, there is a significant lack of literature on how nurses communicate about MAiD. This has the potential for nurses to be unsure of how to discuss MAiD given the vague guidelines on the nurse’s role in discussing MAiD. For example, the British Columbia College of Nurses and Midwives (BCCNM) states that nurses are able to “provide information and education about MAiD and answer questions about MAiD-specific care,” however they are not able to “encourage, recommend, counsel or advise a person to consider MAiD” (BCCNM, 2022). This research aimed to uncover concrete communication strategies for nurses working with patients considering or choosing a medically assisted death, with the ultimate goal to improve the care that nurses provide to patients at the EOL through being better informed about communication options. Given that MAiD is relatively new in Canada, this study aimed to develop a framework for nurses to communicate with patients and families about MAiD safely 18 and effectively in addition to improving nurses’ confidence and ability to have meaningful conversations with their patients. 1.4 Research Question Primary Question How do nurses describe their communicative practices related to Medical Assistance in Dying in Canada? Secondary Questions 1. What are important characteristics about how nurses (RNs and NPs) communicate with patients and families in discussions regarding MAiD in Canada? 2. What challenges exist for nurses (RNs and NPs) when communicating with patients and families throughout the MAiD process in Canada? 3. What supports do nurses require to communicate with patients and families throughout the MAiD process? What additional research is required to develop knowledge of nurses’ communicative practices related to MAiD in Canada? 19 Chapter 2: Literature Review 2.1 Overview Communication at EOL is a unique and intricate skill that is challenging for many healthcare professionals (Benton, 2017), and this has become even more challenging in the context of MAiD. The CNA (2019) lists effective communication as an important competency for hospice palliative care nurses. With the introduction of MAiD in Canada, EOL discussions are further complicated as Canadians have access to an additional option. Given that the practice of MAiD is relatively new, and nurses have a unique role in MAiD in Canada, it is important for nurses to know how to communicate about MAiD. However, there is a significant lack of literature on this topic, specifically focusing on the nursing profession. Due to the lack of research articles on the specific topic, this chapter will begin by broadly reviewing nurses’ communicative practices with patients and families during EOL care including communication in particularly difficult situations. The focus will then narrow towards the topic of MAiD, first considering multidisciplinary healthcare professionals’ communication related to MAiD, then moving to nurses’ experiences with MAiD including a section on nurses’ experiences when the practice of assisted dying is illegal. This chapter will end with reviewing the results of a scoping review where the research was focused solely on nurses' communicative practices surrounding MAiD. 2.2 Nurses’ Communication at End of Life This section will begin by highlighting challenges nurses face when it comes to communication at EOL. These challenges are presented in three main categories including patient or family challenges, clinician challenges, and organizational challenges. Next, this section will highlight strategies used by nurses to overcome these challenges. 20 2.2.1 Patient or Family Challenges Common challenges to EOL discussions include patient or families' difficulty accepting a poor prognosis (Clarke & Ross, 2006; Hendricks-Ferguson et al., 2015; You et al., 2015), patient or family difficulty understanding the limitations of life-sustaining treatment (You et al., 2015), disagreement among patient or families (Vaughn & Santos Salas, 2022; You et al., 2015), or a patient's incapability of making decisions about their goals of care (You et al., 2015). In a study completed by Clarke and Ross (2006), nurses had varied experiences with patients talking about death and dying depending on the unit on which the patient was admitted. It was noted that medical nurses found that patients were either unaware or unwilling to have EOL conversations, whereas palliative care unit nurses found that patients were more open to talk about EOL concerns as they were likely more aware of their prognosis given that they had been admitted to a palliative care unit (Clarke & Ross, 2006). Similarly, in a pediatric oncology setting, nurses reported a perceived tension, or “elephant in the room” when it came to conversations that focused on a poor prognosis or the need for EOL care (Hendricks-Ferguson et al., 2015, p. 246). Nurses believed this tension occurred for a number of reasons including nurses being unsure of when or how to communicate this information, family circumstances affecting their ability to cope with the difficult information, and pediatric patients’ “silent realization of their death” without the same acknowledgement from others or the opportunity to speak openly about their fears (Hendricks-Ferguson et al., 2015, p. 246). In an Intensive Care Unit (ICU) setting, Vaughn and Santos Salas (2022) reported that nurses found EOL conversations were made challenging if families had disagreements about the direction of care, in particular if they disagreed with the medical team about next steps. A multidisciplinary Canadian study that focused on the barriers of communication with patients with serious illness reported that health care providers, including 21 nurses, found that the challenges of communication associated with patients and families, such as lack of agreement among family members regarding treatment plans, or difficulty accepting a poor prognosis, were more challenging to face than the challenges of communication associated with clinicians, which will be discussed in the next section (You et al., 2015). 2.2.2 Clinician Challenges Challenges clinicians face related to EOL conversations include experiencing varied levels of comfort in having EOL discussions (Moir et al., 2015; Toh et al., 2021; You et al., 2015), facing particular situations that make EOL conversations more difficult (Toh et al., 2021; Vaughn & Santos Salas, 2022), and navigating role clarity when it comes to who is the best person to have EOL conversations (Gutierrez, 2012; Wiegand et al., 2019). A clinician’s comfort in having EOL discussions was found to vary between healthcare professionals (Moir et al., 2015). Specifically, in a study of oncology nurses in Singapore, communication difficulties experienced by nurses were more common among nurses who were younger, less experienced, religious, or had less training in EOL care (Toh et al., 2021). In a separate study of nurses from a hospital in the United States, it was also reported that less experience was associated with increased difficulty having EOL discussions; however, the study did not find a significant difference with age (Moir et al., 2015). Furthermore, it was found that a nurse's comfort with EOL discussions may vary based on their place of work. For example, Moir et al. (2015) found that critical care and telemetry nurses found EOL communication more challenging than nurses working in oncology. One likely explanation for this is that oncology nurses have more experience with EOL communication than nurses working in other areas, supporting the idea that experience with EOL conversations increases nurses’ comfort (Moir et al., 2015; Toh et al., 2021; Wiegand et al., 2019). 22 While oncology nurses may be more prepared than other nurses to have difficult conversations, as described above, Toh et al. (2021) reported that oncology nurses still have difficulty talking with patients or families after they receive bad news or when explaining a sudden deterioration of a patient’s health status. As well, while it was not found to be as significant as the challenges of communicating with patients or families, nurses also reported difficulties in communicating with physicians about their assessment of a patient, as well as the current treatment plan and the need for the patient to be reassessed, although the authors did not provide an account as to why this was the case (Toh et al., 2021). Additionally, in the ICU, nurses reported that conversations about palliative care were often avoided (Vaughn & Santos Salas, 2022). Nurses described that it felt like a “faux pas” to talk about death in the critical care setting, and that EOL conversations were not had early enough in the care trajectory which left families having to make decisions in difficult situations leading to feelings of stress, guilt, and doubt (Vaughn & Santos Salas, 2022, p. 15). Regardless of their challenges, nurses are often in a position to have EOL conversations with patients and families. One study conducted in the ICU indicated that, while physicians held the primary role of communicating important prognostic information, nurses, family members, or social workers often prompted physicians to have these conversations (Gutierrez, 2012). Gutierrez (2012) also found that nurses reported feeling as though they had to start EOL conversations, or felt caught in the middle of a situation, given that if the patients’ condition deteriorated, they would be the ones who would undoubtedly be providing care to the patient. Additionally, it was reported that nurses expressed their role in these EOL discussions was often to “fill in the gaps” and interpret any information that patients and families misunderstood after the physician had formally communicated to patients and families (Gutierrez, 2012, p. 176). 23 Similarly, Wiegand et al. (2019) reported that nurses in the ICU would listen to a patients’ needs and then, if necessary, signal to the physician that EOL conversations should be initiated. The same study found that physicians reported relying on the care team, inclusive of nurses, to review patient cases and ensure that care was not moving too fast or slow (Wiegand et al., 2019). If a difficult conversation or decision was required, it was often the clinician who had the closest relationship with the family who began the discussion, regardless of if it was a nurse or a physician (Wiegand et al., 2019). 2.2.3 Organizational Challenges Organizationally, lack of time, privacy, and work culture have been reported as barriers to communication at EOL (Clarke & Ross, 2006). You et al. (2015) reported that nurses found that a physician’s lack of time to discuss goals of care with patients was a barrier to care. Additionally, nurses in another study reported that, within the healthcare team, EOL conversations could be inconsistent, with various team members reporting on different measures, leaving family members confused (Vaughn & Santos Salas, 2022). Nurses also identified that having patients being cared for by multiple physicians was a barrier to goals of care discussions (Brooks, 2019; You et al., 2015) as with more teams involved it was harder for all providers to “get on the same page” (Brooks, 2019, p. 339). Without effective and timely EOL conversations and consistent messaging from the healthcare team, nurses found providing patient-centred care was difficult and families were often left to make decisions in unexpected and crisis situations (Vaughn & Santos Salas, 2022). Vaughn and Santos Salas (2022) also highlight specific complexities of EOL conversations in the ICU. With the ICU being grounded in a “life-saving mentality,” when the focus of care shifts to EOL care patients may not be given the same priority as other patients leaving less time for conversations, as well as a lack of consistency in 24 healthcare providers if the patient is transferred out of ICU for EOL care (Vaughn & Santos Salas, 2022). Many studies also found that nurses and other clinicians reported a lack of education on EOL communication resulting in clinicians having to learn through observation and experience (Brooks, 2019; Clarke & Ross, 2006; Sheridan, 2017; Vaughn & Santos Salas, 2022). Because of this lack of education, some authors recommended more training for nurses to be involved in EOL discussions with patients and families (Anderson et al., 2016; Brooks, 2019). While it was not a key indicator in their study, Moir et al. (2015) stated that nurses within their study reported believing that education on EOL generally would support their EOL communication skills. 2.2.4 Strategies While the literature often cited challenges with communication, many studies also discussed strategies used when communicating at EOL. These strategies are inclusive of verbal, non-verbal, and written communication (Medeiros de Brito et al., 2014). This section will discuss strategies including the importance of listening and timing, engaging in transparent and clear communication, and communicating with the right individuals. Listening and Timing. Communication strategies including practicing mindfulness, listening, and considering timing were all highlighted as strategies to improve EOL communication (Andrade et al., 2019; Brooks, 2019; Omilion-Hodges & Swords, 2016; Vaughn & Santos Salas, 2022; Wiegand et al., 2019). Omilion-Hodges and Swords (2016) conducted a study on mindfulness strategies in communication related to palliative care. One mindful communication strategy used by palliative clinicians, including nurses, was considering the audience in order to better empathize with patients and their families (Omilion-Hodges & Swords, 2016). Considering the audience requires clinicians to think about a patient’s emotional 25 state, asking questions such as “what would I need?” or “how would I feel?”, prior to entering into a conversation with a patient (Omilion-Hodges & Swords, 2016, p. 331). Similarly, one study found that learning to use statements to convey empathy, such as "I wish things were different" or "I can't imagine how overwhelming this is," helped nurses to feel more confident in EOL discussions (Styes & Isaacson, 2021, p. 110). Omilion-Hodges and Swords (2016) also described strategies such as, listening and repeating, discarding scripts, and recognizing your role, however the findings did not differentiate between different types of clinicians, and therefore, were not specific to only nursing (Omilion-Hodges & Swords, 2016). However, other studies reported on similar strategies relating directly to nurses which will be described next. While in one study, some nurses believed that simply listening to patients was essential and that no additional 'special skills' were required for communication at EOL (Clarke & Ross, 2006); other studies discussed listening as important alongside other strategies (Wiegand et al., 2019). Strang et al. (2014) reported that active presence was required for effective communication, and Andrade et al. (2019) found that attentive listening, gaze, and posture created an environment for effective communication. Similarly, one study that surveyed family members of patients in the ICU found that communication needs for EOL in the ICU included being listened to, as well as being given timely information (Norton et al., 2003). Nurses in the ICU found that timely, patient-centred communication was needed to focus on EOL discussions and identify what was most important to the patient in terms of their final wishes (Vaughn & Santos Salas 2022). In relation to timing, ICU nurses reported that giving family adequate time to make difficult decisions was important for supporting families through challenging situations (Vaughn & Santos Salas, 2022). Similarly, another study reported that timely, thorough, and clear communication helped to provide quality palliative care and build 26 relationships between patients, family caregivers, and healthcare professionals (Gonella et al., 2022). Many healthcare professionals, including nurses, reported EOL discussions should be had earlier than they currently are (Benton, 2017; Brooks, 2019; Vaughn & Santos Salas, 2022). Having EOL discussions earlier could help to determine a patient’s wishes prior to their potential deterioration in status, and ensure that families are also aware of a patient’s wishes in regards to EOL care (Brooks, 2019). Nurses in one study reported that failure to initiate timely EOL discussions could be due to the failure of the multidisciplinary team to come to a consensus and recognize the need for EOL care discussions (Brooks, 2019). Engaging in Transparent and Clear Communication. Studies reported that nurses utilized simple and honest communication in an effort to prepare families for difficult situations. Gutierrez (2012) reported that in their study with ICU nurses and physicians, maintaining simplicity was found to be helpful as nurses often stated they spoke with patients and families after discussions with physicians to ensure that families understood the information provided by the physicians. Gutierrez (2012) used the metaphor of “painting a picture” to describe how clinicians communicated with family members about a patient’s prognosis (p. 173). Nurses’ described themselves as playing a role in preparing families for the potential of the patient’s death to avoid families feeling blindsided when a patient nears death (Gutierrez, 2012). Similarly, in complex situations such as withdrawing life support in the ICU, an integrative review found that providing information was one way that nurses helped to prepare families for EOL (Coombs, 2016). Coombs (2016) reported that nurses would assess what information the families needed and determine what information they would provide next. For example, in the process of treatment withdrawal, nurses would explain the physical changes expected and suggest ways the family could remain involved (Coombs, 2016). Coombs (2016) also found that 27 clear, plain language communication was a key to skillful conversations in difficult situations such as when withdrawing treatment in the ICU. Additionally, researchers found that clinicians in other contexts reported clear and honest communication was important for EOL communication (Vaughn & Santos Salas, 2022; Wiegand et al., 2019). Similarly, the families interviewed in the Norton et al. (2003) study indicated that honest and clear communication was important for them as well. Empathy, honesty, and transparency were also presented as important in facilitating humanized care (Medeiros de Brito et al., 2014). Communicating With the Right Individuals. Another strategy noted in the literature to improve communication nearing EOL is to involve the appropriate individuals in EOL discussions. Considering the important players for meaningful EOL discussions included the interprofessional team (Benton, 2017; Flannery et al., 2016), the patient (Benton, 2017), and the family (Flannery et al., 2016; Gutierrez, 2012). Nurses from one study emphasized the importance of the patient’s involvement with EOL decision making, and highlighted this as a challenge if the patient had never discussed their wishes with family members, particularly if the patient no longer had the capacity to be involved in decision making (Brooks, 2019). While nurses reported finding it helpful to be involved in these discussions (Brooks, 2019), it was found that nurses were not always included in these meetings (Brooks, 2019; Flannery et al., 2016; Gutierrez, 2012). While it was not made clear why nurses were excluded from these meetings in all studies, Brooks (2019) highlighted that sometimes nurses reported not being involved in family meetings due to staffing pressures, and Flannery et al. (2016) highlighted that nurses’ involvement in EOL conversations may be contingent on physician preference or nurses’ level of experience or seniority within the team. When nurses did attend important family meetings, they were more often included as observers (Gutierrez, 2012). Nurses reported feeling 28 that if they attended family meetings, they could learn through observation how physicians have difficult conversations (Brooks, 2019). 2.3 Multidisciplinary Communication About MAiD In order to understand communication strategies regarding MAiD with a lack of research about nurses specifically, this section will highlight relevant multidisciplinary literature on the topic. The literature highlighted in this section will include challenges and strategies noted in the research that is not specifically focused on nursing. This includes studies focused on physicians or interdisciplinary teams as a whole. Physicians are the only healthcare professionals in countries other than Canada who are permitted to assess whether an individual is eligible for, and provide, an assisted death (Pesut et al., 2020d). This could be a reason why there is more literature about physicians' communication related to MAiD than nurses' communication. This section will be organized into the personal, professional, and organizational challenges and strategies surrounding multidisciplinary communication as it relates to assisted dying. The multidisciplinary team members included within the studies highlighted below include physicians, nurses, pharmacists, social workers, and other allied health professionals. 2.3.1 Personal Challenges When it comes to communicating about MAiD, healthcare professionals faced personal challenges including concern for their own psychological well-being (Mathews et al., 2021; Otte et al., 2017), and conflicting personal, moral or religious values (Gamondi et al., 2019; Otte et al., 2017; Selby & Bean, 2019). One study found that physicians described conversations about assisted dying as emotionally intense which resulted in both positive and negative outcomes (Voorhees et al., 2014). While some physicians reported that it was rewarding to be able to be present and have honest conversations with patients, other physicians reported these 29 conversations were emotionally exhausting (Voorhees et al., 2014). For example, one physician stated that when a patient brought up the topic it felt “like a knife in the heart” (Voorhees et al., 2014, p. 812). Similarly, another study found physicians reported feelings of surprise or pressure when patients brought up the topic of assisted death and reported the need for personal support throughout the process (Dees et al., 2012). One of the ways to address the challenges inherent with communicating about MAiD is through debriefing. Debriefing is discussed throughout the literature in various capacities, with both positive and negative aspects. One study found that most allied health professionals did not find unit-wide check-ins or debriefs to be helpful, with participants either finding them insensitive, insincere, or that they contributed to the idea that a MAiD death is more burdensome than other deaths; unless these sessions were accompanied by additional resources, they were largely seen as unhelpful (Mills et al., 2020). Mills et al. (2020) suggested that a delayed debrief might be more helpful as nurses often had to go back to their regular duties immediately after the death and were not able to process their feelings in the moment. On the contrary, Dees et al. (2012) found that physicians in their study were eager to participate in post-assisted dying interviews as it was an opportunity to reflect on the process, indicating that, in some cases, debriefing may be beneficial. While still important, debriefing will not be a focus of this literature review as the focus of this study is communication with patients and families rather than interdisciplinary communication as it relates to MAiD. 2.3.2 Professional Challenges Professional challenges related to communicating about MAID reported by clinicians included feeling that assisted dying is in conflict or opposition to their professional role, and experiencing a lack of competency without adequate education about how to have conversations 30 about assisted dying. Professionally, some physicians experienced a conflict with assisted dying and their role as a physician (Gamondi et al., 2019; Otte et al., 2017). Similarly, Hébert and Asri (2022) found that nurses experienced a similar paradox, that while some nurses acknowledged they could provide care to patients pursuing MAiD, they felt as if this was “taking someone’s life” which goes against what they felt nurses were trained to do (p. 1638). Palliative care physicians who felt assisted dying was in opposition to palliative care acknowledged that their opposition or ambivalence was likely a barrier to recognizing a patient’s request for help with assisted dying (Gamondi et al., 2019). Over half of the participants in the same study reported that they would not initiate a conversation or discuss assisted death unless their patient brought it up first (Gamondi et al., 2019). Furthermore, Dees et al. (2012) found that physicians felt the patient-physician relationship was strained when a patient requested assisted dying as it was contrary to their ‘curative role’ in the patient’s care. Some physicians who felt conflicted about assisted dying reported discouraging a patients’ request for MAiD in advance by making their views clear to the patient to avoid having to discuss the topic (Otte et al., 2017). Similarly, Gamondi et al. (2019) reported that physicians communicated their boundaries and level of support for assisted dying early in their conversations with patients. Dees et al. (2012) found that this was helpful in some situations as positive communication interactions occurred when physicians were clear about their boundaries. Physicians also reported experiencing a lack of competency (Gamondi et al., 2019; Mathews et al., 2021; Selby & Bean, 2019) with one study reporting that no participants in their study mentioned receiving any training on responding to requests for assisted dying; rather, they had learned by experience or through policies and guidelines (Gamondi et al., 2019). Winters et al. (2022) highlighted this further describing that early adopters of MAiD learned about 31 addressing these requests through various ways including individual reading or collaboration with peers, with few participants having access to formal education. Healthcare professionals in some studies reported uncertainty on when or how to introduce a discussion about MAiD (Ho et al., 2021; Mathews et al., 2021). In a study including both nurses and physicians, Mathews et al. (2021) noted that physician participants were concerned that introducing the topic of MAiD might be seen as an invitation to request MAiD and worried about encouraging the choice one way or the other. Similarly, a study completed with interdisciplinary palliative care experts reported "trepidation" when it came to initiating conversations about MAiD (Ho et al., 2021). To address these challenges with initiating conversations about assisted dying, Oczkowski et al. (2021) recommended "clear and consistent” policy and practice on how to bring up MAID (p. 517). Practicing challenging conversations through role play, organizing mentorship opportunities, and developing a clinician toolkit for communication resources were ways one study found supported clinicians with communication challenges (Oczkowski et al., 2021). To determine the underlying reason for a request for an assisted death, competent communication is essential. (Dees et al., 2012; Gamondi et al., 2019; Otte et al., 2017). One study found that, while it was potentially challenging, opening up conversations about assisted dying could benefit doctor-patient relationships and lead to more in-depth discussions about other important EOL issues as well (Voorhees et al., 2014). Dees et al. (2012) found that having a conversation about assisted dying was helpful in order to help patients organize their thoughts and express their feelings. Strategies used by physicians in conversations about assisted dying included showing empathy (Dees et al., 2012), using existing criteria and forms as a guide for communication (Voorhees et al., 2014), and getting to know the patient to learn the motivations behind the request (Gamondi et al., 2019; Voorhees et al., 2014). It was also noted as important 32 to ensure that patients making requests for assisted dying had access to relevant information (Gamondi et al., 2019; Oczkowski et al., 2021) including information about related organizations and alternatives to assisted dying, or referrals to additional professionals if necessary (Gamondi et al., 2019). 2.3.3 Organizational Challenges Organizationally, lack of time, interdisciplinary collaboration, and human resources are all factors that affect communication and the MAiD process. Physicians acknowledged a lack of time as a barrier to communication about assisted death in a busy clinical setting (Selby & Bean, 2019). Similarly, nurses voiced the challenge of time as a barrier to care and led to feelings of frustration and from the research participants (Bellens et al., 2020). Participants in one study believed that more collaboration between palliative care physicians and right-to-die societies would improve patient care, particularly as the right-to-die societies could provide better coordinated information and services (Gamondi et al., 2019). However, some physicians felt connecting with these societies should be the patient’s responsibility (Gamondi et al., 2019). Additionally, Oczkowski et al. (2021) reported that participants voiced concern that the high turnover of MAiD clinicians and a small number of clinicians that provide MAiD with an increasing number of MAiD requests would affect the quality of care and time available for providers to support patients. It was found that, in some cases, with so many healthcare services being accessed by patients and their families, it was not always clear who would provide the emotional support to the patients and families (Oczkowski et al., 2021). To address this need, participants in the same study suggested that the creation or utilization of centralized MAiD coordination services that would follow a patient throughout the healthcare system would be beneficial (Oczkowski et al., 2021). 33 2.4 Nurses’ Communicative Experiences in the Context of MAiD Many studies have looked at nurses’ experience with assisted death in Canada and internationally (Bellens et al., 2020; Dierckx de Casterle et al., 2010; Hébert & Asri, 2022; Pesut et al., 2020c, 2020d). This section focuses on the studies that have looked at nurses’ overall experiences with assisted dying that mention communication in some way. These studies found that the experience of nurses’ involvement in MAiD is multifaceted, with both rewarding and challenging impacts. For example, one study found that nurses’ involvement with assisted dying was intense, emotional, morally complex, and professionally rewarding (Bellens et al., 2020). While varied experiences arise, this literature review will focus specifically on the importance of communication and associated challenges in contexts where assisted death is legal. 2.4.1 Importance of Communication Throughout the literature, nurses reported communication as an important factor throughout the process of assisted dying to support interdisciplinary communication and conversations with patients and families. In a study including hospital nurses in Belgium, nurses voiced the importance of being involved in the decision-making process in relation to assisted dying and fostering interdisciplinary communication (Dierckx de Casterle et al., 2010). When nurses are not involved in the decision-making process it is often perceived as a lack of respect for the nurses’ expertise (Dierckx de Casterle et al., 2010). In a more recent study in Belgium, where hospital and home care nurses were interviewed, participants stated that good communication between nurses and doctors in the assisted dying process was essential for good care (Bellens et al., 2020). Nurses in studies in Belgium and Canada noted that communication skills were important to clarify the nature of a request for assisted death (Dierckx de Casterle et al., 2010; Pesut et al., 2020d) and to ensure that patients felt comfortable expressing their wishes 34 to them (Pesut et al., 2020c). Similarly, Hébert and Asri (2022) found that nurses stressed the importance of listening as an essential communication strategy. One study found that having an open mind and being responsive to what patients were saying helped ensure that a request for assisted death did not come as a surprise to the healthcare team (Dierckx de Casterle et al., 2010). In addition, being prepared for such a request allowed the team to respond in a way so that the patient understood that their request was being taken seriously (Dierckx de Casterle et al., 2010). Dierckx de Casterle et al. (2010) reported that nurses were often the clinicians who explained the assisted dying process and what to expect at the time of provision to the patient and family. For this reason, communication skills for nurses are essential. These studies have found that, with time and experience, nurses can begin to feel more comfortable in their communication surrounding requests for assisted dying (Bellens et al., 2020; Pesut et al., 2020d). 2.4.2 Challenges of Communication Some challenges experienced by nurses noted in the literature include difficulty understanding a patient’s request for assisted death, finding the experience highly emotional and upsetting, and experiencing conflicting emotions (Bellens et al., 2020). Despite communication being one of the most important tools in providing quality care in assisted dying (Bellens et al., 2020), studies discuss the challenges of communication as a common factor (Bellens et al., 2020; Hébert & Asri, 2022; Pesut et al., 2020d; Ward et al., 2022). Since MAiD has only been legal in Canada since 2016, previously, nurses were not legally allowed to initiate conversations about assisted death (Sheridan, 2017, p. 41). Even as MAiD became legal in Canada, it was not immediately clear what communicative role nurses could legally take on within the MAiD process (CNA, 2016). A Canadian study found that, after MAiD first became legal, some nurses reported working in contexts without policy or guidelines developed in their workplace, creating 35 uncertainty in their practice (Pesut et al., 2020c). This led RNs, in particular, to feel uncertain about their professional boundaries in these conversations (Pesut et al., 2020d). Another study also found that nurses struggled to know what to say to patients who inquire about MAiD, with nurses voiced they felt they had a “lack of tools” (Hébert & Asri, 2022, p. 1642). Even now, recommendations from the Canadian Nurses Protective Society (CNPS) surrounding MAiD state that while nurses can “share information and engage in discussions about MAiD with their patients,” they must be mindful not to “encourage or incite a patient to seek MAiD” which would be deemed a criminal offence in Canada (CNPS, 2021, Nurse Practitioners section). As a new practice, with few guidelines or policies in place, many nurses voiced feeling like they were creating new nursing knowledge as they practiced (Pesut et al., 2020d). In certain situations, communication led to negative feelings surrounding the MAiD process. For example, nurses reported negative experiences if they had difficulty understanding a patient’s request for MAiD (Bellens et al., 2020), if they felt speechless or unsure of what they could say (Bellens et al., 2020; Pesut et al., 2020d), or if they did not have enough time for what they felt was appropriate conversation (Bellens et al., 2020; Pesut et al., 2020d). In addition, nurses also struggled with negative feelings if communication was made more difficult due to the overwhelming sadness of patients’ families (Bellens et al., 2020). One study described specifically how the known imminent death of a patient left nurses unsure of how to communicate with the patient, leaving patients with mixed emotions and uncertainty (Ward et al., 2022). 2.5 Communication When Assisted Death is not Legal This section will briefly discuss nurses’ communicative practices in contexts where assisted death is not legal. This is important to consider as this was the context that nurses were 36 working in prior to 2016 and remains the situation for many nurses worldwide. Further, many of these experiences may persist if nurses are uncertain about where the communication boundaries lie even when MAiD is legal. By reviewing the context of nurses communicating in situations where assisted dying is not legal, the complexity of communication around EOL, particularly related to assisted death is highlighted. Healthcare providers face a unique situation when patients request a hastened death in contexts where it is not legal. In this case, healthcare providers have had to learn ways to communicate that maintain therapeutic relationships with patients. This section focuses on the challenges experienced by nurses when faced with a patient who requested assisted death when it was not legal within that jurisdiction, followed by the strategies and actions nurses took when responding to such requests. 2.5.1 Challenging Experiences Multiple studies have reported that nurses experience challenges responding to requests for unlawful assisted death, including negative feelings, distress, or fear (De Bal et al., 2008; Matzo & Schwarz, 2001). In a study completed before assisted dying became legal in Belgium, nurses found their involvement in caring for a patient requesting euthanasia to be intense (De Bal et al., 2008). This close involvement invoked negative feelings, including anxiety (without knowing how to respond), guilt (due to not having enough time to support the patient), moral upheaval, distress, and, most commonly, a sense of powerlessness when patients or families requested euthanasia (De Bal et al., 2008). De Bal et al. (2008) noted that the extent of powerlessness was sometimes associated with the amount of time a nurse had for patient care. For example, if a nurse was too busy to spend time with a patient to explore the request, this could have caused distress for the nurse (De Bal et al., 2008). In addition, Matzo and Schwarz (2001) reported that some nurses found the fear of doing something illegal affected their 37 willingness to have an honest conversation about assisted death with a patient. On the contrary, some nurses felt more positive if they could openly discuss the request and the associated emotions (De Bal et al., 2008). Nurses occasionally experienced positive feelings when they received a request for an assisted death. For example, receiving this request made some nurses feel they were trusted, increasing their sense of responsibility for the holistic care of the patient (De Bal et al., 2008). 2.5.2 Strategies Nurses used various strategies to address the challenges they faced when responding to a request for an assisted death where it was not an option. Nurses who frequently received requests for an assisted death reported learning how to respond over time compared to initially when such a request would take them by surprise (De Bal et al., 2008). In one study, a nurse reported that even if they felt like “running away,” the nurse would try to stay calm and stay with the patient to “see what will come” (De Bal et al., 2008, p. 593). De Bal et al. (2008) found that, upon receiving a euthanasia request, nurses would work to comfort their patients. However, nurses reported that this was more difficult if physicians continued to ignore the request (De Bal et al., 2008). Being present and available (Schwarz, 2004; Wright et al., 2017) and maintaining personal boundaries (Schwarz, 2003, 2004) were two other strategies nurses used when responding to requests for hastened death. While some nurses were clear about their boundaries and were explicit in their communication to patients that they would not be able to help with their request, other nurses may have utilized implicit communication to provide information to family members that might help the family act on patient wishes (Schwarz, 2003). For example, Schwarz (2003) reported one nurse as stating to a family, “you have the medication... if you want to give more, that’s up to you” (p. 382). Schwarz (2004) highlights that this moral line differed 38 for each nurse and was informed by many different aspects of their personal and professional life, including values, beliefs, and experiences. 2.5.3 Interpreting the Meaning Behind the Request In studies focusing on jurisdictions where assisted death was not legal, nurses often identified the need to interpret the patient’s desire for death (De Bal et al., 2008; Schwarz, 2003, 2004; Wright et al., 2017). This included not taking the request at face value and taking time to explore what hidden meaning or unmet need might have been present behind the request (Schwarz, 2003), paying attention to verbal and non-verbal cues to determine what exactly was important to the patient (Wright et al., 2017), and listening to understand what the request for hastened death might have meant for the patient (Wright et al., 2017). Nurses in one study described a request for euthanasia from a patient as a “cry for help” (De Bal et al., 2008). For example, a patient might have made a request to die when what they actually wanted was relief from physical or psychological suffering (Schwarz, 2003). This idea is reinforced when nurses reported that if patients felt their end-of-life wishes would be honoured, they rescinded their request to die (Schwarz, 2003). Nurses reported that their feelings were complicated if they could not fully understand the patient’s thoughts and feelings behind the request (De Bal et al., 2008). 2.5.4 Maintaining a Therapeutic Relationship Maintaining a therapeutic presence remained important but challenging in these difficult situations (Wright et al., 2017). In one Canadian study, where data was collected just before the legislation was passed for MAiD, researchers found that, while nurses stated they felt honoured that patients brought up the topic with them, not being able to thoroughly discuss the topic may have limited the therapeutic relationship (Sheridan, 2017). To support the moral conflict felt by nurses, some nurses spoke of psychologically releasing the patient’s request (i.e., ignoring it in 39 their minds) to maintain emotional distance, watching their personal limits, and making the most of their time with their patients (De Bal et al., 2008). De Bal et al. (2008) found that when nurses received a request for assisted dying, they would attempt to comfort their patient but felt this was made more difficult if physicians were not listening or focusing on the patient’s request as well. In one study, some nurse participants voiced their preference for assisted death to be legal to allow for more open conversations about the topic (De Bal et al., 2008). Overall, the literature on nurses’ experiences with assisted death when it is not legal provides interesting insights into communicative issues and challenges that nurses have confronted historically, setting the context for ongoing considerations of what has changed now that the legalizing of MAiD has provided another option for them to include in their responses to requests about hastening death. 2.6 Primary Focus on Nurses’ Communication and MAiD: A Scoping Review In this final section, the results are presented of a scoping review that was completed as part of this thesis to determine the extent of the empirical literature that focused exclusively on nurses’ communicative practices related to MAiD. The appendix highlights the methods for this scoping review (Appendix A), including the search strategy (Appendix B), PRISMA diagram (Appendix C), and data extraction table (Appendix D). An inclusion criterion for this scoping review was that studies indicate findings that were explicitly attributable to nurse study participants. This section will highlight the findings from the two articles that resulted from the scoping review. The articles varied in their approach to studying nurses’ communicative practices in assisted dying. The first study by Ho et al. (2021) focused on the Canadian context and explored how the MAiD legislation affected end-of-life discussions between patients and multidisciplinary palliative care providers. Ho et al. (2021) interviewed a multidisciplinary participant group in two major cities, including 15 nurses, with participants having experience in 40 acute care, community care, or hospice care settings. This study produced themes surrounding how MAiD affects EOL discussions with care providers. The second study by Denier et al. (2010) took place in Belgium and described communicative practices throughout the euthanasia process from the nursing perspective. Denier et al. (2010) included 18 male and female nurses across various geographic locations in Flanders, Belgium, with varying workplaces and religious affiliations. The themes discussed in this study included communication between professionals and patients and their families and interprofessional communication strategies. First, common themes between both studies will be discussed, followed by a discussion of themes that vary between the two articles. 2.6.1 Common Themes Gaining Clarity and Certainty. The first theme addressed by both studies was the importance of gaining clarity and certainty about a patient’s request for assisted death. Both studies highlighted that when a patient brought up the topic of assisted dying, it was part of the nursing role to clarify what the patient meant by their request, particularly if the request was ambiguous (Denier et al., 2010; Ho et al., 2021). For example, Ho et al. (2021) highlighted that patients did not always know their options at end-of-life and might be referred to the MAiD team because a healthcare professional heard them say, “I want to die” (p. 5). However, after further conversations with the patient, MAiD was not actually what the patient was looking for when they made that statement (Ho et al., 2021). Similarly, Denier et al. (2010) discussed the importance of gaining certainty within the patient’s request to ensure the nurses fully understood the meaning behind the request. Understanding a patient’s perspective on the request for an assisted death helped the nurse support the patient and supported the nurse’s experience of the process (Denier et al., 2010). 41 Open, Non-Judgemental Communication. Secondly, both articles discussed the need for open, non-judgmental discussions. Using open-ended questions and actively listening to responses were part of nurses’ strategy when engaging in conversations about assisted death (Denier et al., 2010; Ho et al., 2021). Denier et al. (2010) found that most nurses reported the importance of being able to care for the patient openly and honestly. If policies or a physician’s stance created a situation where they could not answer a patient’s questions honestly, nurses found the experience much more difficult (Denier et al., 2010). One participant explained the significance of talking openly about the importance of the MAiD request for the patient (Ho et al., 2021). If MAiD, in particular, was found to be very important for a patient, the nurse then knew to monitor the patient’s capacity and advocate for them if there were a chance the patient would lose their capacity to consent to MAiD (Ho et al., 2021). Another nurse participant in the same study acknowledged that these conversations are iterative, with multiple ongoing conversations with patients, family, and team members (Ho et al., 2021). Complexities of Navigating Conversations. Thirdly, both articles discussed the complexities of navigating conversations between the nurse and patient, between patient and families and between healthcare professionals. Challenges highlighted in the literature included managing situations where the patient does not want the family to know about their decision before their death (Ho et al., 2021), helping to navigate and clarify conversations between patients and physicians (Denier et al., 2010), and managing situations where a patient may have been told one thing from a healthcare professional but the nurse may see their care as seeming contradictory to what the patient was told (Denier et al., 2010). These situations can be a burden on nurses to navigate independently (Ho et al., 2021) and can leave nurses feeling “trapped” 42 between supporting patients and following hospital policies or physician orders (Denier et al., 2010, p. 44). Providing Advice. Interestingly, providing advice was brought up in differing ways in both articles. Denier et al. (2010) highlighted providing advice as an important form of communication while also taking time to listen and talk with the patient and family members. On the other hand, Ho et al. (2021) presented a concern that participants had about communication at EOL in the context of MAiD and the worry about influencing a patient’s decision. This concern may be particular to certain jurisdictions as some nursing regulatory bodies have indicated that nurses are not to initiate conversations about MAiD (Ho et al., 2021). 2.6.2 Differing Themes Each article included in this scoping review discussed at least one theme that was not mentioned in the other article. These themes included a discussion on the congruence of MAiD and palliative care, and the importance of discussing other EOL options (Ho et al., 2021), as well as focusing on the development of coping skills and professional development related to assisted dying (Denier et al., 2010). Ho et al. (2021) explained that where nurses struggled to accept MAiD as an option at EOL, participants stated that MAiD should be “the last option,” that other EOL options should be explored with the patient first, and that a “frank discussion” about symptom management options could lead to some patients not requiring MAiD at all (p. 6). Denier et al. (2010) found that participants focused on coping and developing the skills required for their professional role to support the patient. Nurses reported various coping mechanisms, including talking with colleagues and family and engaging in physical activity (Denier et al., 2010). Participants in the study also discussed the gradual improvement of their professional skills, such as knowing what to do, which questions to ask, and feeling more 43 comfortable and less avoidant of these conversations over time (Denier et al., 2010). In terms of a nurse’s experience of participating in the assisted dying process, factors that affected their feeling about the process included the degree of their involvement within the process, the amount of time they had to care for the patients, and their ability to be transparent with their patients (Denier et al., 2010). 2.6.3 Strengths and Limitations These two studies are the few studies that focus exclusively on communication by nurses as it relates to assisted death. Both articles focused on the processes of communication and assisted dying in settings where the procedure is legal. This is helpful as other literature focusing on communication does so in contexts where healthcare professionals cannot legally support patient requests for assisted death. While some characteristics are similar, whether legal or not, these two studies allowed nurses to discuss communication strategies without fear of indicating any illegal action taken on their part. Both studies utilized semi-structured interviews enabling the participant to recount their experience of working with a patient requesting assisted death (Denier et al., 2010) and to consider their experiences of engaging in end-of-life discussions before and after MAiD became legal in Canada (Ho et al., 2021). A strength of both studies is the thorough explanation of methods used for data analysis, including their confidence in the adequacy of their data with respect to the conclusions drawn (Denier et al., 2010; Ho et al., 2021). Multiple limitations are present in this scoping review. First and most prominent is the lack of literature studying nurses’ communication strategies. One of the two studies that directly discussed communication and assisted death focused on a multidisciplinary team, with less than half of the participants being nurses (Ho et al., 2021). Although the authors highlighted which 44 findings came from nursing participants, which allowed for inclusion in the scoping review, some findings were only supported by non-nursing healthcare professionals and were therefore not included in the scoping review themes (Ho et al., 2021). Additionally, Denier et al. (2010) acknowledged that their participants were located only within the hospital setting. Therefore, their findings cannot reflect communication about assisted dying within home care and residential care settings. As both articles are qualitative in nature, include small sample sizes, and reflect limited geographical and clinical setting variation, the findings may not be generalizable. For example, Ho et al. (2021) only interviewed participants from two large cities in Canada, and Denier et al. (2010) focused only on one region within Belgium. With assisted dying being newly legal and a potentially contentious topic for healthcare professionals in Canada at the time of the data collection, Ho et al. (2021) acknowledged that there may have been bias within the interviews, with participants desiring to be portrayed in a certain way. Ho et al. (2021) also acknowledged that their recruitment strategy may have left out professionals who were not known to the research team or who did not have access to the listservs used to recruit participants for this study. Thus, this scoping review highlights that little research has been conducted on this topic, particularly for nurses, and concludes with a call for further research. 2.7 Chapter Summary Communication is an essential skill for healthcare providers when it comes to EOL. However, while communication at EOL has been the focus of considerable research, little research has been completed on nurses’ communicative practices regarding assisted dying. This chapter first discussed the patient or family, clinician, or system challenges that nurses face when communicating at EOL, along with strategies that have been highlighted to address these 45 challenges. Next, communicative practices surrounding MAiD were highlighted, starting with multidisciplinary experiences and then narrowing the focus to nurses’ experiences in contexts where MAiD is legal as well as illegal. Finally, this chapter presented the results of a scoping review related specifically to nurses’ communicative practices and assisted dying. While the scoping review indicates that similar strategies to those used during EOL care, such as open, honest, empathetic communication, are also relevant in assisted dying, more research is required in this area. This gap in the literature about how nurses communicate about assisted dying will be addressed within this research project focusing on nurses’ communicative practice regarding MAiD in Canada. 46 Chapter 3: Research Methods 3.1 Overview This chapter includes a description of the research approach used throughout my thesis as well as more specific details of the research methods used. The chapter will begin by providing a rationale for using Interpretive Description for nursing research. Next, specific research methods used throughout this study will be described. Of note, in this chapter, I will be using the term “original study” to refer the original MAiD research project that was conducted in 2016 and “secondary analysis” to refer to my thesis. Throughout this chapter, I describe the methods of both the original study and the secondary analysis where appropriate. The research methods will be followed by strategies used to maintain quality within Interpretive Description and the ethical considerations made throughout this project. Finally, the chapter will conclude with a discussion of how I practiced reflexivity within the project to reduce bias within the resulting research. 3.2 Research Approach Interpretive Description is a research approach developed by Sally Thorne, Sheryl Kirkham, and Janet MacDonald-Emes in 1997 to meet the needs of applied health researchers, specifically those within the nursing discipline (Teodoro et al., 2018; Thorne, 2016; Thorne et al., 1997). As nurse researchers took up qualitative research, they borrowed methodologies from the social sciences such as ethnography, grounded theory, and phenomenology (Thorne, 2016; Thorne et al., 1997). These methodologies are grounded within the theoretical realm, and therefore, risk producing findings that cannot be readily applied in clinical practice (Teodoro et al., 2018; Thorne, 2016). Historically, this resulted in the quality of nursing research being compromised without a specific methodology that met the practical needs of health researchers (Thorne, 2016; Thorne et al., 1997). The need for a research method that would allow nurse 47 researchers to understand complex phenomena, answer practical questions, and advance clinical knowledge is what drove Thorne (2016) to develop Interpretive Description. Interpretive Description allows for flexibility in methods, drawing upon strategies used in other research methodologies that meet the needs of the intended research (Thorne, 2016). Interpretive Description was chosen for this study as it is a qualitative research approach that provides a flexible framework for research that blends theory and practice (Thorne, 2016). Interpretive Description is ideal for investigating research questions that focus on generating practical knowledge in a logical, systematic and justified manner (Teodoro et al., 2018; Thorne, 2016). Given the primary research question of this thesis is ‘How do nurses describe their communicative practices related to Medical Assistance in Dying in Canada?’ with secondary questions aiming to identify important characteristics and challenges of communication related to MAiD, Interpretive Description is an appropriate methodology that will maintain methodological integrity and report on practical findings that can be implemented within the nursing discipline. 3.2.1 Philosophical Underpinnings Both ontological positions and epistemological assumptions underpin qualitative research. Ontological positions specify how researchers see the world and the nature of reality (Braun & Clarke, 2013; Levers, 2013). Ontology asks the ongoing question of whether reality exists outside of the human experience or if reality exists through human experiences (Levers, 2013). While not explicitly stated within the literature, it seems that Interpretive Description is positioned within a relativist ontology in which reality depends on human interpretation and knowledge (Braun & Clarke, 2013; Levers, 2013). A relativist ontology aligns well with the 48 characteristics of Interpretive Description described in section 3.2.1, such as the existence of multiple realities and negotiated truths (Levers, 2013). Epistemology refers to what counts and what does not count as knowledge and how a researcher might make sense of the world (Braun & Clarke, 2013; Levers, 2013). Levers (2013) describes two opposing epistemological stances of objectivity and subjectivity. Objectivism is the belief that truth and meaning exist outside of the human experience, and subjectivism is the belief that knowledge is always filtered through the human experience (Levers, 2013). Thorne (2016) writes that Interpretive Description situates itself between an objective and subjective reality. Because Interpretive Description allows researchers to borrow research strategies from multiple sources to meet the “context, situation, and intent” of the research (Thorne, 2016, p. 30), it further allows for research that matches the specific epistemology of the nursing discipline or other applied health disciplines (Hansen et al., 2021). Described more thoroughly by Thorne and Sawatzky (2014), nursing as a discipline requires both objective and subjective knowledge. Objective knowledge refers to the required empirical, evidence-based knowledge, and subjective knowledge refers to a particular nurses’ multiple ways of knowing and how they might apply that knowledge to a particular context (Thorne & Sawatzky, 2014). Due to the flexible nature of Interpretive Description studies, researchers must articulate the epistemological standpoint they utilize throughout their research paper to ensure methodological integrity (Thorne, 2016). Personally, I lean towards subjectivity and the idea that multiple realities exist in the world, while also understanding that objective knowledge is important, particularly as it relates to specific skills within nursing. Although I do not necessarily believe that there is one correct true way of seeing the world, I do believe objective knowledge that can be applied across settings is helpful in guiding nursing practice. For this research project, objective principles may 49 emerge that could guide nurses in their communication strategies in multiple situations. Additionally, subjective knowledge may emerge that could provide insight and strategies that nurses might use in particular interactions with individuals depending on the context. From a subjective perspective, I understand that as I move through the literature, data, and move into findings, my own perspective and experiences will shape the process. Thorne (2016) acknowledges that “no human being is immune from theoretical influence (and bias)” (p. 77), indicating that Interpretive Description acknowledges the influence a researcher’s perspective and experience may have on the research findings and highlights the importance of recognizing this within the research process (Thorne, 2016). Within the data analysis section of this chapter, I explain how I aimed to ensure academic rigor and reduce my biases from affecting the research. Philosophical underpinnings of Interpretive Description come from the naturalistic inquiry tradition of Lincoln and Guba (Thorne, 2016; Thorne et al., 2004). Naturalistic inquiry involves studying people “in everyday circumstances by ordinary means” to bridge the gap between researchers and humanity (Beuving & de Vries, 2015, p. 15). This method of inquiry meets the needs of Interpretive Description with the aim of moving from purely theoretical to more practical research (Thorne, 2016). Thorne (2016) highlights seven key ideas representing the epistemological standpoint of Interpretive Description rooted in naturalistic inquiry. First, Interpretive Description studies should be conducted in “as naturalistic a context as possible” while also respecting the comfort and ethical rights of research participants (Thorne, 2016, p. 82). Secondly, researchers should value “subjective and experiential knowledge as one of the fundamental sources of applied practice insight” (Thorne, 2016, p. 83). In applying these first two principles, the researcher studies a phenomenon as it is naturally in the world, as 50 perceived by research participants, rather than being part of a researcher-controlled experiment (Beuving & de Vries, 2015; Thorne, 2016). While data collection of the original study was not completed within the context that nurses work, the researchers asked the nurses to share their experiences and did not aim to control any aspect of their experience. Additionally, allowing the nurses to choose the time and location of the interview respected the comfort and ethical rights of the nurses given the moral complexity of the topic. Thirdly, Interpretive Description studies “capitalize on human commonalities as well as individual expressions of variance within a shared focus of interest” (Thorne, 2016, p. 83). The original study was conducted acknowledging that there may be commonality experienced between nurses in regards to MAiD as well as variability in experiences. As I completed the secondary analysis, I maintained this awareness of similarities and differences in the accounts of various nurses with respect to their communicative practices in relation to MAiD. Fourth, Interpretive Description studies “reflect issues that are not bounded by time and context, but attend carefully to the time and context within which human expressions are enacted” (Thorne, 2016, p. 83). The data collected for the original study were collected in the early years following MAiD legislation in Canada in 2016. This is important to consider because, while the concepts explored within the interviews were not new, the legal practice of MAiD in Canada was new and unique to the nurses participating in the research. Researchers must be aware of how the chosen data collection method, recruitment strategy, and the context in which research is conducted might impact their ability to generalize findings (Burdine et al., 2021; Thorne, 2016). It is important to consider the unique timing and context of the interviews in this study when interpreting the findings of the secondary analysis to determine whether the findings are transferrable, given that the secondary analysis has been completed some years following the 51 original interviews which were completed when MAiD care was a relatively new practice for many nurses. The fifth and sixth key principles of Interpretive Description state that the human experience is inseparable from social construction and acknowledge that the human experience involves multiple constructed realities (Thorne, 2016; Thorne et al., 2004). Thorne (2016) and Thorne et al. (2004) highlight that these multiple realities may be contradictory at times and should be studied holistically. Interpretive Description rejects the idea of a single truth with respect to human experiential phenomena and assumes the existence of multiple realities (Hansen et al., 2021; Hunt, 2009; Lasiuk et al., 2013). The products of Interpretive Description studies should aim to provide a “coherent conceptual description” that characterizes a phenomenon that also accounts for variations within the phenomenon (Thorne et al., 2004, p. 4). This research allows for multiple perspectives as it includes nurses who support MAiD as well as nurses who are conscientious objectors to MAiD. The research does not lean towards one point of view being better than the other, it simply works to highlight various viewpoints on the topic. While allowing for multiple perspectives and variations within a given context, the goal of Interpretive Description remains to generate findings of practical importance (Thorne, 2016). Section 3.3.3 and 3.3.4 further detail the methods of data collection and analysis that allow for the consideration of multiple perspectives and generation of practical findings. Finally, Interpretive Description studies “acknowledge an inseparable interaction between the knower and the known, such that the inquirer and the “object” of that inquiry influence one another in the production of research outcomes” (Thorne, 2016, p. 83). This idea stresses the importance of acknowledging positionality as a researcher and how that will impact research findings as researchers are the ones who determine what counts as data and how 52 findings will be constructed (Thorne et al., 2004). The final section of this chapter will address my own positionality as a researcher and how I aimed to acknowledge and address this within my research. 3.3 Study Design 3.3.1 A Note on Language Thorne (2016) discusses the idea that the term used to refer to research participants is indicative in some ways of the philosophical position of the research. While Thorne (2016) describes various words used within different methodologies, such as “informant” or “coresearcher”, she concludes that “study participant” is a standard and relatively neutral term free from unintended “baggage” of certain terms (pp. 102-103). For this research, I refer to the study participants as “nurses” to acknowledge the disciplinary knowledge they bring into the research study. 3.3.2 Sample 3.3.2.1 Sampling Strategy. Interpretive Description as a research approach does not require any specific method of participant recruitment (Teodoro et al., 2018). More importantly, researchers must consider the goals of the project, representation, and expected sample size when considering selecting research participants (Teodoro et al., 2018). Strategies used frequently for participant recruitment include purposive, convenience, and theoretical sampling (Hunt, 2009; Teodoro et al., 2018; Thorne et al., 2004). Regardless of the strategy used, researchers must consider how their decisions on participant sampling will impact their limits in the interpretation of findings (Teodoro et al., 2018). Original study. The researchers in this study used convenience, purposive and snowball sampling techniques to recruit nurses for the research project (Pesut et al., 2020c). While 53 convenience sampling can be helpful in describing a specific phenomenon, it can lead to challenges in applying the findings beyond the context of the research participants (Thorne, 2016). Purposive sampling can lead to a more representative sample of participants as researchers can recruit participants based on specific experiences (Thorne, 2016). For example, in this study, it was important to interview nurses who chose to participate in MAiD as well as those who chose not to participate to gain a better understanding of the varied perspectives of nurses. Robinson (2014) recommends researchers identify in advance the main groupings or conditions they hope to include in their study to guide them in their recruitment process. The researchers in the original study aimed to collect data from nurses across the country. By collecting data from multiple provinces through purposive sampling, some of the challenges of convenience sampling could be overcome as it led to a more representative sample in the Canadian context. Snowball sampling was used to recruit further nurses as well. After each interview, nurses were asked if there was anyone they knew that would want to participate in the research. If the nurse knew of any other nurses, they would contact that person and that person would then contact the researchers to connect to the project. Secondary Analysis. For my research project, I used purposive sampling to select interviews from the original study that provided the most complete and nuanced description of communication in the context of MAiD. I selected interviews with both NPs and RNs as they are likely to have varied communication strategies due to their varied role. Additionally, I aimed to include interviews from both nurses who participate in MAiD as well as those who chose not to participate. The selection of interviews is discussed in more detail in section 3.3.2.4 Sample Size. 3.3.2.2 Recruitment Strategy. 54 Original Study. In order to recruit nurses for this study, bulletins were distributed to reach potential nurses through organizations such as the Canadian Nurses’ Association, various health regions, and the Canadian Association of MAiD Assessors and Providers. If interested, nurses could reach out to researchers to voice their interest in participating in the study. Nurses were recruited from English speaking provinces. The territories were omitted because at the time of the study, very few MAiD provisions had been completed in the territories according to national reporting (Health Canada, 2020). Once recruited, nurses were also asked to pass on research project information to others who might be interested in taking part in the study for further recruitment. 3.3.2.3 Criteria for Sample Selection. Original Study. Nurses were included in the study if they were RNs or NPs with previous experience caring for patients requesting or receiving MAiD, or RNs or NPs who had decided not to participate within the MAiD process. Thorne (2013) discusses that utilizing multiple sources for data collection can be helpful due to the varied, diverse perspectives within the nursing field. While Thorne (2013) acknowledges the impact singular exemplars or case studies can have, she emphasizes that with multiple perspectives, the risk that findings and interpretations are based on unique features of a single story can be reduced. As the original study used convenience sampling, it is not possible to know how many nurses were reached in recruitment. A total of 59 nurses were interviewed in the original study. No nurses withdrew from the study or asked to have their data removed. Nurses from across Canada were included in the original study with nurses from British Columbia (n=28), Ontario (n=16), Manitoba (n=7), Alberta (n=5), Newfoundland and Labrador (n=2), and Saskatchewan (n=1) included in the study. The nurses varied in age (age 25-44 55 [n=27], age 45-64 [n=29], and age >65 [n=3]) and experience (2-4 years [n=4], 5-9 years [n=10], 10-14 years [n=13], 15-19 years [n=4], 20-24 years [n=6], and >25 years [n=22]). The majority of the nurses interviewed were female (n=56) and identified as Caucasian (n=57). In regards to the working context of the nurses included in the original study, more than half of the nurses worked in Home & Community Care (n=32), with the next most common work context being acute care (n=10), followed by long term care (n=5), hospice (n=4), clinic (n=3), and other settings (n=5). The nurses in this study described being involved in a significant number of conversations with patients about MAiD with 24 of the nurses having greater than 25 conversations with patients. 3.3.2.4 Sample Size. Interpretive Description studies can be completed without a strict requirement for sample size (Thorne, 2016). In general, the sample size depends on the existing state of the knowledge related to a clinical question as well as the expected level of theoretical development that study aims to achieve (Teodoro et al., 2018; Thorne, 2016). For example, if researchers are looking for in-depth, nuanced depiction of a certain experience that has been previously studied broadly, a small sample size of carefully selected participants may be appropriate (Thorne, 2013). For this project, I reviewed each interview from the original study and chose to include all 42 interviews that contained data regarding the communicative practices of nurses related to MAiD. By including all 42 interviews, I ensured that as many perspectives of communication were included in the research as possible. 3.3.3 Data Collection The interviews from the original study were conducted between the fall of 2018 and the spring of 2019, two years after MAiD legislation passed in Canada. Semi-structured interviews were conducted via telephone with a few exceptions completed in person. These interviews were 56 conducted by the principal investigator along with the research coordinator for the project. A consent form was provided to the nurse participants 24 hours prior to the interview and provided them with the study focus and objectives (Pesut et al., 2020c). Consent was confirmed verbally prior to conducting the interviews. Throughout the research process, nurses were given the opportunity to ask questions, as well as the ability to remove themselves from the research project at any time. Thorne (2013) describes multiple methods for data collection which can be chosen based on the research question being asked. The most common methods of data collection include interviews, participant observation, and focus groups (Burdine et al., 2021), however textual material such as patient records, testimonials, and policy documents for example can also be used along with other new and emerging ideas (Thorne, 2013, 2016). In choosing the data collection method, researchers should aim to get as close to the subjective experience of the research participant as possible and be aware of the strengths and limitations of each mode of data collection from the outset (Thorne, 2016). Thorne (2016) reframes data collection in a way that rather than collecting or extracting data, researchers are making decisions about what constitutes data and how to piece it together to construct findings. From this point of view, researchers are involved in choosing what data becomes part of the data set and through this process, if done meaningfully, the data will transform well into meaningful findings (Thorne, 2013). Regardless of style of data collection, it is recommended that field notes are used to help the researcher in making connections and remembering context of data collection (Teodoro et al, 2018). 3.3.3.1 Semi-Structured Interview. The semi-structured interview guide used in the original study was developed, piloted and refined prior to data collection (Pesut et al., 2020c). 57 Once data collection began, the interview guide was refined several times based on the initial interviews. At this point, additional questions were added and some were dropped as the theoretical understandings of the researchers developed. Interviews can be an ideal method of data collection as they are relatively easy to conduct, and allows researchers to access the subjective knowledge that participants hold (Thorne, 2016). However, it is also important that a researcher understand that the language a person uses is based on their social context, and understand that participants may adjust their response to what they think the researcher might understand (Thorne, 2016). Working with individual interviews requires reflexivity and humility from the researcher to ensure that their preconceived ideas do not influence the way they interpret the data (Thorne, 2016). An area of reflection as I completed the secondary analysis as that, because I was not involved in data collection, I did not have all the contextual information that a researcher who was present during the interview would have. It was therefore imperative to have the original researchers involved in the data analysis step as they had more context to the interviews than I did. 3.3.3.2 Field Notes. Field notes can be used in qualitative research as a way to record what an interview felt like, observations noted throughout the interview that would not be transcribed, personal reactions to the interview, as well as analytic insights that arise (Braun & Clarke, 2013). Field notes were used in the original study as a way to remind researchers of the interview and create a general story line. These field notes were not coded. In the secondary analysis, I also wrote field notes which focused on my impression of the interview after the initial reading, and my own personal reflections. 3.3.4 Data Analysis 58 The data analysis process for this thesis was guided by the works of Thorne (2016) and Braun and Clarke (2006, 2013). I used thematic analysis as described by Braun and Clarke (2006, 2013) to generate themes from the data collected in the original study. Of note, in this secondary analysis I only focused on coding data related to communicative practices of nurses and therefore did not code all data within each interview, as would be required if focusing solely on Braun and Clarke’s method of thematic analysis. Thematic analysis was chosen for this study as it is a form of analysis that is flexible for use within varying research methodologies and therefore meets the needs of an Interpretive Description study and it offers an accessible entry point to analysis for a novice qualitative researcher (Braun & Clarke, 2006). Using thematic analysis, I analyzed and reported on themes related to communication from the collected data and, in addition to describing the data, I aimed to produce an interpretive analysis using both inductive and deductive analysis strategies (Braun & Clarke, 2006, 2013). The analysis started theoretically, or deductively, as I looked to answer my specific research question regarding communicative practices of nurses (Braun & Clarke, 2006). However, once I identified data related to communicative practices, I considered an inductive analytical approach to gain insight from the data (Braun & Clarke, 2006). With little research having been completed on the communicative practices of nurses in relation to MAiD, thematic analysis was well suited to this project as it allowed for flexibility in analysis and encouraged an iterative process for theme development (Braun & Clarke, 2013). Braun and Clarke (2013) offer a seven-step process for coding and analysis using thematic analysis. This process has been updated from the original six phases of thematic analysis described by Braun and Clarke (2006). The steps are as follows, and will be broken down for further discussion in the subsequent sections: transcription, reading and familiarization, 59 coding, searching for themes, reviewing themes, defining and naming themes, and writing. Using this seven-step process as a guideline, I incorporated recommendations from Thorne (2016) for data analysis specific to an Interpretive Description study. It is important to note that these steps or phases highlighted by Braun and Clarke (2006, 2013) are to be used as a guide and may be flexibly applied to meet researchers’ needs. For example, in the steps above, “coding” comes before “searching for themes.” However, for the purposes of this Interpretive Description study, beginning in the data familiarization stage, I was already considering what I was seeing in the data, which helped guide the coding process. Additionally, the process of analysis is a recursive process and researchers should not aim to move in a linear fashion from step to step (Braun & Clarke, 2006). As a result, some of these processes were completed concurrently at times throughout the data analysis phase. 3.3.4.1 Transcription. Interviews from the original study were audio-recorded and subsequently transcribed verbatim to include emotional reactions of nurses. The transcripts were de-identified and then checked for accuracy by the research coordinator. Once accuracy was confirmed, the interview transcripts were uploaded into NVivo for data management and analysis. Field notes were also completed by the interviewer after each interview to create a general storyline, record major insights as well as reflections, however these field notes were not transcribed or coded. 3.3.4.2 Data Familiarization. After transcribing the data, the next step is to become familiar with the data (Braun & Clarke, 2013; Thorne, 2013). Thorne (2013) advocates for an inductive iterative analysis process where the researcher takes time to “ponder, challenge, chew on, wrestle with and massage” data and warns against premature coding (p. 301). Premature coding could result in the researcher’s inability to move beyond the initial codes created due to 60 commitment to initial strategies used (Thorne, 2016). This initial reading and re-reading of the data is an active process and involves critically engaging with the data, questioning meaning, and searching for patterns (Braun & Clarke, 2006, 2013), and asking questions such as “what is going on here?” and “what are we learning about it?” to allow for a more holistic understanding of the data (Hunt, 2009, p. 1286; Teodoro et al., 2018, p. 6). During this process, researchers must consider ways in which they will automatically begin to categorize data (Thorne, 2016). While this automatic categorization can be helpful in gaining insights into the data, researchers should consider how this might impede their ability to construct meaningful themes from the data and risk seeing only what is already known about a phenomenon (Teodoro et al., 2018; Thorne, 2016; Thorne et al., 2004). As I began data familiarization, I read each interview, highlighted data that seemed important, and wrote notes in a working document to highlight seemingly connected concepts. In doing so, I acknowledged that data appearing to be connected in this data familiarization stage was not meant to be used to categorize the data into codes but a way of considering the various ways the data may be connected. During this data familiarization step, I also used an “analytic journal” whereby I wrote notes, thoughts and ideas throughout the process, as well as personal reflections, in chronological order (Braun & Clarke, 2013; Thorne, 2016). Within this journal I kept notes and reflections on how different ways of looking at the data could reveal different insights (Thorne, 2013). In completing these notes, I had an audit trail of my thought progression throughout the research process and be able to reflect on decisions made throughout data analysis. Thorne (2016) writes that, in keeping an analytic journal, researchers can build confidence in understanding the process they went through to get to the final conceptual understanding. 61 3.3.4.3 Coding. Braun and Clarke (2013) highlight two approaches to coding – selective coding, and complete coding. Selective coding involves identifying specific sections of the data that the researcher is interested in and selecting those sections for future coding (Braun & Clarke, 2013). On the other hand, complete coding is a process which aims to identify anything and everything of interest related to the research question within the data set (Braun & Clarke, 2013). For this secondary analysis, as the interviews cover a wide range of topics, I began with selective coding to select data that was relevant to nurses communicative practices. Once this selective coding was completed, I further developed codes based on the identification of possible themes. To begin the formal coding process, I selected four interviews to complete a preliminary coding exercise. I used broad-based codes to bring together data that appeared to be related (Thorne, 2016). I aimed to keep these codes broad and remained open to modifying and deleting codes as needed throughout the analysis process (Hunt, 2009; Teodoro et al., 2018; Thorne, 2016). I reviewed the selected interviews and grouped potentially related data together using NVivo software which allowed for ease in copying and pasting data and re-arranging data as necessary (Thorne, 2016). Following the advice of Braun and Clarke (2006), I coded for as many potential patterns as possible, and did not hesitate to place certain pieces of data in multiple categories within the initial coding process. Once I was confident in the codes I established, I worked with my supervisor to finalize the codebook. At this point, I returned to the data to apply the agreed upon codebook to all selected interviews. This initial analysis was then presented to my thesis committee to further refine the codebook and discuss areas for improvement and refinement in the analysis process thus far. These conversations with my thesis committee were beneficial to engage with multiple perspectives of the data. 62 3.3.4.4 Developing Themes. Once the codebook was approved by my committee, I began the iterative process of making sense of patterns within the data (Thorne, 2016). A theme is a central organizing concept that contains multiple ideas relating to a concept (Braun & Clarke, 2013) and is created, rather than found or discovered within the data (Braun & Clarke, 2006, 2013; Thorne, 2016). As I developed potential themes, I reviewed the codes, turning some codes into themes themselves and merging other codes together into themes. Practically, at this stage I used a visual mind map to visualize the interconnected nature of codes that had been developed (Braun & Clarke, 2006). My aim was to develop themes that were distinctive but cohesive that answered the research question (Braun & Clarke, 2013). As highlighted in earlier sections, it was necessary at this stage in the analysis to let go of codes that initially seemed important, but no longer fit into the larger analysis (Braun & Clarke, 2013). As well, I kept a “miscellaneous” category as recommended by Braun and Clarke (2006) to review at the next stage. As I worked to create themes from the data, there were a number of important factors to consider. First, frequency was not used as the most important indicator of importance (Braun & Clarke, 2006, 2013; Thorne, 2016). I aimed to ensure that my themes were not created strictly based on the frequency a certain idea presented itself in the data. Thorne (2016) also warns against premature closure whereby a researcher focuses on the first themes they consider, or create links of ideas based on superficial findings. To prevent this, I challenged myself to consider multiple possible themes, and organizational strategies and reflected consistently about what I was seeing and why (Thorne, 2016). Finally, Thorne (2016) warns against overinscription of self, stressing the importance of taking time to step back from the data as needed. To manage this, I took time away from the data as needed and maintained reflexivity throughout the process 63 to consider what data was the most meaningful to answer my research question (Braun & Clarke, 2006, 2013). 3.3.4.5 Reviewing Themes. After developing an initial set of themes, I reviewed the themes overall and considered if all themes remained relevant, if themes needed to be combined under one theme, or if a larger theme needed to be divided into separate themes (Braun & Clarke, 2006). Within the process of reviewing themes, I reviewed the data to ensure that each data piece within the theme was relevant to the assigned theme, or if it needed to be reconsidered (Braun & Clarke, 2006). Once all data appeared to fit into the assigned themes, I moved onto the second stage. The second stage of reviewing themes included reviewing the entire data set in relation to the themes and ensuring that the themes made sense in the context of the data as a whole (Braun & Clarke, 2006). Of note, using an Interpretive Description approach to analysis, it was not required to represent the entirety of the data set in my findings. Interpretive Description allows for the researcher to consider the “infinite possibilities” of groupings or relationships within the dataset and select which data will present the “most meaningful set of findings” (Thorne, 2016, p. 164). 3.3.4.6 Defining and Naming Themes. Once I was comfortable with the reviewed themes, I moved on to define the themes. At this point, I articulated what each theme represented in the context of my research (Braun & Clarke, 2006, 2013). Within each theme I arranged the data to create a coherent story (Braun & Clarke, 2006). Next, I wrote about each theme and was careful to not simply paraphrase nurses’ statements, but engaged in an interpretive account of the data to describe what is interesting about the data and why (Braun & Clarke, 2013). When giving names to my themes, I followed the advice of Braun and Clarke (2006) to ensure clarity of the theme names. 64 3.3.4.7 Writing the Report. The final phase involved writing the analysis section. As I wrote the analysis, I aimed to give a coherent and logical summary of the themes including data to support the themes (Braun & Clarke, 2006). I aimed to move beyond description and provide an analytic narrative of the data (Braun & Clarke, 2006). Within the writing section, Thorne (2016) warns of common problems within writing that I aimed to avoid including misusing metaphors, excessive or insufficient description or analysis, and conceptual confusion. To combat these common concerns, I avoided the use of metaphor within my research, ensured that I provided adequate description of how data excerpts related to the described themes as well as how the themes relate and answer the research question. Finally, I aimed to ensure that the concepts I wrote about were clear, particularly when relating concepts within this study to research that has already been completed (Thorne, 2016). 3.3.5 Knowledge Translation Knowledge translation is defined by the CIHR as “a dynamic and iterative process that includes synthesis, dissemination, exchange and ethically-sound application of knowledge to improve health, provide more effective health services and products and strengthen the health care system” (CIHR, 2016). It is noted throughout health research literature that the translation of research findings into practice is limited, and results in the theory-practice gap (Doane & Varcoe, 2008; Grimshaw et al., 2012). Due to the difficulty researchers have translating research into practice, the benefits that may be passed on to patients is limited (Grimshaw et al., 2012). I aimed to avoid this common research pitfall for my own research. To do this, I used a framework developed by Lavis et al. (2003) and considered five questions as they related to my research project. 65 In order to engage in knowledge translation within this research, the first step is to synthesize research findings (Harrison & Graham, 2021) and consider the first question posed by Lavis et al. (2003), “what [knowledge] should be transferred?” (p. 222). As evidenced by the literature review, limited research exists regarding nurse’s communication surrounding MAiD. As such, I aimed to synthesize the research findings from this study with the current literature that exists to produce knowledge that is beneficial to share. The next questions highlighted by Lavis et al. (2003) relates to dissemination. They suggest considering who should the knowledge be transferred to, who should transfer the knowledge, and how (Lavis et al., 2003). It is my hope that findings generated from this research will be disseminated through a variety of channels. I plan to, with the support of my supervisor and committee, transfer the practical findings of the research to the healthcare community, specifically nurses, with the aim of providing information that nurses can bring into their own practice. I hope to do this through a variety of avenues. It is my plan to publish a journal article stemming from this research in a peer-reviewed journal. As well, I hope to present this information through conferences, either a palliative care conference or MAiD conference. Informally, as I am a current practicing nurse within a context where nurses are talking to patients about MAiD, I hope to be able to share my findings with my nursing colleagues. The final question asked by Lavis et al. (2003) is, “with what effect?” (p. 227). It is my hope that the findings produced through this research will provide a basic understanding of nursing communicative practices in regards to MAiD. Of course, as this is only one study, caution has been taken to avoid generalizing findings across all settings (Grimshaw et al., 2012). This is highlighted in the limitations section in Chapter 5. However, while limitations exist, I do believe translating this knowledge is important as there are so few research studies conducted 66 that address nurses’ communications in regards to MAiD. It is my hope that throughout the process of knowledge translation shared above, mutual learning may occur between myself and knowledge users in a way that will provide opportunities for growth and learning (Harrison & Graham, 2021). 3.4 Quality Thorne (2016) discusses various ways in which to enhance credibility in Interpretive Description. While Interpretive Description as a whole aims to gain understanding about human experience, the results are not “inevitably accurate, relevant, or even necessarily socially responsible” (Thorne, 2016, p. 231). Thorne (2016) makes the argument that within health research, insights derived from a research study may be used immediately in practice and therefore researchers have a responsibility to ensure that the quality of research and meaning made from the research findings is appropriately considered. Thorne (2016) argues that there is not a specific checklist that researchers can follow to ensure credibility, but a logic to align “purpose, process and context” is necessary (p. 239). Thorne (2016) highlights epistemological integrity, representative credibility, analytic logic, and interpretive authority as important considerations for researchers to ensure credibility within their project. Additionally, Thorne (2016) expands on moral defensibility, disciplinary relevance, pragmatic obligation, contextual awareness, and probable truth as five further more subtle quality measures. 3.4.1 Epistemological Integrity To achieve epistemological integrity, the research question must align with the method of data collection, and the interpretation strategies used within the study must follow logically from the research question (Thorne, 2016). In this way, the reasoning used to make decisions must align with the assumptions made about the nature of knowledge (Thorne, 2016). Thorne (2016) 67 cautions readers about research where the knowledge generated from a research project is incompatible with the assumptions explicit in the research design (see also Braun & Clarke, 2013). I have highlighted earlier in this chapter that Interpretive Description sits between an objective and subjective reality. I was therefore careful not to make claims within this project that there is one specific way to communicate about MAiD as this would contradict the epistemological framework of the study. Instead, I acknowledge that findings from this study may be helpful for nurses in a variety of situations, however due to the diversity of human experience nurses will also need to engage with other ways of knowing to implement the findings in ways that match their needs. 3.4.2 Representative Credibility Representative credibility refers to assessing the quality of findings and the resulting claims based on if they are consistent with what was studied (Thorne, 2016). For example, Thorne (2016) states that if research was conducted studying one specific cultural group, generalizations made about multiple cultures may not represent quality research findings. Conversely, studying a diverse group, or for an increased length of time may increase a study’s credibility (Thorne, 2016). In the original study, representative credibility was considered in multiple ways, through interviewing nurses who are both comfortable and uncomfortable with MAiD to gain a varied perspective of communicative practices, interviewing nurses from multiple provinces across the country, as well as interviewing nurses who have taken varied roles within a MAiD procedure. Within the secondary analysis, I aimed to maintain representative credibility by selecting a wide range of interviews to ensure a diverse sample was analyzed for communicative practices. As well, while a range of perspectives were collected through the 68 original study, I acknowledge that the findings from this study are not representative of all nurses in Canada, and have avoided making generalizations about the study findings. 3.4.3 Analytic Logic Analytic logic requires that researchers explicitly state reasoning for the structure and decisions made within the research project (Thorne, 2016). Evidence of analytic logic includes explanations of how interpretations and knowledge claims were made, and how it impacted the outcome of the research (Thorne, 2016). Tracking methods as the researcher moves through the process is necessary and should be explained in depth within the research findings rather than simply stating that certain processes occurred (Thorne et al., 2004). When the researcher explicitly states decisions made throughout the research process, the reader is able to independently assess the credibility of the research (Thorne, 2013, 2016). In considering this, I kept an analytic journal throughout the process. Using an analytic journal and being explicit about the decisions made throughout the analysis process also met the criteria for a good thematic analysis as set by Braun and Clarke that the researcher is active within the analytical process (Braun & Clarke, 2013). 3.4.4 Interpretive Authority Interpretive authority provides assurance to the reader that the researcher’s interpretations are trustworthy. In order to achieve this, researchers should account for their own truths, biases, and experiences that could impact how they interpret data and make decisions throughout the research process (Thorne, 2016). For this study, I explicitly stated my positionality in terms of EOL care and MAiD as well as my own experiences that could impact how I interpret what nurses say in their interviews in section 3.6. I also had ongoing discussions with my supervisor and thesis committee who supported my development as a researcher and challenged my 69 thinking, beliefs, and potential biases that I came to this research with. Additionally, to increase interpretive authority, I included quotes from nurse participants to illustrate interpretations made throughout data analysis (Braun & Clarke, 2006; Thorne, 2016). For each quote I included within the study, I reviewed the quote in the context of the original interview to ensure the context within the interview matches my interpretation made within the study (Braun & Clarke, 2006). 3.4.5 Moral Defensibility Moral defensibility requires researchers to consider the moral argument for undertaking their research (Thorne, 2016). Researchers must consider why extracting information from research participants and potentially putting them at risk will be beneficial overall based on the potential knowledge to be generated (Thorne, 2016). Given that MAiD is relatively new in Canada, little research that has been completed on the topic, and that it is well documented within the literature that nurses find communication about MAiD to be challenging and complex (Bellens et al., 2020; Pesut et al., 2019), I believe research into this area is morally justified. Certain safeguards were put in place during the interview process of the original study to reduce the level of moral distress felt by nurses in the interview including a thorough explanation about the purpose of the interview so that nurses were not unexpectedly talking about something they were uncomfortable talking about, the ability to end the interview at any time, as well as the interviews were conducted by skilled interviewers with a nursing background and were able to listen empathetically to the nurses sharing their experiences. 3.4.6 Disciplinary Relevance Thorne (2016) argues that proving disciplinary relevance and highlighting how the discipline will benefit is important for credibility. Qualitative health research has been defined 70 “as a research approach to exploring health and illness as they are perceived by the people themselves, rather than from the researcher’s perspective” (Morse, 2012, p. 21). By using semi-structured interviews to gain insights from nurses within the profession, as well as by having the researchers coming from the nursing profession, the findings from the project are likely to further the discipline due to their “insider” status (Morse, 2012). Additionally, as described above, this research is relevant to the nursing discipline in order to provide further insight for nurses to communicate about MAiD. 3.4.7 Pragmatic Obligation Thorne (2016) highlights pragmatic obligation and cautions researchers to present their findings acknowledging that they may be applied in practice. With the goal of Interpretive Description being to produce useable practical knowledge (Clark et al., 2011; Thorne, 2016), researchers have an obligation to consider how their findings will be implemented in order to reduce any potential harm (Thorne, 2016). In this research study, I aimed to produce findings that are beneficial for nurses engaging with patients considering and/or receiving MAiD. I also aimed to ensure readers of the final research product are aware that the findings are based on one study and highlighted associated limitations in section 5.6. 3.4.8 Contextual Awareness Contextual awareness requires that researchers are clear about the context in which their research takes place and acknowledge that interpretations made within the research may or may not be constrained to a particular time and place (Thorne, 2016). I ensured that the context in which the research was completed, specifically that interviews included within the secondary analysis were conducted shortly after MAiD became legal in Canada, is clearly detailed within this paper. For example, when relevant, within the findings chapter, I included the context of 71 nurses’ experience along with participant quotes to provide the reader with more context to the selected quote. 3.4.9 Probable Truth Finally, Thorne (2016) argues that while there may be no absolute truth, it can be beneficial to accept a “probable truth” (p. 238) until compelling reasons arise to abandon such knowledge. By thinking about probable truths rather than absolute truths, research can aim to make meaning in the world we live in, rather than aim to uncover absolute truths (Thorne, 2016). While it is helpful to consider concepts discovered through research as probable truths, it is also important to understand that while the findings from this study may be true and helpful for some nurses, they may not be applicable for all nurses having conversations about MAiD. 3.5 Research Ethics Review and Approval Throughout this study, I ensured that research ethics were maintained as described by the Tri-Council Policy Statement (TCPS2) (CIHR et al., 2018). Respect for human dignity underpins the core ethical principles outlined by TCPS2 including respect for persons, concern for welfare, and justice. The original MAiD research project was approved through the Behavioural Research Ethics Board at the University of British Columbia and therefore maintained ethical principles. For this thesis, I gained ethical approval from the Behavioural Research Ethics Board to complete a secondary analysis of the data to ensure the project adheres to rigorous ethical standards. Key considerations in research ethics as described by TCPS2 were considered throughout this project. In this section I will focus on areas most relevant to this project including participant consent, fairness and equity, privacy and confidentiality, and the nature of qualitative research (CIHR et al., 2018). Consent was achieved through researchers providing nurses with a consent 72 form prior to completing the semi-structured interview. The participating nurses were made aware that their participation in the study was voluntary and they were free to stop the interview at any time and/or withdraw from the study at any time. Participants also agreed to secondary analysis of the data on their written consent. Fairness and equity were maintained throughout the study as participation in the interview was based on fair and equitable inclusion/exclusion criteria and was not based on attributes such as culture, language, gender, race, ethnicity, age, or disability. Privacy and confidentiality were maintained throughout the original study and was continued to be maintained in the secondary analysis through de-identification of transcripts, maintaining password-protected access to data, and ensuring that any findings published will not unintendedly identify a specific research participant. While MAiD is legal in Canada, many nurses make complex moral decisions when it comes to choosing whether or not to participate in MAiD (Pesut et al., 2020c). For this reason, maintaining confidentiality remains important. Finally, the nature of qualitative research is to understand how people think, act, and behave in the world (CIHR et al., 2018). The TCPS2 acknowledges that due to the nature of qualitative research, findings are based on the researcher’s interpretation of the data collected and may be dependent on the social context in which the data were collected (CIHR et al., 2018). For this reason, it is ethically necessary for researchers to ensure their research is of high quality and follows a methodological approach to maintains trustworthiness and rigour. 3.6 Reflexivity As researchers become intimately involved in their research, they must also be self-aware and acknowledge their own responses and relationship to the research topic and research participants (Berkovic et al., 2020; Dowling, 2006). This self-awareness is broadly termed reflexivity (Dowling, 2006). Braun and Clarke (2013) acknowledge two different types of 73 reflexivity – functional and personal. Functional reflexivity refers to the ways in which the research tools and process may impact the research and personal reflexivity refers to how who we are as people and researchers can impact the research project (Braun & Clarke, 2013). The methods highlighted in previous sections consider functional reflexivity and describe methods I followed to reduce bias within the research process. In this section, I will briefly discuss steps I took to maintain personal reflexivity. Buetow (2019) argues that using reflexivity allows researchers to be aware of their cognitive biases to avoid seeing only what is expected or what fits within their pre-existing beliefs. Thorne (2016) recommends researchers be aware of their intellectual positioning, including assumptions, values, and beliefs and present them to the reader as needed. Interpretive Description acknowledges that biases exist and are unremovable from the data researchers collect, but should be included within the data analysis (Braun & Clarke, 2013; Thorne, 2016). Some methods outlined in the literature to promote reflexivity include journaling (Dowling, 2006), bracketing (Berkovic et al., 2020), and introducing a "skeptical peer perspective" into the research process (Buetow, 2019, p. 11). For my thesis I wrote personal reflections, and used an analytic journal to highlight my thinking throughout the analysis as a way to address and highlight my own biases within the research. I came to this research aware that I bring my own history, values, assumptions, perspectives and politics to the interpretation of the research (Braun & Clarke, 2013). For example, while it should not impact my interpretation of data, I believe it is important to note that I support MAiD and have only practiced nursing within a landscape where MAiD is legal. This may have impacted the way that I interpreted interviews completed with those who are conscientious objectors or those who hold differing views from my own. It is my hope that 74 through writing field notes with my personal reflection, and keeping an analytic journal, I was aware of my own thought process to reduce any biases that may have come up. Thorne (2004) acknowledges that newer researchers will require external guidance both to challenge assumptions and challenge premature conclusions within the research. To address this need, my supervisor and thesis committee were able to challenge my thinking to further reduce bias and assumptions from influencing my research project. 3.7 Chapter Summary This methods chapter introduced Interpretive Description as a qualitative research method created for nursing researchers to address the need for a research methodology that produces relevant, practical findings. Interpretive Description meets the needs of applied health researchers to undertake a rigorous qualitative research study while not adhering to strict methodological requirements of more common qualitative methodologies. This chapter also provided an overview of the study design including data collection, data analysis, knowledge translation, ethics, and reflexivity. The following chapter will move into the research findings, followed by the discussion. 75 Chapter 4: Findings 4.1 Introduction This chapter presents the findings of this secondary analysis related to nurses’ communicative practices in relation to MAiD. Throughout the analysis process of the data, it was determined that the communicative practices of nurses vary throughout the stages of MAiD. For that reason, the data will be presented in five different sections based on the patient journey through the MAiD process including: contemplation, assessment, waiting period, provision, and family bereavement. Within each of these sections, themes will be presented describing nurses’ communicative practices. The table included following this introduction provides an overview of the themes that will be described throughout this chapter. Table 1: Summary of Themes 4.2 Contemplation 4.2.1 Patient Initiated Conversations 4.2.2 Nurse Initiated Conversations 4.2.3 Initial Conversations with the MAiD Team 4.2.4 Communicating with Families 4.2.5 Conversations when MAiD is Not Legal 4.2.6 Challenging Conversations Related to Ineligibility 4.3 The Assessment 4.3.1 Adjusting Time Based on Patient Needs 4.3.2 Facilitating an Open Conversation 4.3.3 Setting the Scene for the Provision 4.3.4. Communicating about Ineligibility 4.4 The Waiting Period 4.4.1 Listening to Patient Stories 4.4.2 Checking in With Patients 76 4.4.3 Setting the Scene 4.4.4 Navigating Challenging Situations through Conversation 4.5 The Provision 4.5.1 “Saying Goodbye” 4.5.2 Building Relationships on the Day of Provision 4.5.3 Creating a Comfortable Environment: “be compassionate, empathetic, and connect with the human” 4.5.4 Providing Reassurance and Validation 4.5.5 Ensuring Final Consent and Patient Readiness: “let’s get this show on the road” 4.5.6 Pronouncing Death 4.6 Bereavement 4.6.1 Expressions of Gratitude 4.6.2 Communication about What Comes Next 4.6.3 Bereavement Care 4.7 Recommendations 4.7.1 Support and Education for Nurses 4.7.2 Including Conversations about Care Options Early 4.7.3 Implementing a Way to Receive Feedback 4.1.1 Description of the Sample In this secondary analysis, 42 of the total 59 interviews were selected to be included within the project. I selected these 42 interviews as they all included various aspects of communicative practices surrounding the MAiD process. The remaining 20 interviews that were not selected did not include information about nurses communication and therefore, not selected for this secondary analysis. Of these 42 nurses, 13 were NPs and 29 were RNs. Two of the 77 interviews selected were from nurses who identified as conscientious objectors to MAiD. All participants had experiences with patients considering or choosing MAiD, with some nurses voicing they had cared for over 50 patients who at one point were at least considering MAiD. 4.2 Contemplation This section will present information gathered from the interviews about nurses’ communicative practices when patients are contemplating the idea of MAID prior to making the commitment for an assessment for MAiD. This section will cover communicative practices of nurses when patients initiate the conversation about MAiD, when nurses initiate the conversation of MAiD, and when nurses on the MAiD team are making their first contact with a patient, prior to an assessment. This section will also cover how nurses communicate with families during the contemplation phase, a brief description about communication when MAiD is not legal, and finally, when nurses are discussing ineligibility. 4.2.1 Patient Initiated Conversations Throughout the interviews nurses described how they responded to patients after receiving a possible request for a hastened death. Nurses described three different ways that patients initiated conversations about MAiD. These include patients voicing vague wishes of wanting to die, specific requests for MAID, and lastly direct requests for information about MAiD without patients explicitly expressing a desire for it. Throughout each of these ways that a patient may initiate a conversation about MAiD, similar practices for responding to patients were found within nurses’ statements within the interviews. This section will first describe examples of the various ways that patients initiate these conversations, followed by the overall pattern with which nurses respond to these comments including acknowledging the patient without 78 judgement, clarifying the patient’s request, exploring meaning, and providing information about the possible next steps. 4.2.1.1 How Patients Initiate. As described above, patients can initiate these conversations in a variety of ways, either vaguely, or directly. Many nurses within the interviews explained that vague wishes for assistance in dying are not new, having heard requests such as “Can you make my life a little shorter? Is there anything I'm doing in these… are there any of these pills that are making my life longer?” or “Can you shorten my life, dear?” (P05 – RN) for many years prior to the legalization of MAiD. In the context of MAiD being legal, nurses shared examples of how nurses hear patients bring up death more “flippantly” (P28 – RN) as well as patients voicing a lack of purpose or express wish for death without mentioning MAiD as described by the following quotes: “I'd like to pull the plug now.” (P05 – RN) “We can't go on like this. We don't want to do this. We can't go on like this.” (P56 – RN) “I would just like, you know, for someone to give me something and… but I know that's illegal.” (P29 – RN) “I wish there was magic pill. Could you give me enough medication? Could you please kill me?”(P07 – RN) “I wish I could just end this all now.” (P28 – RN) “I've had enough. I don't have any purpose anymore. I just wish I could fall asleep and not wake up.” (P29 – RN) “I don’t see that I have any purpose in this world anymore. I don’t see why I need to still be here.” (P29 – RN) 79 In addition to receiving vague requests for death, some nurses also voiced receiving specific requests for MAiD, for example, “I’m interested in MAiD. I’d like to talk about it more... I want more information” (P28 – RN). Another nurse who was just starting their shift received information from a night shift nurse that a patient had expressed desire to access MAiD and asked them to follow up with the patient (P22 – RN). Finally, some nurses also described that some patients brought up the topic of MAiD, not necessarily expressing their desire for it, but more so to ask for more information about it, or wanting information about all the options available to them. The nurses who spoke about these types of conversations did not provide examples of what patients might specifically say in these circumstances. One nurse did describe that this type of conversation might begin with a patient who has just received a new palliative diagnosis. The nurse stated, “they’re just gathering information. So, those… those conversations can be not just about assisted dying and describing what palliative care is, where they can get palliative care. So, we don’t just stop at telling them what this one care option is. We… we hope to give them information about everything” (P03 – RN). 4.2.1.2 Acknowledging Patients without Judgement. Before diving into the specifics of how nurses responded to initial requests for assistance in dying, some nurses described more generally how they responded to inquiries about MAiD. Nurses voiced purposefully responding to these requests in a judgement-free way (P46 – NP; P05 – RN), and allowing these discussions to happen “in a safe... not in a pushy perspective” (P46 – NP). One nurse shared that there was a workplace recommendation on how to respond when someone requests MAiD which stated to be respectful of the question and respond in a way that “doesn’t demonstrate judgement or shutting down other questions” (P05 – RN). For example, avoiding judgmental responses such as “we 80 don’t do that here” (P05 – RN). One nurse described these conversations as often emotional “because that person is maybe coming to grips with the reality that their life may be over sooner than expected” (P03 – RN). Another nurse described the importance of active listening when responding to patients’ requests, stating “it’s a lot of active listening and just being there to make sure that… that the patient knows that we are a resource that they can reach out to” (P03 – RN). Where a nurse did not feel comfortable talking about MAiD with a patient, they responded to a patients’ inquiry without judgement by listening and acknowledging what the patient was saying (P29 – RN). For example: “I just met somebody for the first time this afternoon, a 97-year-old woman, who said, you know, "I don't see that I have any purpose in this world anymore. I don't see why I need to still be here." Now, she didn't go on to ask about anything further and I wouldn't offer anything further than that. She was… I was just listening to her and acknowledging what she was saying” (P29 – RN). After taking the time to respond in a non-judgmental way and acknowledge what the patient has just said, nurses move on to responding specifically to the patient’s request, whether it was vague or direct. In order to do this, nurses must clarify the meaning behind what the patient has just shared with them. 4.2.1.3 Clarifying Meaning. Regardless of how a patient brings up the topic of MAiD, nurses described taking time to ensure they clarify what the patient is referring to as well as the potential meaning behind the statement. One nurse shared that “reading the patient” allows them to know whether to dive into a discussion about MAiD or not (P46 – NP). For example, when a patient states “I just can’t do this anymore”, the nurse stated they “just try to open the discussion. And you can read quite quickly whether someone wants to go down that discussion or not” (P46 81 – NP). Clarifying what the patient means as they initiate the conversation of MAiD is important, particularly for patients who have made a vague request. One nurse explained that this is important particularly because some elderly people “don’t understand that [MAiD] is legal yet” (P57 – RN). Many nurses within this study responded to patient comments using direct language to ensure the meaning of the patient’s comment was understood. Examples of how nurses reported doing this, particularly for vague requests include: “Is this what you're talking about? Are you actually talking about medical aid in dying?” (P05 – RN) “Are you talking about, you know, symptoms or are you talking about MAiD? That's called Medical Aid in Dying. You know, are you actually asking for that?” (P05 – RN) “Do you mean [a pill] to sleep or are you thinking more of the line of Medical Assistance in Dying?” (P32 – RN) “Do you mean you don't want to, like, go on living anymore” (P57 – RN) For patients who were more direct in their request for information, nurses were also direct in their response. One nurse provided the example: “I heard you spoke about MAiD. What kind of information would you like?” (P22 – RN). Once a nurse clarified that the patient was indeed asking for information about MAiD, nurses discussed taking time to explore the meaning behind the patient’s request or statement. For example, nurses attempt to clarify between an ask for assisted death, or frustration with unmanaged symptoms. Examples of how nurses try to do this include: Vague Requests “What makes you say that?... Why are you making that statement? How can I help?... or What does that statement mean to you?” (P28 – RN) 82 “Tell me more about what you're feeling... what is it that you wish was over? Is it the pain? Is it the nausea?... are you wishing that your life was over?” (P34 – RN) “Sometimes when people express these kinds of things, it's because they're feeling… like, sometimes people just want validation that they're saying that it is, some people are actually thinking about hurting themselves or wanting to make a plan to do so, whereas other people are actually talking about assisted death.” (P56 – RN) “I try to identify their fears or typically their fear of being a burden on loved ones, fear of suffering, physically, at the end of life, fear of… you know, concern about relationships and all of that. We already address that with patients as part of our comprehensive assessment of their… of their symptoms, both physical and existential” (P50 – NP) One nurse described they responded sensitively to a patient inquiry by slowly broaching the topic of MAiD rather than going there directly. They stated that when they receive a request they will ask probing questions to determine the patients intention sensitively. For example, the nurse stated: “do it sensitively. Like, you can’t… like, I’ll… I’ll ask further and further and then, slowly reach the topic of MAiD, if that’s what they’re referring to, or if it’s sleep or something else, a distressing symptom, we’ll get into that further” (P32 – RN). Another nurse provided a thorough example of how they responded to a vague request for a hastened death by explaining the wide range of reasons why a patient voiced their wish. This nurse reveals the range of options they might discuss with patients from symptom management, patient fears, all the way to medical assistance in dying: “You know, you might be saying this and you might be saying that and the answer might be within this range and I'm just going to set out the range for you. The range might be 83 that you need some adjustment so that you're not suffering, it may be that you need something for sleep or to help you digest better and then, you know, perhaps you want to consider with the doctor, it's not a decision I can make with you but it's something that you can ask about, a level of sedation that would be appropriate. Maybe you need to know about your timeline and sedation can be mild, it can be just during the nighttime or it could be throughout the day." She had not slept all night and that was the trigger. And, you know, sedation, you know, if you were truly suffering and if you're talking about fear… actually talking about, you know, worries about suffering in the future, you can always have a conversation too about further sedation so that you're not even awake. You might not be ready for that at that point but that's a physician's decision to make. And you may be asking me about medical aid in dying, do you know about that? So, basically there's a range all the way from one symptom to several symptoms, to worries, to I can't be conscious anymore, to medical aid in dying.” (P05 – RN). Direct Requests “"What is it you're talking about? What's under… what's behind the question? Are you in pain right now? Is there something bothering you?" Anything physical, existential, spiritual or emotional gets explored.” (P05 – RN) “Well, we ask the patient to like… what… what is suffering to you? And so, obviously in nursing school we learn pain is what the patient says it is. So, suffering is what the patient says it is... And it’s like… okay, we… we get them to define what suffering is for them, obviously symptom… symptom issues are one, but of course, the… like, existential or that for sure, for sure, people don’t… do not want to lose their independence or their sense of dignity. And that is… and then there’s the anticipatory suffering piece.” (P55 – RN) 84 In the above examples, RNs explained how they explored the meaning behind both vague and direct patient requests by asking questions to learn more about what the patient is saying. For example, “tell me more about what you are feeling”, “what does that statement mean to you”, “can you tell me about your quality of life?” or “what is suffering to you?”. In these examples, nurses attempt to understand what is going on within a patient, what existential suffering they are experiencing alongside physical symptoms that may be leading them towards making statements about a desire for MAiD. 4.2.1.4 Providing Resources and Next Steps. After taking time to listen to patients and clarify the meaning behind their request, nurses spoke about directing patients to other appropriate care providers, providing resources, and explaining next steps. While providing this information is important, one nurse shared that within their response to any comments about MAiD, they are careful to avoid coercing or recommending MAiD to patients. The nurse stated, “I'm very careful about never leading, right, or, like you said, coercing or encouraging, it's just this is an option if you want it” (P49 – NP). For nurses who were unclear about their role in conversations about MAiD or nurses who were uncomfortable discussing MAiD with patients, referring patients to their physician, or the MAiD team were common next steps. When MAiD first became legal, nurses were unsure of what they were allowed to talk about with patients. One nurse expressed this difficulty stating, “at first, it was very difficult because we were unsure of our line with where our program ended and where we were allowed to talk about or what would we do with those MAiD referrals” (P43 – RN). Another nurse voiced that because in their jurisdiction they were unable to present MAiD as an option to patients, they felt they could not bring up MAiD unless the patient explicitly brought it up first, making responding to vague requests a little more difficult. However, these 85 nurses did state it is within their role to report these comments to the physician for discussion with the patient (P07 – RN). While one nurse described their ability to discuss MAiD was changing, they voiced when the topic was first brought up to them by a patient, they responded, “I hear you. I can't really talk to you about that... I suggest you bring it up with your doctor” (P39 – RN). The same nurse shared they now feel comfortable to say "Well, you know, there… that is a possibility you could talk to your doctor about" (P39 – RN). Similarly, one nurse who didn’t feel comfortable bringing up MAiD with the patient after these vague statements, stated they would ask the patient if they have shared this sentiment with anybody else (P29 – RN). For one nurse, it wasn’t a lack of comfort to discuss the topic of MAiD that led them to refer to a physician or the MAiD team, it was a lack of time to have a longer conversation with the patient. For example, this nurse described they responded to a patients’ vague request by stating, “Do you not want to, like, live anymore?" And if they say yes, I would say, like, "Well, there… we do have a team for Medical Assistance in Death." And they'd be, like, "Oh, I didn't know that." And, like, "Here's the number. Do you want me to contact them or do you want to contact them?" ... And then, we'd go from there.” (P57 – RN). In addition to recommending that patients talk to a physician or the MAiD team about MAiD, nurses also reported providing resources to patients for information sharing purposes. One nurse shared they respond to patients by explaining that they aren’t able to have a full discussion about MAiD, but they provide the patient with information from the MAiD team so that the patient can ask the appropriate professionals (P10 – RN). For example, “So, I've actually had quite a bit of exposure to MAiD in the sense that clients are always asking about it as an option. They don't always pursue it but they do ask about it and we, of course, can't counsel on it but I am able to provide them with the brochure and give 86 them the phone number of the team that can do the assessment and talk with them further about it. And so, I do that when they ask about it” (P10 – RN). Other nurses also reported they provide written documents to patients when they ask specifically for MAiD by printing off information from a government MAiD website or directing patients directly to those resources (P32 – RN; P11 – RN; P43 – RN). One example of what nurses might do in this situation is state: “I have a pamphlet that I can give you that will offer you more information on this and you can… you know, I can get that for you or, you know, your doctor will be coming in later on and if you'd like, you can certainly discuss it with the doctor and then we can… they can talk to you about all the… the way this works” (P34 – RN). When patients bring up the topic of MAiD, one nurse described that they take this time to explain the specific processes of how to request MAiD, including what forms and assessments are required and what can happen once those items are completed (P05 – RN). For example, that nurse stated: “first of all, you do the paperwork. Your family helps you with that. You'll need witnesses. If you don't get witnesses from your family members who aren't beneficiaries, then the MAiD office will find them for you through Dying With Dignity. And the… and then, you know… then, there's assessment number one and then there's assessment number two, a provision can be this or that… I don't think I've ever been that explicit with another person but this lady was so conscious, so open to the several ideas and just needing information and what happened for her was that she went from a position of feeling stuck and without agency to actually having a choice again” (P05 – RN). 87 Overall, whether patients voiced vague comments relating to death, direct requests for a desire for MAiD, or in interest in learning more about their options with MAiD, nurses used similar communication strategies. Using direct language to clarify patient meaning, asking probing questions to determine underlying patient concerns, and encouraging further discussion with either the nurse themselves if they are able, a physician, or the MAiD team in situations where the nurse isn’t able to provide more information are all ways in which nurses described engaging with patients who have inquired about a hastened death in some form. The next section will discuss the communicative practices of nurses who initiate the conversation about MAiD. 4.2.2 Nurse Initiated Conversations Throughout the interviews nurses also discussed their comfort and ability to bring up the topic of MAiD in the context of patient conversations nearing EOL without the patient or family having done so first. One nurse shared that their perception is that other nurses would not bring up the topic of MAiD “unless the window opened” by a patient or family request (P05 – RN), while other nurses voiced that it is important to them that patients know all of their options (P12 – RN; P32 – RN; P4 – RN). Nurses described the importance of patients knowing their options for various reasons including for informational purposes, to provide some level of relief for patients knowing it’s an option, and to support patient autonomy and the right to choose. “For me, I feel like it’s… it’s a good thing for patients to know about, just to know all of their options. So, it’s still a little awkward in conversation to mention, you know, that they do know of that option without, you know, not suggesting it at all or anything like that, but just to suggest that there are all of these different options and make sure that they know and are aware” (P12 – RN) 88 “just letting [patients] know that it’s an option, can offer a level of just relief, just knowing that that option is available to them” (P46 – NP) “I became very passionate about making sure that patients knew it was their choice to choose and that they, you know, it was their legal right and they have that choice and really the nursing staff or their family physician can’t… or legally can’t, you know, talk them out of it or… or refuse to give them information because they don’t believe in it themselves. I guess I’ve kind of become a patient advocate after that” (P41 – RN) One nurse, who identified themselves as a conscientious objector to MAiD also discussed the importance of patients being aware of their options. The nurse stated, “as their nurse, I have the responsibility to discuss all treatment options. It doesn’t mean I have to agree with them all” (P32 – RN). All of these quotes provide context to why nurses feel drawn to bring up the conversation of MAiD to a patient facing a life-limiting illness, even if a patient hasn’t brought it up themselves. In situations where nurses did want to bring it up to patients, they voiced caution about bringing it up as an option without suggesting that a patient choose MAiD. One nurse described that they, as well as other nurses they work with, feel uneasy providing any information about MAiD due to the risk of getting in trouble for being perceived as “counselling” a patient towards MAiD (P55 – RN). The nurse stated, “I was very uneasy and I… you know, because again, there’s this… there was this idea that you know, we could get in trouble and it could be perceived as counselling because our… our college of registered nurses and whatnot and the law says that we cannot counsel. So, you know, I think even to this day, I know there are nurses who are thinking… like, is it counselling” (P55 – RN). 89 Another nurse shared that it was initially unclear whether they could bring it up when MAiD first became legal, however as time has gone on, “things are turning around and that is becoming more of an open discussion that, you know, they're just putting it on the table as one of the options” (P16 – RN). Other nurses in the interviews explained how they bring up MAiD as an option without the risk of counseling patients to choose MAiD. One nurse stated they do this by ensuring patients are aware of all options available to them: “do you know all the options and there’s medications and have you talked about this and do you know about that. And… and some people have never even… they didn’t hear the doctor mention that option and they’re unsure how to go about finding it or who do they talk to. So, sometimes it’s just making that connection that they can talk to their GP further” (P12 – RN). The next quote exemplifies how an NP explains their role upon meeting a patient to include MAiD as one of their roles. In this way, the nurse did not suggest it as an option for the patient, but ensured the patient was aware that MAiD was an option in Canada: “I'll also mention what my roles are right away. So, when they say, "Okay. Who are you? What do you do?" Right? I say, "I'm a nurse practitioner. These are the things that I do in the region." And I'll list off working as a MAiD, you know, assessor/coordinator as part of it and then, you know, a lot of times they'll say, "Oh, what's that?" And then, you know, I can kind of say what it is, so it's not that it's mentioned as an option, it's just mentioned as that's part of my job, that's what I also do. Right?... And I find that's been a little bit of a crafty way to get around it” (P49 – NP). 90 Overall, while the communicative practices of nurses bringing up conversations about MAiD with patients were not discussed thoroughly within the interviews, nurses did voice in multiple ways the importance of patients being aware of their options, and the strategies nurses use to approach these conversations in a legal way. 4.2.3 Initial Conversations with the MAiD Team Once a patient has expressed a desire for MAiD, they will often be connected with the MAiD team. While the way MAiD teams function in Canada varies between jurisdictions, this section will focus on how nurses who are part of MAiD teams initiate communication with patients who have indicated a desire for MAiD, prior to the assessment phase. Nurses working on a MAiD team discussed the research they do prior to connecting with a patient to ease communication, the way they engage with and provide information to patients in an initial phone call, as well as strategies nurses use to ensure patient care needs are met. Firstly, when the MAiD team is working to make initial contact with a patient who has indicated a desire for MAiD, the team will often take some time to gather information about the patient to determine their current situation. For example, one nurse shared “I do try and get a little background information from ClinicalConnect, so that I'm not just making a cold call to them” (P30 – NP). Once they do make contact with the patient, they will determine whether the patient is able to be supported with information over the phone, or whether a home visit will be required (P30 – NP). One NP described their initial conversation as follows: “We just ask them about their medical history and about why they're thinking they might want help to die. We just go through the criteria with them just to make sure they think that they would meet that criteria. The… and then, we'll get permission to review medical records and say, like, "Hey, we're going to have to have a look at all of your medical 91 records. If it looks like you're likely to meet the criteria in the law, then we can arrange for the two independent assessments and the team arranges that” (P42 – NP). Similarly, another NP provided information about their first phone call with patients: “So, we gather a bit of information on the phone to discern, like… do they likely meet criteria and then if they do, then we will request medical records. Or even if it sounds like they don’t, but they’re pretty insistent, then we might collect medical records at that point” (P55 – RN). Next, as nurses connect with patients initially, they discussed using clear language to ensure patients are making their decisions for themselves, and at the right time. One NP shared that when they initiate contact with someone who has indicated an interest in MAiD, they will provide information about the process and what it entails, and then if the patient is not sure of wanting to proceed to next steps, they will leave the next steps in the patient’s hands. For example, when a nurse from the MAiD team did get in touch with a patient who was not yet ready to take the next steps, the nurse stated, “That's fine. Let me give you the background information and answer any of your questions and, you know, give you some process information there... When you guys are ready to have the conversation with me, then you give me a call” (P30 – NP). Finally, when meeting with a patient who is contemplating MAiD, the MAiD team will also be sure that patients are aware of all their resources and ensure their care needs are being met. For example, one nurse described they would say to a patient: “this is not an either/or thing... we're absolutely in favour of you feeling as well as you possibly can for however long you have and whether you die naturally or with help but, like, assisted dying is not a mode of care, it's just a matter of death at the end of life. You 92 should, like, take advantage of all of the other resources that are available to you and feel as well as you can” (P42 – NP). Similarly, another nurse voiced how even when someone is reaching out for MAiD, the MAiD team may still recommend that the patient become involved with palliative care to “make sure there are no unmet needs” (P55 – RN). In this way, patients who reach out to the MAiD team to express their interest in the program are not limited to one care option. In the same way that nurses want to ensure that patients are aware of the option of MAiD, MAiD teams are also working to ensure that patients are aware of alternative options to MAiD. 4.2.4 Communicating with Families This section will describe how nurses communicate with family members who are trying to come to grips with patients’ decisions. Similar to how nurses discussed MAiD with patients, nurses described discussing MAiD with family members in an open, non-judgmental way. One nurse explained how they navigate situations where family members disagree with the patient’s desire for MAiD by remaining neutral in the conversation and providing resources: “I feel like I've done a good job of validating both sides… you know, just trying to stay neutral and letting them know, like, what supports are available... And even, like, telling people or encouraging them, you know, to, like, call the team and have these discussions with them and tell them how you're feeling... Like, it doesn't mean you're going to do it, it means that you're going to get more information, so you have more knowledge and, you know, explore what the real fear is and if there's more to it that, you know, can be supported” (P56 – RN). 93 Overall, when supporting family members, it appears that nurses tried to stay neutral and ask questions to learn more about the family’s beliefs and feelings as a way to support families through this difficult time. 4.2.5 Conversations when MAiD is Not Legal Long before MAiD became legal in Canada, nurses have been responding to patient requests or inquiries about assisted death (P55 – RN). Most nurses in this study who discussed these situations reported feeling helpless (P03 – RN; P11 – RN). For example: “I felt helpless sometimes when I had parents saying to me, “it’s just not enough. He’s still suffering, what can I do?”” (P03 – RN). In some cases, these scenarios are what has influenced their acceptance of MAiD as a care option at EOL (P11 – RN; P29 – RN; P49 – NP). Examples of how these scenarios influenced nurses’ decisions include: “And I've just encountered too many people to count that pleaded with me at some point, "Why can there not be something to alleviate this suffering?" And, you know, having worked in palliative care for a long time... we can do an awful lot to help with symptoms but there's existential suffering that is not necessarily going to be helped in that way. And, you know, for some people suffering has a meaning that they want to endure it, right, and other people don't want to endure it. And I just can think of numerous people that every single time I saw them, you know, "Can you not do something for me?" You know, it felt very hopeless… And I always try to promote hope around palliative care... but there is a very, very small percentage that you're not going to achieve good symptom management. So, I… you know, like, even before this, I was a pretty big proponent of terminal sedation.” (P29 – RN). 94 “So, it was people who, you know... towards end stage or at end stage of their cancer... They'd have a lot of people coming in in, like, you know, really severe pain crisis or with really severe shortness of breath and a lot of suffering. And we had a lot of clients who would ask for that or just say kind of, you know, offhand, like, "Oh, I wish, like, euthanasia was, you know… was allowed. We treat our animals nicer than we treat the people." Right? Comments like that that kind of, I guess, planted the seed in my mind” (P49 – NP). When nurses talked about how they responded to these sorts of requests before MAiD was legal, nurses voiced responding by listening and acknowledging patient concerns. For example, some nurses indicated that after receiving these requests for death prior to MAID legalization, nurses would have conversations with patients to explore their suffering and reasoning for asking for assistance in dying (P05 – RN; P56 – RN). One nurse explained they gave patients the opportunity to talk about their concerns: “So, we didn't shut down the question. We allowed her to talk about that” (P05 – RN), while another nurse voiced diving deeper to try to explore the patient’s suffering and intentions for MAiD when the patient was asking for a pill to end their life: “"Well, that's a really grey question. If you feel like you don't have any quality of life, if there was something that we could do to make things better, would that change your mind?" And he explained how he did not want to be bedbound and whatnot and so I explained to him that MAiD wasn't currently legal but that he could pursue legal consultation to apply for it” (P56 – RN). Another nurse described responding to a request for assistance in dying through conversation, and “using the resources we had to make sure they didn’t suffer” (P52 – RN). In this context, the 95 nurse indicated that this involved symptom management through medication to try and make the patient as comfortable as possible. For example, the nurse stated, “if someone has pain medication ordered, then I’m going to go to them and assess… are you having pain, are you struggling to breathe… you know, just making sure they had available and were offered whatever it was to ensure their comfort” (P52 – RN). Although nurses were unable to act on requests from patients for assistance in dying prior to legalization of MAiD, the process of responding to these requests appears quite similar to the current context including listening to patients, exploring the rationale for their request, and utilizing the resources available to reduce the suffering experienced by the patient. 4.2.6 Challenging Conversations Related to Ineligibility Both RNs and NPs spoke about communication with patients and families related to patient ineligibility for MAiD. Due to a difference in their role, NPs and RNs spoke about this in different ways. NPs typically spoke about ineligibility at the time of assessment, whereas RNs, when they spoke about ineligibility, spoke about it primarily during the contemplation period. This section will describe how RNs communicate about ineligibility prior to a patient completing the formal assessment process for MAiD. While RNs are not involved in assessments, one nurse voiced that sometimes patients ask them whether the nurse thinks the they will be eligible or not for MAiD. This nurse stated they responded by clearly stating their role, “I’m not an assessor, I can’t tell you whether I think you’re eligible or not. That’s not under my jurisdiction” (P03 – RN). Another RN acknowledged that discussions about ineligibility are more straightforward when it is “cut and dried” that the patient is no longer eligible for MAiD. For example, in a situation where a nurse was asked by a family member, “why can’t my loved one have [MAiD]?” (P03 – RN), the nurse was able to 96 have a direct conversation with the family to explain the rationale for the patients ineligibility. For example, “even though this... may not seem fair to you, this is the way the law is set up” (P34 – RN). At that point, the nurse described they would then provide the family with a handout including contact information for the MAiD team to speak directly to a coordinator for further information regarding patient ineligibility (P34 – RN). One RN also explained how they used direct, supportive language to support a patient who was deemed ineligible for MAiD by one provider after being deemed eligible by another practitioner, leaving the patient quite distressed. The nurse described supporting the patient to continue forward with the process if it was still their wish and reminding the patient of their rights, stating, “you have the right to be assessed again. There's already been somebody who feels that you're eligible. You have every right to be assessed again” (P29 – RN). The statements shared by nurses are direct and ensure RNs do not give the patient or family any false hope or indication about eligibility as it is out of the RNs scope to determine eligibility. 4.2.7 Summary Overall, nurses engage in meaningful, challenging discussions with patients and family members as patients contemplate choosing MAiD. Regardless of how the conversation is approached, nurses use non-judgemental communicative practices to explore the meaning and suffering behind patient requests. Nurses navigate these conversations throughout Canada where different jurisdictions have different restrictions on what nurses can and cannot discuss leading to some discomfort from nurses about how to have these conversations with patients. 4.3 The Assessment This section will present the communicative practices of nurses throughout the assessment for MAiD. This section will focus on the NPs in this study as RNs are not able to 97 complete assessments for MAiD. One NP stated that the assessment conversation is “a very skilled interview because you are dealing with sort of the most critical situation of their life at times” and voiced the importance of nurses’ skills in the “ability to build rapport with people and create an environment to allow them to share what has brought them to this place” (P02 – NP). Another NP stated the assessment is similar to “a typical patient assessment but in a different perspective” although the nurse did not elaborate on what this different perspective entailed (P04 – NP). This section will present the general strategies nurses use throughout the MAiD assessment including adjusting time based on patient needs, creating open conversation, and using assessment tools. Next, a description of the specific topics of discussion that nurses brought up during the interviews will be presented. Finally, this section will conclude with the challenges nurses experience when having to communicate ineligibility for MAiD to a patient. 4.3.1 Adjusting Time Based on Patient Needs When completing an assessment for MAiD, the time the assessment takes varied from patient to patient. Nurses in the study described assessment conversations that lasted anywhere from 15 minutes to three hours depending upon a variety of patient and family factors such as a patient’s ability to communicate, desire for conversation, or a patient’s or family’s need for additional support. Two nurses shared their rationale for the length of time of the assessment. For shorter assessments nurses discussed factors where patients don’t have a lot of energy or are quite sick, and for longer assessments, nurses described patients as chatty, having more questions, or having more to say about their life story. Two quotes that exemplify this are: “these conversations can be as short as 15 or 20 minutes. Like, if someone’s really, really sick and they can’t answer a lot of questions, I try and make things really succinct and not drag it out… and I can glean a lot of information from the collateral… Up to, like, an 98 hour, if someone’s chatty and wants to talk… has questions and has more to tell me about their life story” (P25 – NP). “We would do the first assessment and they're usually kind of, like, an hour long. Sometimes it can be a bit longer, depending on how chatty the people are or shorter depending on how well they are and how much energy they have” (P42 – NP). Another nurse shared that prior to an assessment they will gain some collateral information about the patient to support their assessment. The nurse stated, “I may get a call from a care coordinator within the LHIN to give me the name and a little bit of background on a patient in the community wishing to avail themselves of MAiD and I call the family and I go and spend anywhere between probably, oh boy, an hour and a half to two and a half and sometimes three hours with the family and a patient” (P01 – NP). In the next quote, the nurse explained how the assessment was longer because the nurse spent time supporting the patient and their spouse who was struggling with the patients’ decision: “I probably spent two hours in that home for an assessment but, you know, that's not necessary from an eligibility point of view… But it's all those other pieces… the wife was really struggling with this decision of her husband. So, it was his decision to do this but she was… she'd had a lot of trauma in her life and she really… you know, he was kind of her rock. And so, I spent a long time talking to them both and sort of injecting in terms of her taking care of herself afterwards and these sorts of things. So, all of that to be said, that when I left that assessment I had the biggest sense of peace I think I've ever had in my career... It's the most meaningful work that I've done and I think it's also enhanced the palliative care that I do in my day-to-day settings” (P02 – NP). 99 As described in the quotes above, the assessment time can vary based on patient or family factors. Being flexible and attuned to patient and family needs at the time of an assessment is one way in which nurses provide patient-centred care. 4.3.2 Facilitating an Open Conversation Many nurses in the study discussed that they aim to open up a free-flowing conversation with the patient to provide them with most of the information they are required to know in order to complete their assessment rather than asking a series of specific directed questions. While some nurses did discuss the use of specific assessment tools which will be discussed in section 4.3.2.4, the majority of nurses described free flowing conversations which will be the primary focus of this section. Two NPs shared the term “legacy conversations” to describe the significance of these conversations in the context of the assessment phase of MAiD (P01 – NP; P02 – NP). The NPs described the legacy conversations as “powerful” (P01 – NP) and “profound” (P02 – NP) and included “talking about what has brought them there and also the wonderful experiences of their lives, you know, their family, their work, their… you know, the things that have made their lives meaningful” (P02 – NP). The other NP who used the term legacy conversations described the “nurturing and caring” that goes into these conversations with the aim of “getting folks to tell us their story” (P01 – NP). In order to create an open-ended conversation, one nurse shared how they attempt to decrease the stress a patient might feel during an assessment in the following quote: “we usually make it clear to the patients before, because it can be kind of intimidating having this crowd of people, like, come to your house… And, like, sit across from you and all these dining room chairs. So, we're pretty clear, like, this is not a test, you don't 100 have to convince us of anything. Like, we think that you're very likely to meet the criteria, otherwise we wouldn't be here, we just have to hear from you, like, what your experience in illness is and what you know about your treatment options. You don't have to have them but you need to know about them. And why you're thinking that you might want help to die, this doesn't commit you to anything... So, even though it… like, it might seem like your suffering is really obvious, we still have to ask the question because we can't put words in your mouth… because I think sometimes people feel a little bit, like, "Why are you asking me why I want help to die? Can't you tell? Like, aren't you looking at me? Aren't you paying attention?"” (P42 – NP). In the context of this study, nurses spoke about opening up the conversation very generally to begin an assessment which, in some cases, provided the nurses with enough information to complete the assessment. In other situations, where the cases might have been more complex, nurses spoke further about the complexity of assessing suffering. This section will first describe the general strategies to open up conversations by establishing rapport, letting patients guide the assessment, followed by strategies of assessing suffering and ending with a description of how some nurses use specific tools and templates for the assessment. 4.3.2.1 Establishing Rapport. To facilitate an open discussion, some nurses took time to describe the importance of establishing rapport with patients and their families. Multiple nurses in the interviews shared how many areas of nursing require nurses to establish rapport quickly to build relationships in various settings, with MAiD being no different. While nurses did not give specific examples of how they do this, the skill of establishing a relationship with patients and their families quickly is not new for nurses, and as one nurse stated, “we’ve had years and years of practice doing that, making somebody feel comfortable” (P08 – NP). For NPs, this may occur 101 during the assessment where nurses are required to “create an environment to allow them to share what has brought [patients] to this place” even if it’s the first time meeting the patient (P02 – NP). One NP voiced feeling “a step ahead” as an assessor for MAiD when they were already involved in the patients care prior to being an assessor and therefore the therapeutic relationship was already built (P49 – NP), implying that establishing a relationship is important in order to complete an assessment. 4.3.2.2 Letting Patients Guide the Assessment. For some nurses, simple open-ended questions provide entry to the assessment conversation. The following quotes exemplify the ways in which nurses approach the assessment and the specific questions they ask to open up the conversation and let patients tell their story: “I don’t personally have, like, a set template of how I do my assessments. I typically open, I think, pretty much every assessment with a question of… just please tell me why… why you made this request. And that really open-ended question usually gets me all of the answers I need from my assessment, typically because that sort of launches into someone telling me the course of their illness, you know, what’s been going on for them, how they feel about it all and you know. It typically just gives them the opportunity to speak about… about themselves and to what’s been happening and why… why they… how they got to this point” (P25 – NP). “I will often say that to a family, "You know why I'm here. I know that, you know, you are requesting medical assistance in dying." And then, we talk about the legislation and the process and then I kind of just open it up and say, "I'd really just like to hear your story."... "What… you know, what's brought you to this place where you're requesting MAiD?" or "Why now?"” (P01 – NP). 102 These quotes provide examples of how nurses let patients guide the assessment through open ended questions such as: “please tell me why you made this request,” “I’d really like to hear your story,” or “what’s brought you to this place where you’re requesting MAiD?” These nurses described that these open-ended questions usually gave the patients the opportunity to explain what is going on for them in the context of their illness as well as their life history that often provided the nurse with enough information for the assessment. In cases where these general questions did not provide enough information for the assessment, nurses utilized other strategies to dig deeper into the patient’s history, which is discussed in the next section. 4.3.2.3 Diving Deeper to Assess Suffering. In cases where the assessment was not straightforward, nurses provided examples of how they asked more specific questions to understand more about the suffering patients were experiencing. One nurse stated that after the patient has shared their story, “if I’m, you know, needing to ask more questions, I do” in order to meet the legal requirements of the assessment (P25 – NP). The next quotes exemplify how one NP navigated the complexity of assessing a patients’ existential suffering in addition to their symptom burden. While initially the nurse thought that assessing suffering would be more straightforward by assessing symptoms and physical decline, such as “pain is 9/10, their shortness of breath is 7/10 on their ESAS and, you know, I can see that they've been declining and they're obviously suffering” (P49 – NP), they learned through experience that: “for most people it's more existential suffering that is the cause of their seeking MAiD... it's more so the anxiety associated with, you know, what's coming and what's changing and, you know, their experience with their family and being dependent and, you know, what they've lost in their day-to-day life and, you know, their activities of daily living” (P49 – NP). 103 The same nurse described further how they assess suffering in a patient-centred way, “Whatever the patient tells us is their pain, that's what their pain is. If it's a 9/10, it's a 9/10. Even if you don't think that they look like… you know, like they're in pain... So, I think we can kind of get lost up on digging around as to whether or not it's actually true or it's actually suffering or actually if they qualify. And it's, like, well, they have a disease, death is reasonably foreseeable and this is what they are telling you their experience is, so that's it” (P49 – NP). In order to assess patient suffering, the nurse has included questions about coping and how the patient is feeling within their assessment, while digging deeper, asking patients “Why do you think that is?” From this question, the nurse explained patients then are able to articulate where their suffering is coming from whether it’s a “loss of dignity”, or “feeling depressed” (P49 – NP). Furthermore, this nurse voiced the need to further assess feelings of depression. To do this, the nurse voiced they ask the patient, “if I told you no today... If I said, "Sorry, you don't qualify", what would you do” (P49 – NP). With that question, nurses can assess if there is any concern for the patient’s mental health and suicidal ideation or if the feelings of depression are “reasonable” given the patient’s situation. The nurse went on to say, “I don't think I've ever met one person who I've said no because I was worried about their… you know, their mental health… Just because, like I said, it's very reasonable that they're depressed” (P49 – NP). Similarly, other nurses also spoke about how they assess the complexity of suffering in regards to assessing patients’ quality of life and how that might impact someone’s interest in accessing MAiD: 104 “So… when I said to her, "Can you tell me about your quality of life and how things are for you?" She said, "I have no quality of life."... She can't toilet herself. She said, "I can't make myself a cup of coffee. I'm totally dependent." And she's 76 years old” (P30 – NP). “So, they're very strong people in themselves. They live their own life in such a way and usually have done that for well before you've met them... That they live on their own definition and their own circumstances and they… that is of the utmost value to them... So, they are… so, to them, oftentimes, to live in a different way is intolerable to them” (P02 – NP). These quotes illustrate the complexity of suffering, the multiple dimensions of suffering, and the ultimately the type of communication nurses use when trying to gauge or understand a patient’s suffering. 4.3.2.4 Using Assessment Tools and Templates. While the above examples show nurses using open-ended questions to complete their assessment, some nurses also discussed having more structure in their assessment or using specific assessment tools to help them complete assessments. One nurse described using tools such as the Palliative Performance Scale, the Rockwood Frailty Scale, and the Golds Standards Framework about end of life (P02 – NP). While nurses did mention the use of specific assessment tools to assess symptoms, few nurses described how they utilize them and the associated communicative practices. In addition to using specific assessment tools, another nurse indicated they use a standard template for their assessments to allow for more structure in the assessment. This nurse found having this structure was helpful for them both during the assessment, and afterwards when completing their documentation, and making plans for next steps: 105 “I actually use that every single time. I go in with that template and I have each question laid out very carefully of how to phrase it and then I usually go through and I basically quote the patient directly whenever I can and I find that can kind of cue me back to… when I'm talking later on I can kind of jog back to that question and ask them to elaborate. And also, afterwards, right, when I'm sitting down and I'm finishing up all my documentation and maybe I need some time to kind of reflect on… you know, on what I'm going to tell the patient, it's helpful then” (P49 – NP). Similarly, another nurse voiced that they have a specific list of questions to ask going into the assessment, however some of the questions they answer through observation rather than asking specific questions. In the following quote, the nurse explains that age, competency, and certain aspects of physical assessment can be assessed through observation: “I'll say to my patients or whoever is with them that, you know, I've got my list of questions I need to ask and a lot of it you can figure out as you're going. You know, is someone over the age of 18? Do they have health care coverage? Are they capable and competent? You gain so much of that insight and competence when you're having a conversation with someone, especially a conversation of this nature, and then if you've got a lot of the medical documentation around grievous or irremediable medical conditions and declining in physical capacity or functionality and things like that, it's not that difficult to assess, especially when you walk into someone's house and they've had it completely retrofitted, you know, for their father who's 55 and has ALS” (P01 – NP). As part of the assessment, nurses must ensure that the patient is not feeling pressured into choosing MAiD. This is a specific question that nurses described asking directly to patients to ensure this requirement is met. While one nurse explained for the most part that they complete 106 the assessment with family present if the patient is willing, this nurse voiced they complete part of the assessment “without family or anyone present” to ensure “that someone’s not pressuring them to do this” (P25 – NP). The nurse stated: “The only question I like to ask without family or anyone present is kind of the... in assessing that they don’t feel like that someone’s pressuring them to do this… Which I’ve never had any concerns about. But I just sort of have a little chat about that. Are they feeling pressure or feeling like part of… you know, that they’re a burden to their family... I think that most people say “yes” of course. I feel some amount of burden, but it’s just teasing that out to make sure that that is not the sole reason that they’re requesting this. And… and everyone kind of laughs at that… of course not. You know, it’s just that of course there’s… there’s… you know… they think about family and they think about how hard it is on them” (P25 – NP). The variety between using general questions to open up a broad conversation compared to using a specific template with carefully worded questions shows the range of strategies that nurses use to complete an assessment. 4.3.3 Setting the Scene for the Provision Throughout the interviews, nurses voiced covering specific topics throughout the assessment. Nurses described the importance of going beyond the specifics of the assessment to describe the provision to patients and their families. One nurse shared broadly that part of the assessment includes the requirement that “people understand, you know, risks and benefits and, you know, what is going to happen and what the expected outcome is and that people can change their mind and all of those things” (P01 – NP). Most commonly, nurses reported communicating about the moments surrounding a patient’s death, and logistics after death. While these 107 discussions start in the contemplation phase, and continue all the way until the day of the provision, this section focuses specifically on the communicative practices of NPs at an assessment to prepare patients and their families for what to expect on the day of the provision. As one stated about their role, “ultimately, we're responsible for assessing for the eligibility criteria based on the legislation but you're also usually providing a lot of information about, you know, what's required and I go into quite a bit of detail about the day of the provision and what to expect and, you know, things to think about.” (P02 – NP). Therefore, while their role as an assessor may be only to assess eligibility, this nurse described they, “take this [role] really seriously and we try and support that person and their family through the whole journey” (P02 – NP). 4.3.3.1 Describing the Patient’s Death. In regards to the day of the procedure, NPs take time in the assessment, if patients are open to it, to explain what the provision will be like for the patient. In particular, nurses take time to explain which medications will be given, and how quickly the dying process will be once the medication is given (P02 – NP). The language nurses use is clear and direct to indicate what the moment of death will be like, including what a patient may experience, as well as what a family might observe. Examples of how nurses say this include: “as soon as we start to give you medication, you’re going to feel super relaxed and you’re going to… you’re just going to feel sleepy and you’re going to go to sleep... you’re not going to be aware of anything” (P18 – NP) “Depending on what they want to know, you know, I tell them each of the medications and just give them an explanation of what happens. You know, the first medication will make you quite 108 sleepy and you very likely will fall asleep pretty quickly, which I reiterate in case people want to have conversations and talk to people. I make sure they know as soon as they start, they’re going to fall asleep pretty quickly and so, to be ready for that... I think that’s kind of surprising to people how fast that happens” (P25 – NP) “[I tell them] which medications are administered, how long they take” (P02 – NP) In addition to describing the moments surrounding death, one nurse also voiced the importance of explaining the two different routes of medication administration available for patients to choose in Canada, either intravenous (IV) or oral: “And then, I always ask people to, you know… if I can tell them about the procedure. It depends. Sometimes, they’ve already had an assessment and so they’ve already gotten a detailed account of what the procedure will be like... And sometimes they haven’t yet, so I tell them what that looks like. As you know, there’s an oral and IV route and I always make people aware that there are two routes. But I do let them know that basically everyone’s been using the IV route. I think there’s about ten… actually, I don’t have updated statistics on that, but as of our conference in May, there was only, like, ten people in all of the country who’s done the oral route” (P25 – NP). 4.3.3.2 Logistics After Death. While describing what important details nurses aim to include during the assessment phase, two NPs shared the importance of talking about the moments after death including details about the funeral home arrangements and coroner involvement. In relation to the coroner, one nurse highlighted the importance of discussing coroner involvement due to this unique aspect of a death after MAiD. The nurse stated, “that's an unusual experience for most people, they don't have to know about that 99% of the time... And talk to them about, you know, what to expect from the coroner. The 109 (PV(5) mechanism requires that the coroner's office will speak to the primary practitioner first but then also will call the family. And so, they want to confirm it's an expected death and that things went well and the families don't have any concerns” (P02 – NP). Another NP also explained to families that they will be required to speak to coroner after the patient death as a way to prepare families for this unique requirement after a medically assisted death (P01 – NP). 4.3.4 Communicating about Ineligibility Within these interviews, nurses spent a great deal of time speaking about the context of the assessment and how they communicate within the assessment, however few nurses shared their experience of communicating eligibility after an assessment was completed. One nurse specifically spoke about how if a patient’s case was straightforward, they may feel comfortable communicating eligibility after an assessment. The nurse described they might say, “I do feel you qualify… you may or may not have had a second assessment… that is absolutely essential before we can go ahead” (P25 – NP). The nurse at this point stated after confirming eligibility, they will speak with the patient about what timelines they are expecting, as well as share their timing restrictions as well (P25 – NP). The remaining nurses included in this study who spoke about communicating eligibility, primarily spoke about the difficulty of communicating when a patient may be deemed ineligible for MAiD. This section will focus on NPs and how they voiced the challenges of communicating ineligibility to patients. One NP described how emotionally challenging it is to tell a patient they are ineligible for MAiD. In the interviews, the nurse stated “probably the most difficult part of this assisted dying job is telling people that they don't meet criteria because the only people who connect with 110 us are people that are suffering” (P42 – NP). Another nurse highlighted how distressing it can be when deeming someone ineligible for MAiD as they receive the disappointment felt by patients when they receive the news: “I made her ineligible... the patient was very disappointed… And very frustrated. It was quite personal to me in terms of… you know, was very direct about it was me that had let her down, that I had created this roadblock for her. So, I found it very distressing” (P02 – NP). The same NP spoke about how deeming someone ineligible could be particularly challenging if another practitioner has already found the patient eligible. For example, “it can be really tricky when the primary has already made them eligible where you're having to come in say you don't feel they're eligible, that they don't meet the criteria... So, you have to have great comfort with yourself and your own decision about that... you’ve got to be able to sleep at night and know that you are confident they made the eligibility and that gets tricky in circumstances, as I said, that can be quite gray” (P02 – NP). Because of the challenges with deeming patients ineligible for MAiD, another NP described that in order to avoid having to deem someone ineligible, they might ask another practitioner to complete the capacity assessment rather than have to make the decision themselves (P18 – NP). One nurse shared, “if I had to do another capacity assessment, I would say that they don’t qualify. So, I might even remove myself and say… let’s find someone else to do capacity because every other case, it’s been very clear and the people that I’ve been talking to are… there’s no question on their… what they’re experiencing and what they’re going through” (P18 – NP). 111 Unfortunately, while nurses spoke about the incredible challenges they face when communicating ineligibility, they did not describe in the interviews how they try to communicate with patients about this difficult decision. On the other hand, one NP discussed their strategy of how they communicate with family members about ineligibility once a patient has lost their capacity to consent. While this can be a very difficult situation because a patient’s preferred option is no longer available, nurses aimed to support families through this difficult time. One NP reported they would support families with where they are at, and focus on what they can do for the patient. The nurse stated in this type of situation they would say, “it’s okay, let’s not stress about capacity anymore. We’re just going to talk about how we’re going to make them comfortable as best we can at end of life” (P18 – NP). In this way the NP aims take away the family’s anticipation or hope for MAiD and works with the family to move forward in a way that acknowledges that MAiD is no longer an option and change the focus to care options that will keep the patient the most comfortable. 4.3.5 Summary Overall, during an assessment, nurses spend time in conversation with patients and families to discuss where the patient is at in their journey, how they got there, and how they are feeling related to both specific symptoms, and overall suffering. Nurses use various strategies to understand where patients are at whether it is through observing a patients’ current circumstance, providing time for patients to open up about what is important to them, or asking specific questions. During an assessment, nurses also take time to provide information about what patients can expect throughout the process of MAiD, and more specifically, at the time of the provision. 4.4 The Waiting Period 112 The waiting period is characterized by the time after a patient has been assessed and approved for MAiD and before the day of provision. Throughout the interviews, nurses, both RNs and NPs spoke about the communicative practices and conversations they had with patients and families during this period of time. The nurses who described aspects of communicative practices throughout the waiting period had various roles. Some nurses were working as part of the MAiD team, while others worked on a hospital unit or in the community where patients were awaiting the procedure and those nurses may not be involved in the MAiD process specifically. The waiting period held various aspects of communicative practices to build relationships with patients including listening to patient stories, checking in with patients, setting the scene for the provision with patients and families, and navigating challenging situations through communication. 4.4.1 Listening to Patient Stories One nurse who is part of the MAiD team voiced listening as an important aspect of building relationships with patients. The nurse stated, “as the patient goes further along their care trajectory, we often get lots of stories about their decline in health and how that’s impacted their quality of life and their loved ones. The fact that they feel like they’re a burden to their family comes up quite a lot... again, we just listen and… and hear and we’re very fortunate that we can just be a… can listen to all these patient’s stories. It’s a real honor to hear how… how their care has been. And then, again, we walk them through the process ” (P03 – RN). Additionally, a community health nurse who cared for patients who chose to pursue MAiD shared, “I find that just being present with them and listening is the best thing that I can do” (P16 – RN). One reason the nurse felt this was important is because the conversations are difficult. 113 They stated “it's a really hard thing to try to, you know, comfort somebody because I don't really know how that would feel to make that decision for myself” (P16 – RN). For that reason, listening to their stories is an appropriate intervention and supports building a relationship between the nurse and the patient. 4.4.2 Checking in With Patients In addition to listening to patient stories, providing time to check in with patients during the waiting period and answering any questions they might have were highlighted as important by some nurses. An NP who is both an assessor and provider commented that after an assessment they provide patients with the opportunity for patient-initiated check-ins if needed. The NP stated, “I always give them my card with my cellphone number and let them know that they can call or give that number to anyone… any of their family members or friends if anyone has questions” (P25 – NP). Another nurse described they leave a “process sheet” with the family after an assessment so that during the waiting period they have something to refer to that includes the criteria and process for MAiD as well as the names of the MAiD team to support the patient in remembering who they can contact if they need support after the assessment is complete (P42 – NP). In this way, if the patient has any questions or concerns, they have the opportunity to reach out to the NP to discuss more. On the other hand, one RN in particular who was part of a MAiD team shared in detail the frequent nurse-initiated check-ins that they were able to provide patients who were in the waiting period. While this nurse acknowledged that not all nurses have the flexibility to meet with patients and families during the waiting period, they spoke in detail about their role during the 114 waiting period. This RN would meet with patients daily in the hospital and for patients who were not in hospital the nurse would meet them in the home at least once, but still check in with them via phone call frequently. The nurse described this through the following quotes: “I visit the people… patients every day in hospital, Monday to Friday, which is a little different than some programs, and visit with the families extensively” (P51 – RN). “I'll go out to the nursing home to at least see them once in the nursing home... I still call them every second day… And make sure that… how they're doing. I talk to the patient, as well as the family. I often ask them just to put me on speaker, if they have that ability to do that. And you do form a bond, even though… over the phone… Even though you don't see them” (P51 – RN). The nurse indicated these check-ins were helpful to build the relationship between the patient and the MAiD team. The nurse explained these quick check-ins might sound like: “How are you doing today? Do you have any more questions? What can I do for you?"... And, you know, share a joke or two or whatever but it's just that touchpoint and it may be 10 minutes, so it is sustainable to do... it's just something that I just felt was very important” (P51 – RN). The same nurse voiced that these daily check ins helped the nurse to cope with their role in MAiD and has helped them to understand: “that this individual truly has no doubts of what they're doing and this is absolutely what they wanted and you're able to understand that by being through that journey with them and knowing that at the end it is the right thing for that patient and the family sometimes” (P51 – RN). 115 This nurse acknowledged that for many programs there are not the resources to check in with patients so frequently. 4.4.3 Setting the Scene During the waiting period when nurses are speaking to patients, one thing that they described doing is discussing logistics with patients and sometimes their families. When supporting patients who are pursuing MAiD, nurses voiced the importance of preparing patients and families about what to expect throughout the various stages of MAiD. One nurse stated “I thought of my role initially as somebody who sets the scene for the clients” (P14 – RN). In order to do this, nurses described using direct language to talk about what is likely to happen on the day of the provision, as well as providing options to create a patient-centred provision. While this may appear similar to the conversations had during the assessment phase, the context is different. During the assessment period, NPs must gain informed consent from patients, ensuring that they clearly understand that by going through with a MAiD request, and consenting to the procedure, that the ultimate outcome is the patient’s death. Once a patient has had that realization and continued to move forward into the waiting period, the nurses in this study describe a slight shift in the goal of these conversations. Rather than focusing on informed consent, the goal shifts to preparing patients and family for what they might expect to see and feel on the day of the provision with an aim to improve the experience for the patient and family. The next three sections will highlight how nurses describe these conversations during the waiting period. 4.4.3.1 Using Direct Language. To set the scene and prepare patients and families, for the MAiD process, nurses reported the importance of using direct language to validate patient choices and to provide specific information about the provision and practical aspects of care. Firstly, nurses spoke about the importance of being direct with patients and validating their 116 choices. As one nurse shared, in relation to working with patients, “they want someone to be able to have that conversation with them and to not be skirting around the issue” (P20 – RN). The nurse speculated it would feel reassuring to have a nurse speak directly about MAiD because speaking honestly will help validate peoples’ choice as part of holistic care for the patient, to deal with what the patient’s needs are at that moment (P20 – RN). The same nurse voiced, “I think that’s very reassuring for someone who is deciding to actually take the ultimate control over their life... They’ve made this choice. They are at peace. They… it’s that validating peoples’ choice. It’s that whole holistic piece. Everything in the whole philosophy of nursing in… you know, and they… you’re learning things all through school and after school about what holistic care really means. And holistic care isn’t always making everybody perfectly better. Holistic care is dealing with what the patient is bringing to you and what their needs are at that moment. And we need to start being okay that we’re not going to fix everything” (P20 – RN). Secondly, nurses spoke about using direct language to describe what will happen during the provision. For example, “I knew that families needed to know that the color… the patient’s color changes and the temperature changes during the propofol administration. I’ve been told that that was helpful for the family to know so… because otherwise, they… they just expected the patient to still be pink, because they usually see people die on television and not die in real life” (P03 – RN). 4.4.3.2 Providing Options to Create a Patient Centred Provision. Once patients have been approved for MAiD and they are in the Waiting Period, nurses described taking time to have detailed planning conversations with them. These conversations provide patients options 117 surrounding the provision and allow nurses to support patient-centred care, by ensuring patients are aware of their options and encouraging patients to make decisions that support their wishes. When discussing provision logistics with patients and families, many nurses described asking patients and their families what they want in a direct way and offering options of the types of decisions patients can make. The following examples highlight ways that nurses discussed the options that are available for patients to choose for their provision. These examples range from asking patients who the patient wants to be present at the provision, where the provision should take place, what the patient desires for the day including food, activities to complete that day prior to the provision, and any rituals they want to happen at the time of the provision whether they are spiritual or religious rituals, words they want to be said, or music they want to have playing. One nurse described calling a few days prior to the provision to ask the following questions: “I want you to think about who you would like to have with you? What you would like to be doing when this is going on? Where you would like to be? Would you like to be in your bedroom, would you like to be in a favourite chair, would you like to be sitting outside on your deck? Who do you want surrounding you? Would you want some music to be played? You know? All of these things to, again, help them set the scene because I look at this as a good experience, as strange as that may sound. I want to help them… to provide them with a good death and that involved a lot of things around it” (P14 – RN). Another nurse who works in the hospital stated that the day prior to the provision, they check in with the patient: “I think, you know, we try and talk to the person about, you know, is there anything special that you would like... when you're thinking about tomorrow?... Is there a special 118 meal you'd like? ... Who would you like to have with you? Would you like to have a shower that morning? ... Is there something special you'd like to be wearing? Do you want to have... a pastor or the priest or whoever come in? … Is there some kind of a ritual that you would like to have? … Who would you like to be present? Would you like to have music playing?” (P34 – RN). Other nurses voiced asking similar questions to support a patient-centred provision: “I would meet the patient and their family, answer any questions that they have about the process, talk a bit about who they were and what they would like to see during this day, explain to them that they can make it whatever they want, they can bring their animals in, their alcohol in, music in, whatever it is they want to make this time special for them and also that the nursing role, of course, is to start the intravenous” (P51 – RN). “I usually bring that up…Right from the get-go... What their vision of their end would be… If it is death at home or in the hospital. And some people say, you know, "Absolutely, I don't want to die at home." Or some say, you know, "I really would love to go to my cottage", and… "And have medical assistance in dying... how feasible is that to get done?"” (P51 – RN). “Another thing is that… so, our MAiD team will… will ask people if we’re… if… the patients if they’re spiritual or religious and will let them know that they can wear whatever they want for the day of provision. They can eat whatever they want and you know, they can have whatever music they want playing or they can… I think one person honestly… never when I was there, but had Price is Right playing. They loved Price is Right... You know, so… so, we let them know that there is benefit… not benefit, but there is this added choice, that they choose how their final, you know, moments are 119 spent... And I think that that’s lovely, that the MAiD team would suggest that.” (P55 – RN). By knowing these specific ways that patients can personalize their provision, nurses can make space for a patient-centred MAiD provision. One nurse shared that by allowing time and space for these discussions, the patient is able to have control over the situation (P22 – RN). Another nurse voiced the value of being able to: “create something special for that day… and part of it for the person who’s dying, but part of it so that the family… so that there’s something for the family to remember or to… like, and not just the sad part of the day of losing someone, but to make it beautiful or to make it special” (P55 – RN). While not specifically relevant to creating a patient-centred provision, this same nurse also discussed the uncertainty they experience in conversations about MAiD, worrying whether supporting the patient to make this day special could be considered counselling. The nurse shared, “I guess it can’t be the nurses’ job because that would be considered counselling, but… and I don’t know if the social worker really would… whose role it is, but there’s a whole untapped area of, like, really being able to create something special for that day” (P55 – RN). While many nurses spoke about the importance of working with patients to make the day special, a few nurses voiced that some patients may not have as many specific wishes for the day of provision highlighted by the following two quotes: “And some [patients] were kind of a bit more loose, they're, like, no, whoever comes--comes, whatever happens--happens” (P22 – RN) 120 “And some people don't have any wishes at all. I mean, one man said to me as I brought his medications in… and he said, "I'm not taking these today. What difference does it make? Will it kill me (laughs)?"... Ya, you're right. You don't have to take these this morning” (P34 – RN) Regardless of whether patients have many or few wishes for the day, one nurse explained “we kind of just, you know, always check in with how they're feeling, what they would like, if there's anything else, kind of looking at that part of it more so than the logistics part” (P22 – RN) to ensure patients’ wishes are met. While there are so many potential options for patients to choose related to how the provision moves forward, nurses clearly voiced the importance of communicating with patients to ensure they know what their options are and that patients feel empowered to plan a provision that meets their wishes. 4.4.3.3 After Death Logistics. In addition to planning for the provision itself, nurses described the importance of revisiting conversations about the funeral home and after death logistics to ensure families are prepared. For example, one nurse stated they will either speak to family members or patients to ensure these arrangements have been made in advance. Another nurse voiced that in case there is a situation where patients or family members have not yet thought of funeral logistics, they bring a list of local funeral homes with them to each provision (P14 – RN). Examples of how nurses reported speaking with patients and/or families about after-death logistics include: “"Have you made arrangements with the funeral home?"... I may be speaking to the wife about this or to the client. "Yes, we've made arrangements." "So, you know that you can call them when the time comes for them to take the person away?" "Yes." "Do you have an expected death at home certificate?" "No, I don't." "Okay. This is who you need to call 121 to get that." And then, again, I keep some of them with me and I keep death certificates with me in case” (P14 – RN). “I have a list of funeral homes in case somebody horrifically would not have… I mean, I did come across somebody who had not made arrangements and when I had called her a couple of days beforehand, she just said, "Oh, I'm a part of the memorial society, so I don't have to worry." ... And I said, "But have you made arrangements?" "Well, I don't know. Maybe my son has. I don't know." So, I got in touch with her son and spoke to him at length and he had not but then he was going to” (P14 – RN). “We talk about aftercare. The funeral home they're going to use…” (P51 – RN). All of the above quotes describe the emphasis that nurses placed on the importance of discussing after death logistics prior to the day of the provision. In the quotes highlighted above, nurses used direct language to ensure there is no ambiguity in the questions they are asking to ensure that after death plans have been discussed prior to the provision. 4.4.4 Navigating Challenging Situations through Conversation Nurses spoke throughout the interviews about challenging conversations they had with patients and family members during the waiting period. These included challenging conversations with family members who were having difficulty coping or struggling with their loved ones’ decision, and challenging conversations with patients about the planning process. 4.4.4.1 Challenging Conversations with Family Members. Nurses spoke about challenging conversations with family members primarily at this stage when a loved one was struggling with the patient’s decision. One nurse voiced how they would communicate with a family member who was struggling with their loved ones’ decision: 122 “Well, I would probably ask them lots of open-ended questions and try to help them as best I can... I have been very cognitive about my own personal opinions and try not to bring that in. For me, that’s just a very opinionated bossy… not bossy in a bad way, but black and white and practical. I’m very much an advocate for patients, so sometimes I may come across as not being super warm and fuzzy and going to cry all the time. But I’m doing this for my patients” (P20 – RN). Another nurse described two difficult situations where family members who were having difficulty coping, or were not in support of the patient’s choice, were asking the nurse for their opinion. The nurse shared how difficult responding to this question was for them, as they tried to ensure their opinion on the subject was not brought into the family and patient discussions: “I've had a case where the spouse was very angry and upset that they were choosing that. The children… the adult children were angry with the mother because she didn't agree with the father… And you're listening to all the sides of it and so your kind of caught up in the middle and not being able to say and, you know, you often get asked what would you do if you were in this situation? What do you think my father should do? How do you feel about this? Or, you know, you've been looking after my dad for the last two weeks. Are you going to be there tomorrow? And so, how do you respond to that without saying… I don't feel comfortable saying I'm a conscientious objector because I don't want them to… you know, it doesn't matter… it shouldn't matter to them what my opinion or judgment is. I mean, I don't want them to think I'm judging them and I don't want to get caught in reasons but I haven't sort of come up with a good answer to, you know, why I'm not going to be there. Or I… you know, I can… I think I… one day I said, "Well, I'm not on that team tomorrow."” (P34 – RN). 123 The nurse went on to describe how they respond when patients ask them for their opinion: “Then, I say… I try and just put it back to them. You know, it's not up to me to… you know, it's not my decision to be made, it's not… you know, this must be really difficult for you, this is a big decision, but it's not my decision to be made... I don't know what I'd do if I were in that situation. I'm not… you know, I haven't been in that situation. I don't know how I would react but, you know, it's not about me. This is your decision and it has to be your reason... You know, because… and, I mean, I don't ever want… I would never want to make someone feel like you're in the wrong or right because what I decide isn't relevant to what they choose” (P34 – RN). 4.4.4.2 Challenging Conversations with Patients During Planning Process. During the planning process multiple challenges arose that nurses addressed through communication. These included talking with patients about including their family in the process, discussing whether the nurse will be present at the provision, and managing conversations when patient wishes cannot be met. In these situations, a common way that nurses addressed challenging conversations was to explore patient needs, avoid judgement, and provide options to patients. Nurses took time to address challenging patient situations by exploring the situation further and thinking about what the patient’s needs were. For example, when a patient wasn’t sure whether they would include family members in their provision, the nurse described how they would respond: “I feel pretty confident in doing that end of sort of I guess you'd call it the social work end of things. I mean, sometimes I've said to people, you know, "You've decided not to tell the grandchildren that grandma's having MAiD and why is that?"... And they'll say, "Well, we don't think they can handle it." And I'd say, "Well, how… you know, how old 124 are they?" "Well, they're 20, 21 and 23." And I think, you know, the damage that's created by you not including these adult children is far bigger than the damage of them… well, there is no damage, I mean, death is death. But being in a big circle holding onto each other, being with grandma as she takes her last sweet breath, breathing in that last breath, what can be more beautifully impactful than that? So, I have been responsible, I think, for some families reconsidering and then I hope and pray that everything goes okay and it all… it has” (P40 – RN). In another situation when determining who will be in the room at the provision and whether the nurse will be present, another challenging conversation, the nurse explored the patient needs by asking what they wanted. The nurse reported stating to the patient and family, “this is who is going to be in the room. If you need extra support, I’m happy to be here, but if you need it to be a… a smaller room, I understand. And they did not want extra people. So, I didn’t actually stay in the room and… which was good that they could articulate what they wanted” (P11 – RN). Regardless of the situation, nurses navigate difficult conversations with patients about whether they will or will not be present for the provision. Secondly, in challenging situations where a nurse may have differing opinions from a patient or family, nurses work hard to avoid expressing judgement towards patients and their family members. For example, when a patient asked their nurse, who is a conscientious objector to MAiD, if they would be present, the nurse struggled to respond. In the end, the nurse found a way to let the patient know they wouldn’t be able to be present on the day of the provision without making known their own personal beliefs about MAiD by stating, “my company does 125 not participate and therefore I can’t be present” (P32 – RN). However, the nurse described feeling awful about the decision with fear of abandoning their patient: “But I felt awful too, because I do… I kind of felt like… oh, am I abandoning my patients by saying that? Am I not supporting them at the most challenging…? Like, as a palliative care nurse, you want to be there until the end and after” (P32 – RN). Finally, providing options is another way that nurses address challenging patient situations through conversations. One example of this is when patient needs can no longer be met. For example, when patients aren’t able to have their first choice of option for a MAiD provision, one nurse described how they would communicate this to patients directly by acknowledging the patients desires and offering an alternative option: “I’m sorry, you wanted this at home. It doesn’t look… it doesn’t look like it will be possible. Would you want to have the procedure done in hospital?” (P50 – NP). Similarly, when timing of a provision has to change, the nurse is responsible for communicating this to patients. For example, one nurse reported having to call families and say, “I know you were counting on four but is six okay?” and then having to negotiate from there (P40 – RN). These examples show nurses using clear and direct language when a patient wishes could not be met, and also provided an alternative option that is available to the patient. Alternatively, another nurse spoke about having a proactive conversation to explore options with a patient about what the patient would want if things do not go according to their plan. This nurse shared openly and honestly to proactively protect patient autonomy and choice: “There was one gentleman I can remember in the home who was at significant hemorrhage risk and he was a florist and we talked… if he were to fall in the home, there is a good chance that you will bleed out… have a terminal bleed event… and that in that 126 case, do you want to be transferred to hospital to have that reversed or do you want to have emergency medical… medication orders in the home to keep you calm as you exsanguinate basically... he had qualified for MAiD and he said… I would actually like to be transferred to hospital and have that reversed so that I could still choose my… my date of death because that is so important to me” (P11 – RN). In cases of challenging conversations that nurses described having with patients, exploring patient needs, avoiding judgement, and providing options support communication between nurses and patients. 4.4.5 Summary Nurses who are working with patients who have been approved for MAiD but have yet to go through with it, are in unique positions to build relationships with patients and their families and connect with them to ensure that the patient feels comfortable with all aspects of the provision. As well, some nurses take this time to address any challenges patients might be facing and have conversations with patients that may be difficult to have. 4.5 The Provision When it comes to nurses describing how they communicated with patients and their families at a provision, a few common ideas were discussed. These key ideas included saying goodbye, building relationships on the day of a provision, creating a comfortable environment, providing reassurance and validation, ensuring final consent and patient readiness, and pronouncing death. 4.5.1 “Saying Goodbye” “Saying goodbye” and the idea of closure was a topic discussed by a few nurses throughout the interviews. Most often, the act of “saying goodbye” was described by nurses to 127 occur in the days leading up to the provision, or perhaps on the day of the provision, but not at the provision. However, this section is included within the provision section as it is very close in time to the provision and, in the waiting period, not all patients will go through with MAiD and therefore nurses do not necessarily gain closure during the waiting period. At the time of these interviews, nurses were unsure and struggling with the best way to gain closure and how to say goodbye to patients when they knew it was the last time they would be seeing the patient. One nurse voiced that in discussions with their colleagues, they have come to understand that the act of closure depends on the specific situation related to “the individual nurse and the relationship and also the timing” (P34 – RN). When discussing the specifics of what they say when saying goodbye to patients, most often the act of closure includes an aspect of voicing gratitude to be involved in the patient’s care for a period of time. For example, one nurse shared their colleagues’ approach to saying goodbye, stating they, “shook this gentleman's hand and said, "It's been a pleasure looking after you", or something to that extent” (P34 – RN) utilizing both physical touch and verbal communication for closure. Another nurse who was planning to be present for a provision, but was unable to make it on the day of called the patient and told them: “another nurse was going to come and I was sorry that I wasn't able to have the last visit with him but I had appreciated our time and he just was very happy and he's, like, "Oh, that's no problem and you take care. And, you know, it was really nice knowing you." And I was, like, "Okay."” (P56 – RN). Similarly, another nurse stated “I consciously made the effort to say goodbye to him before [MAiD]... I did go in and I said, "I just want to say goodbye to you and how much I've enjoyed 128 working with you” (P06 – RN). This same nurse described the purpose for this verbalization of closure was to give the patient their respects and acknowledge them. One aspect of saying goodbye that at least two nurses struggled with is who benefits from getting that closure. For example, one nurse voiced, “I really struggle with what do I say? How do I… and is this for me or is this for the person? Who is this benefitting?” (P34 – RN). Another nurse described the challenge they had with figuring out how to say goodbye: “I went to… the spiritual guidance counselor on the unit and I asked him, I said, "How do I say goodbye to this patient? I just don't know how to do it without making him feel bad or being awkward and I just… or how… should I say goodbye?” (P06 – RN). For example, when this nurse did end up saying goodbye to the patient they struggled with whether it was the right thing to do to as the patient “got weepy and emotional” and the nurse worried they “made it hard for him” (P06 – RN). This nurse indicated that more often, they indirectly say goodbye to a patient in their own way, although they did not share what this would look like (P06 – RN). Similarly, the other nurse who voiced struggling with the idea of closure stated if they don’t know what to say to the patient, they might not say anything, and rather, “sometimes I’ll just squeeze their hand” as an act of closure (P34 – RN). Overall, verbal or physical communication were ways in which nurses say goodbye to their patients. 4.5.2 Building Relationships on the Day of Provision Depending on the role of the nurse, some nurses may not meet patients until the day of the provision. While most NPs will have met the patient before the day of the provision for the assessment and therefore had some time to build a relationship prior to the provision date, one NP described a situation when the patient and family was unknown to them as a provider of MAiD, highlighting the need for establishing a relationship quickly: 129 “But the weird part is… I don’t know the families, I don’t know the situation. I’m going to someone’s house. I’ve met them for five minutes. I’m doing the capacity assessment. The family is hugging me on the way in the door, the… the… they’re so excited and happy that this is going to happen. I don’t know anyone, I don’t know the patient. I look at the history, I do a capacity assessment, I give medications and then I walk out the door” (P18 – NP). On the other hand, for many RNs, as the nurse present to start the IV, they will likely not have met the patient or family members before. For them, introductions and building a relationship quickly on the day of provision is very important. Many nurses voiced the first thing they do when meeting the patient and family is introduce themselves to the patient and family (P09 – RN). This introduction for most nurses includes a description of who they are and what their role will be within the processes of MAID (P14 – RN; P20 – RN; P29 – RN; P41 – RN; P42 – NP). Some examples of how nurses described this interaction include: “I just kind of ask how they're doing and how they're doing that day and introduce myself to the people that are around them, so that, again, they can feel a bit more confident in somebody else being there that's just walked into their home in this very intimate surrounding” (P14 – RN). “Typically, I’d go in and just say, like… this is… you know, this is who I am. This is my role. This is why I’m here and my job is to, you know, to discuss symptom management and you know, if there’s any kind of unresolved fears or anxieties or concerns about care” (P41 – RN). “I always identify who I am and introduce myself, tell them I am the nurse here to start the IVs because I understand they are going to be partaking in the MAiD. And they say… 130 yes. And usually… are you doing it right now? And I say… no. And then I say… I’m just wondering… I want to look at your… your arms and choose a good IV site. And I always say… you know, the doctor requires two sites. I would like to know where you’re planning on being when you… when you do this” (P20 – RN). These examples of how nurses introduce themselves all provide patients and their families with specific information about who it is that is supporting them, and what each team member’s role is. These quotes also give the impression that nurses are direct with their role, and involvement in the MAID process. A few of the quotes also indicate that when introducing themselves to patients, they also ask the patient some questions to get to know the patient and understand their frame of mind. As one nurse stated, “it's reasonable, like, when you arrive somewhere to… like, all of us introduce ourselves and explain our role with the team” (P42 – NP). When it was not possible to meet the patient in advance some nurses stated they arrived early to the provision in order to spend time talking to family to help build the nurse-patient relationship (P09 – RN; P14 – RN; P39 – RN). One nurse described that at this time they would take time to learn everybody’s names and their relationships to the patient and at one visit with a family they spent time looking at photos as a way to build the relationship: “So, to me it's really important if you can try and learn people's names and the relationships. I've had the privilege of for most of the provisions I've been present to meet some of the family members ahead of time, so that is incredibly helpful. And I know we had a lady a few weeks back who was 98 and I met with she and her daughter and son-in-law and we sat on the couch and looked at photo albums and… you know, after we had done all we… you know, the necessary things, she wanted me to look at some photo 131 albums with her. So, I sat on the couch and she told some stories and we laughed” (P01 – NP). Similarly, if the nurse knows in advance that they will be meeting a patient for the first time on the day of the provision, they may also decide to call in advance to introduce themselves. For example, two nurses shared they might call a patient in advance and state, ““This is who I am. I'm going to be coming on such-and-such a date. I'm going to be coming a little bit earlier than when you've arranged with the physician and this is what I'm going to do when I'm there”” (P14 – RN). “"It'll be me that's coming. I'm working with so-and-so to support you and to support the doctor. And that… you know, are there any things that I need to know about or you'd like to share with me that would help to make this time more either meaningful or comfortable? Are there things that, you know, you would like to tell me about that would help?"” (P29 – RN). Another nurse described taking the time to build relationships and support the family if the time allows. This nurse described that they spend time with family members outside a patients room, as the patient spends last moments individually with family members: “then they'll want some kind of time individually with family members, so we'll, like, sit in the other room and chat with the family and just say, like, "Hey, like, this is a really tough morning. Like, how are you guys doing or how did you spend the morning before you got here or did you guys do anything special last night?"... Just kind of, like, have some questions like that and acknowledging but if people don't want to talk to you, then they don't have to talk to you… Because sometimes for some folks that's not helpful… But people are usually pretty open” (P42 – NP). 132 By taking time for introductions and building relationships with the patient and family members, nurses set that stage for creating a comfortable environment for the provision to take place where patient and families have some sense of connection to the health care providers taking part in the provision. 4.5.3 Creating a Comfortable Environment: “be compassionate, empathetic, and connect with the human” At the time of the provision, nurses spoke about many of the communicative practices they considered as they work to create an environment that was comfortable for patients and their families after the initial introductions. Many nurses spoke about the tasks required of them at a provision and how they balance these with connecting with the patient and their family. Three ways that nurses described going about creating a comfortable environment and connecting with the patient and family members included making time for conversation, completing final planning discussions, and sensing the type of communication needed that will allow the patient to feel more comfortable at the time of provision. 4.5.3.1 Making Time for Conversation. One way in which nurses voiced creating a comfortable environment for patients and families is through making time for conversation with the patient and family prior to the provision itself. One nurse voiced that before the provision, they arrive early, and rather than get to the required nursing tasks right away, in this nurses’ case inserting the intravenous, they will connect with the patient first. The nurse described, “I just kind of ask how they're doing and how they're doing that day and introduce myself to the people that are around them, so that, again, they can feel a bit more confident in somebody else being there that's just walked into their home in this very intimate surrounding” (P14 – RN). 133 Similarly, another nurse described the need to focus on the patient first rather than the tasks at hand. The nurse stated, “And so, there's a little bit of, you know, logistical stuff. You know, you need to get venous access, you need to draw up your medications, but then, of course, you also need to be compassionate, empathetic and connect with the human that you're dealing with… Because that's really the reason we're there. And so, you know, without being a robot and trying to, you know, do all of these tasky things, you need to relate with them” (P08 – NP). Likewise, one nurse shared that prior to a provision, while waiting for the physician to arrive, nurses spend time with family members and “chitchat for a bit” (P09 – RN). Other nurses also discussed the ways in which they engaged with patients prior to a provision ranging from reminiscing about patient’s lives, letting the patient guide the conversation, or asking patients directly about why they are pursuing MAiD. The following quotes exemplify these varied experiences: “I sat with him for an hour just to keep him company and we talked about his life. He said lots of lovely things and he was just reminiscing. He just needed someone to… to talk about why he felt his life was so great, but then also why he felt like life wasn’t worth living anymore for him” (P03 – RN). “I just kind of let them talk about whatever they want to talk about. Like, half the time, it’s about their lives and, like, their little passions. Like, especially if it’s at their house… like… oh, what’s this art work about or what’s this about? Because so many people have so many interesting hobbies that you can just tell by looking around, they just talk about that stuff” (P09 – RN). 134 “do you mind sharing with me why you are choosing MAiD? And she told me her life was terrible. She no longer can do the things she likes. She can’t get out of bed. She’s constantly in pain” (P20 – RN). By taking time prior to the provision to connect with the patient through conversation, nurses allow space for patients to feel comfortable at the provision. These examples show the importance of providing time for patients to open up and share their life stories as part of a meaningful experience in the MAiD process for many nurses as well as patients and families. 4.5.3.2 Final Planning. In addition to making time to talk about patients’ lives, nurses also make time to have conversations about what the patient and/or family want for the provision. While patients have had the day of provision described to them during the assessment phase, and sometimes the waiting period as well, both RNs and NPs voice that on the day of the provision, they spend time talking with patients and families to ensure that both patients and families know “exactly what this is going to look like” (P42 – NP). These conversations are important to have again to ensure that patient wishes for their final moments are heard and able to be enacted where possible. As well, nurses described the importance of having these conversations again as plans may not yet have been followed through on, or patients could have changed their mind as the provision date neared. One nurse explained why it was important for them to have patient’s final wishes honoured: “It's all about the patient and making sure that this is the enriched experience that they are wanting because they don't know they want an enriched experience, they just want to be dead. So, I'm trying to create an enriched experience around their death for them, as well as for the people they're leaving behind. So, I'm kind of orchestrating things but again, it's all about them. It's not about what my needs are and what my time factor is, it's about 135 creating this atmosphere and this experience that will be life-lasting for the families. So, you would never rush in there and just give them the bum's rush and say, "Okay. I've got to do this and I've got to get this over and done with." It's never like that. You have all the time in the world to create this and make it happen, so that's where I get my fulfillment from. I just feel honoured that I'm able to give somebody, with my limited set of skills… give somebody this experience that they're wanting. Does that make sense?” (P14 – RN). Both RNs and NPs voiced their commitment to ensuring that the processes are explained again and time is allowed for patients and families to ask questions about the process (P03 – RN). The following quotes are all examples of how nurses support patients with the details of the provision: “do you want us to stay with you after? Like, do you want to us to call the funeral home for you? Do you want us to give you alone time with the patient after they pass? You know, just kind of give them those options of what they want. And they can decide, basically from there and just basically asking them what they want to have. We make the situation as much about them as possible” (P09 – RN). “Okay, what do you want? Like, do you want alone time, because, like, some people are, like, too… almost too nice still ” (P09 – RN). “Have you thought about what you'd like the provision to look like? Like, are you okay where you are or do you want to be somewhere else, like, a chair, a bed? Like, whatever works for you... who you want there, did you have any special plans for music or anything like that” (P42 – NP). 136 “We'll usually say… we'll kind of ask and say, like, "Hey, we need to speak with the individual alone at some point. I'm not sure if it's better to do that now or later. Like, how is this day going for you and how do you want it to go?[...] and then, we ask, like, "Do you have any special… have you thought about what you'd like the provision to look like? Like, are you okay where you are or do you want to be somewhere else, like, a chair, a bed? Like, whatever works for you."... We talk about who you want there, did you have any special plans for music or anything like that. That has bitten us in the ass a couple of times that we've talked about that and so when I've asked for it very specifically, like, "Well, I think if you could find me Amazing Grace with bagpipes and no vocals."” (P42 – NP). One nurse described they stress to patients “It’s not about us, this is, like, this is all about you” (P09 – RN). Another nurse explained that by talking through these details, patients may have an easier time relaxing: “once people kind of know what to expect and, like, how it… how things work, then they’re kind of a little more relaxed” (P09 – RN). The same nurse explained they review how the patient wants the procedure to occur “I’ll go over it once again, like, where do you want this to occur, like, in your bed, in your chair” (P09 – RN). Another way that nurses create a comfortable environment for the provision is by refreshing patients and families about the details of the provision and answering any questions about the processes. As one NP stated, their role “is to make sure that everybody’s okay with, like, the procedure, that everybody is the least anxious. And the only way that I can alleviate that is to ask” (P04 – NP). Both RNs and NPs voiced their commitment to ensuring that the processes are first explained and then time is allowed for patients and families to ask questions about the process (P03 – RN). When speaking about meeting patients for the first time, nurses described 137 spending time answering questions from patients and families (P40 – RN; P55 – RN). This may be an important aspect of building the relationship with patients and families. For example, one nurse reported, “I would meet the patient and their family, answer any questions that they have about the process, talk a bit about who they were and what they would like to see during this day” (P51 – RN). Both NPs and RNs described the importance of using direct language to describe MAiD. One nurse highlighted the importance of “not beating around the bush” and “being very forthright with families” (P01 – NP), while another nurse stated “there’s no tiptoeing around [MAiD]” (P39 – RN). One nurse explained further that people “want you to shoot from the hip and be very, very clear on everything that’s going to happen” (P01 – NP). One of the nurses also clarified that this is a balance as they state “as nurses, we get a sense of who… you know, who's prepared to hear some of that and how you phrase some of what you're talking about” (P01 – NP). One nurse shared in detail: “I try and make it as easy as I can for each of the people that are there… when the physician talks to the patient just before the procedure, they have to be alone with them in the room to get a final consent. So, the family is usually out of the room and that time, I will talk to the family... I always do it on the direction of the physician. And so, I will tell the people in another room, I'll say, "The first medicine will just make them kind of drowsy. They'll probably go to sleep and that's the last thing they remember." And then, just a very brief description of going into a deeper coma and that's it but I don't think that's out of my scope of practice because I'm… I'm just giving the information that the doctor has asked me to give them” (P14 – RN). 4.5.3.3 Sensing Type of Communication. Another way nurses described how they create a comfortable environment for patients, particularly to allow patients to open up, or 138 address patient fears, is to consider what type of communication would be helpful for the patient in the moment. For example, two nurses spoke about using humour or “teasing” in patient interactions. One nurse described this type of connection as helpful in allowing the patient to open up about their life prior to death: “you can still have these conversations and, you know, a little bit of teasing or kibitzing which we did with this lady because she, you know, talked about her life and her… she had four sisters and how they loved going to dances and… so she was kind of talking about that prior to her death… which was kind of neat” (P01 – NP). Another NP described using humour to respond to a patient’s question that hinted at the patient’s own worry about the provision. This NP described a patient asking questions about what it will mean for them when they are “at the pearly gates” (P18 – NP). At this moment in time when the patient is worried about judgement, the nurse made a careful choice to respond with humour: “And I said to her as comically as I could, I said… you? What about me? I said, what are they going to say… what are they going to say when I get there? And she laughed and she said… ya, you’re right. And she goes… you know what, I’ll save a spot for you beside me” (P18 – NP). In this circumstance, the nurse felt using humour was an appropriate response for this patient to ease their worries. One nurse shared a meaningful interaction with a physician and a patient and their families where the physician provided time for the patient to feel comfortable to talk about their life: “This physician that I was with... she had told me ahead of time that this woman was… had been a concentration camp survivor and that she didn't like to talk about her feelings 139 very much because, again, they get to know them quite well when they're doing their assessments. And she said, "So, don't be surprised if she doesn't say very much." And I said, "Okay." So, I was there and her husband who was also Eastern European, he was laying on the bed beside her. Her son and daughter-in-law were sitting at the end of the bed. And this doctor, who just had such great insight, she said to her… she was holding her hand and looking in her eyes and saying, "Are you ready for me to start." And this woman said, "Yes, I'm ready." But the doctor didn't start, she just waited. She just held her hand, looked in her eyes, stroked her hand and waited and about 15 minutes later, this woman opened up and started talking about how wonderful her life had been with her family” (P14 – RN). This intuitive sense the physician had to sense what the patient needed despite the patient saying they were ready, created an environment where the patient felt comfortable to share with her family about her life story moments prior to her death. These examples show the importance of sensing what the patient needs and potentially providing extra time for patients to open up and share their life stories as part of a meaningful experience in the MAiD process for many nurses as well as patients and families. Nurses also report reading the environment as an important aspect of building rapport with patients and families. For example, one nurse described when meeting a patient for the first time, a patient may prefer the nurse to complete their task and “get out of here,” or the patient may prefer to have an hour-long conversation (P39 – RN). Nurses remain vague when describing what it means to “read the environment.” One nurse explained that “being very sensitive and intuitive about what kind of presence is wanted and what might be needed” might play a role in building rapport (P29 – RN). 140 Other nurses described: “...try to read the environment a little bit… And I go kind of, like, I walk around outside for a little bit. I say… okay, like, who’s all here, is this going to be really crowded… And then I kind of like, go in and like, kind of see, like, just for safety kind of reasons first, because there have… have been, like, maybe one situation. I can remember touching, maybe, like, one or two situations where there’s been people kind of not in agreement with some situations” (P09 – RN). “then you just come in, you kind of read the situation and then ya… then just kind of… like, people are so welcoming and so sweet. It’s amazing. You just kind of chat with them and introduce… introduce myself. And then, like, whether we just talk about… like, just talk about anything they want to bring up” (P09 – RN). Overall, it appears reading the environment may involve using nurses’ intuitive sense to understand where the patient is at emotionally, and what their needs and preferences are in terms of support from the nurse. While nurses did not articulate how they do this, one nurse described the importance of seeing patients as humans first, stating “...you're dealing with a human in front of you. Take the time, treat them like a human being, put them at the centre of everything you're doing” (P08 – NP). By putting the patient at the centre of what the nurse is doing, this may help to support nurses to read the environment and understand what the patient may need throughout the interaction. 4.5.3.3 IV Nurses Strategies to Create a Good Environment. Another aspect that nurses, more often RNs, must plan for is the insertion of IVs. One nurse described in detail how they introduce themselves as the IV nurse, the importance of having an open conversation, and their role in planning for the IV sites. 141 “I think… I think for the big thing is just having a conversation with the patient, right? For some patients… some nurses, there could be an elephant in the room, but I don’t feel that that’s the way for our MAiD nurses... I always identify who I am and introduce myself, tell them I am the nurse here to start the IVs because I understand they are going to be partaking in the MAiD” (P20 – RN). The same nurse also spent time ensuring a patient-centred provision by considering where to insert the IV’s so that positionally, families would be able to be close with the patient, without the medication administration being in the way. “… I asked what his plan was, as far as it was going to be in a chair or in a bed. He was going to have his family at his bedside because I always start the two IVs on one side, as opposed to one on each side so that the family can have one side and the physician can have the other side. That’s how I do it” (P20 – RN). “And I always say… you know, the doctor requires two sites. I would like to know where you’re planning on being when you… when you do this. Did you have a chair or bed and what is your plan? Is there going to family here? Are you going to be by yourself? Is there a side that your family is going to be on that you would prefer? And then I say… if it’s okay with you, I’d like to start your IVs on the other side so your family is uninterrupted on that side and they can be with you without anything in your arm or hand” (P20 – RN). While the insertion of the IV is not necessarily difficult, one nurse described it being a difficult task because of the suffering it can cause to patients. This nurse shared a comment they make to patients as they insert the necessary intravenous lines for the provision: “I always say, you know, "This is the worst part of my job because I have to give you pain again when you've 142 had all this pain and now I come along and stick you two more times"” (P40 – RN). Similarly, to reduce patient suffering, another nurse discussed their role in advocating against the insertion of an IV if the patient had an alternative option. The nurse shared, “So, I had a patient that was my chemo patient for over ten years when I worked straight chemo. And she had had her MAiD assessment, had her MAiD date. I was going to be away out of the country on vacation, so I was not able to be there to access her port. So, I made sure that her port was going to be accessed and that there was a plan for IV access that everybody knew about before I went away” (P20 – RN). In addition to considering positioning, nurses also communicate with patients to ensure they have the support they need with the insertion of the IVs with two nurses describing asking if the patient wants support in the room while the IVs are inserted or if they would prefer to be alone. “And then, we'll usually ask the individual and the family, like, "At some point the nurse needs to start your IVs. Do you want, like, moral support people for that or do you not want people staring at you while that happens? Like, what would be best for you?", kind of thing. So, whatever will make their… whatever will make them most comfortable, we usually just go with that” (P42 – NP). Finally, the nurse who inserts the IV is also typically the ‘recorder’ for the provision, meaning they document the procedure as it is happening. In order to prepare the patient and family for this, one nurse described communicating this clearly to the patient and family: “Then I start recording, I guess, basically. I put my IVs in… two IVs I usually do on either arm... and then I’ll start recording, like, her medications basically. And I’ll tell the family, like… I’m, like, I’m actually just looking at my watch to write down times. I’m 143 not trying to be rude or anything like that... So, you know… like, what I’m doing. And then, so I’m, like, sort of writing times down and, like… and then I know now, like, she’s in… like, I kind of know which medications are… what she’s, like, giving in order. So, I just, like, write down the times of each of those and what she’s doing and what the patient’s doing” (P09 – RN). Overall, in relation to planning for IV care, nurses spoke about ensuring IV access prior to the provision whether that meant planning for port access, assessing veins prior to the provision, or checking in regarding plans for positioning during the provision to ensure that the IVs could be established in a way that disrupts the patient’s plan as much as possible. 4.5.4 Providing Reassurance and Validation Nurses described many ways in which they provided reassurance and validation to patients at the time of provision. This includes both reassuring and validating comments, physical touch, and a spatial awareness of being in the room with patients and families. 4.5.4.1 Reassuring and Validating Comments (Words). A few nurses spoke about specifics they stated verbally on the day of a provision. Firstly, comments that nurses make to reassure patients in the moment will be described. While one nurse couldn’t remember exactly what they said to support the patient, they stated “if I said anything... it would've been a reassuring comment” (P06 – RN). Another nurse gave a specific example of a reassuring comment they shared with a patient. This nurse described a conversation with the patient and MAiD provider where the patient was able to share “about what he'd done through his life in his career and all the traveling that he'd done” and the nurse validated the patient and their decision to pursue MAiD: “"You've had a really good life. We're going to give you a good death."” (P14 144 – RN). Not only was that comment validating to the patient, but the doctor also shared with the nurse how they appreciated the comment as well. Secondly, nurses also spoke about the reassuring comments they make to support family members. For example, one nurse explained that they make sure that family members are supported on the day of the provision, speaking with each family member individually, checking in with them throughout the provision, and allowing them to step in and out of the room as needed. The same nurse explained there are “so many little things” that can support the family on the day of the provision and reinforced checking in with the family “Just ask. Talk… talk… don’t… don’t be afraid to talk” (P03 – RN). The nurse also stated, “And if you see a family member that looks like they’re distressed, then go and talk to them. Don’t feel like you can’t say things during the assisted death. I have taken a lot of family members out and then I’ve stayed with them outside and then I’ve brought them back in if they want to. So, don’t feel like it needs to be this somber completely silent thing” (P03 – RN). One comment that another nurse described that may help to validate families during a provision is to acknowledge how beneficial the families support is during the provision, or sharing a comment or memory that they know about the patient. For example: “"We think it's really brave that you're all here to support your dad with this", or just recalling something that the patient had said to us in the assessments because sometimes people don't really know how to act or what to do... So, one of us will usually say something and then sometimes the families latch onto that and just start chatting about, like, memories and the things that were important to them and that's really nice and sometimes they don't because they would just prefer to be silent, which is also okay, but 145 usually try and say something just to let them know that they can if they want to. They don't have to just be awkwardly silenced... And then, the physician will often say, like, "I'm going to do all the medications and I'll listen for heart sounds when we're done and then I'll pronounce the patient"” (P42 – NP). Finally, one nurse described how they try to reassure family members that appear to be struggling with the provision. While the nurse voiced some family members at this specific provision were supportive of the patients choice, they could see that one family member was not. They stated, “One of them sat and was just very cold and closed and I could see she was struggling... But she didn’t want to be helped at that moment. She didn’t want support at that moment. She just wanted to be left alone in the corner of the room watching the whole thing... The rest of the family… again, I talked to them and if they had any questions, they were all fine. I went to the patient to start the IV and then my role was to do the documenting again” (P52 – RN). Another nurse indicated that expressing gratitude towards family members for being present with the family and the benefit this has to the patient, was one way this nurse aimed to reassure family members in situations where they might not be in full support of their loved one’s decision: “And then, I thank them for supporting the person because I know that it's sort of difficult for… some of the family, it's very difficult for them because they might not believe in what they… their loved one is doing and they also are… they don't want to lose their loved one... Understandably so. So, some of them are ambivalent about this procedure taking place. So, I take a moment to thank them for being there to support their loved one and how much better it will be for their loved one knowing that they're standing at their 146 side and allowing them to make this decision on their own. And then, I also tell the families that this is such an honour for me to be there to witness this and it's an honour for me to be able to validate that somebody is making this decision and it's their life to do this because we get… a lot of times we say… they're all over us and they say, "Thank you, thank you, thank you. You're angels. Thank you, thank you." And you're welcome just doesn't seem to be as intimate a response as required. So, we just kind of have a standard response that we say, "It's an honour to be here with you"” (P14 – RN). “Always when I am starting IVs, patients start talking about how they’re so glad they get to do this... It opens up to a bigger conversation and we talk about why and they say… you know, pain, incurable disease. They… you know, they don’t want to suffer anymore. It’s their life, you know, those kinds of conversations. And sometimes, family members will come in and you know, they’re always… oh, you’re… I’m so grateful that you’re willing to do this and… which is very nice. But I just think it’s truly a part of holistic care. We can’t say we’re doing holistic care if we deny patients these rights” (P20 – RN). 4.5.4.2 Physical Touch. Nurses also discussed physical aspects of communication with patients on the day of provision primarily either physical presence as important or physical touch. For example, one nurse states “sometimes I’ll just squeeze their hand” when they aren’t sure what to say (P34 – RN). That same nurse was talking about physical presence as an important relational aspect of nursing, so much so that they describe a colleague who was a conscientious objector who stayed with a patient and held their hand throughout a provision as the patient would have otherwise been alone which highlights the importance that some nurses put on physical presence and touch in the nursing role. Another nurse stated that as a presence in a provision they will be present in the room and depending on the context they may also hold the 147 patient’s hand (P52 – RN). One nurse voiced that depending on who is in the room, they may take a more tactile role while also comforting the patient with words. “I'm much more… like, I take a role of being soothing, I'm probably more tactile, I probably, you know, touch them and say, you know, "Off you go. This drug is going to make you really sleepy” (P40 – RN). 4.5.4.3 Spatial Awareness (Space). While not all nurses described the spatial aspects of communication that they consider throughout a MAiD provision, the nurses that did discuss this spoke about a few similar strategies. Nurses reported making their presence in the small room, and the family presence in the room larger. For example, one nurse stated: “If there is a great big family around, I make myself really small because I want everybody to have their place. You know? And we talk about that... I say, "Now, everybody kind of decide and it might just be like a potluck dinner when everybody brings the right thing. You're all going to end up in the place you need to be. Somebody's going to be at the head of the bed, somebody's going to be holding this hand, somebody's going to be touching the feet." Everybody kind of finds their place and if that's going on, I'm really tiny. I'm just kind of somewhere in between the doctor and the IV being quiet because it's not my circus” (P40 – RN). The next two quotes by one nurse highlighted how they try to ensure family is prominent in the room, while making the nursing or more medical presence small: “I… we always make a point of inviting the family to sit as close as they want to, to their person. Right?” (P01 – NP) “I thought it was much better to go into a private space and, you know, prepare medication and then give the family the… all the time in the world they want and then, you 148 know, pop back in and just say, "You know what? We're ready anytime you are. You take your time and then have a family member come to us."” (P01 – NP) 4.5.5 Ensuring Final Consent and Patient Readiness: “let’s get this show on the road” When it comes to gaining final consent at the provision, some nurses spoke about their communicative practices in gaining the patient’s final consent. Other nurses spoke about the conversations they had with patients that indicated how ready the patients were for the provision to happen. 4.5.5.1 Final Consent. NPs explained the importance of using direct language when gaining final consent for MAiD. For example, one NP shared the language they use to gain final consent from a patient before administering the medications at provision: “Do you understand the different between palliative care and MAiD? I can relieve all of your symptoms as… you know, I can… I can treat your pain, I can treat your shortness of breath, I can treat your agitation, I can help you die peacefully. Or I am going to stick a needle in your arm that is going to put you to sleep and then I’m going to give you breathing… or I’m going to give you medication that is going to stop your breathing and you are going to die ... Do you know the difference between that? And I have to say it like that because that’s what it is. And every single family member that knows… that hears me say that, and every single person that’s asked for MAiD says that are unequivocally holding out their arm and saying… can we move on from the formality of this? They’ve already… you guys have already asked me those questions. I’ve already done the capacity assessment. Like, just give me the medications. So, it… it is, like, so clear” (P18 – NP). 149 As well, another NP discussed how they work to try to reduce the burden of a decision on a patient and ensure that the patient does not feel pressured to continue with the provision at the time of final consent if they do not want to. In this case, the nurse stated: “Hey, if… like, if you change your mind, we can just leave. You don't lose your approval by changing your mind."... And so, like, you could just call us tomorrow or never and that would be fine. Like, if you have 20 family members in the other room and you had an excellent day and you're feeling like this is not your day but you feel really awkward telling your family, we can say that we can't go ahead for medical reasons” (P42 – NP). The same nurse also voiced that they ensure the patient consents both alone and in front of their family if present so that the family can witness the consent. 4.5.5.2 Patient Readiness. One aspect that many nurses voiced about their conversations with patients on the day of the provision was how patients would often voice how ready they were for the provision to occur. The next few excerpts show how patients voiced their readiness for provision: “So, we met this gentleman and he was in his early 90s and his whole family… well, his five child… adult children were there that were all in their 70s… early… late 60s, early 70s, just an incredible family. And he was… after we went in and, you know, kind of chatted and the physician went through everything, you know, one more time with him and he said… he was, like, "Let's get this show on the road. You know, enough."” (P01 – NP). “You know, the strongest feeling for me is how committed these patients are to this. They all seem so grateful when we come and they all say… you know, we try to get consent 150 from them and all they'll say is, "Yes, I'm ready."... You know, I've been waiting for this and, you know, this is my day”” (P30 – NP). “They had nobody here that they were close to and so when I got there, the husband and the wife were there and he said, "Let's get this done with. Let's just get this done with."” (P14 – RN). “by the time I'm involved with it, they're feeling very good about their decision and very strong about their decision. I've never seen anybody waiver… Even though the doctor gives them every opportunity to change their mind and we would… if that happened, we would just back away and say, "No, that's fine." Some of them have postponed it a couple of times” (P14 – RN). Some nurses also shared that having the experience where patients are so ready for the provision to happen helps support the nurse to feel positively towards their role in MAiD: “that’s the only part that makes this doable is that they are… they’re clear that they want it. They are begging you for it. They are… the family’s ecstatic and they’re hugging you and you… you feel like this hero that have gone in there. But then, you walk out and you’re like… holy smokes, so I did just end someone’s life and… but they were dying and all that kind of stuff” (P18 – NP). “But, you know, meeting the client earlier that day, she was… ya, she was funny. There was a lot of people around her. She had her spouse and she had some of the local hospice volunteers and maybe some friends. There's probably some… with such a small town, it's probably one in the same... And, you know, they kept sort of, like, "So, how do you feel? You know, anything you want to say." And she's, like, "Nope. Just can we get on with this." (Laughs)... They were really, like, holding space for it to be a very significant 151 moment for her but she was just… I mean, she said… what did she say?... I asked her how she's feeling about it and I said, "Okay. Well, I'll come back later with the doctor." And she said, "And then, I get to go over the rainbow", or something like that (laughs)... So, she was just so looking forward to it that it really made it very easy for me to, like, just not worry about it because, you know, valuing autonomy as I do, it's sort of, like, you know what, it doesn't matter, this is clearly… she's excited about it (laughs)... She has no reservations, so why should I?” (P39 – RN). “But to me, these are most peaceful deaths. And I hear the patient fully saying… this is what I want. I’m ready. There’s no… sometimes there’s ambivalence. But at the same time, they… they’re strong… like, they’re decision’s strong enough that I’m not crying for them because they’re ready” (P55 – RN). 4.5.6 Pronouncing Death During the provision and immediately after, surrounding the pronouncement of a patients’ death, nurses use both verbal and non-verbal communication strategies to care for families. In some cases this may be simply being physically present, providing some form of touch, or verbally expressing something either during the provision or immediately after pronouncing to express condolences. Often times nurses described either using reassuring words, physical touch, and presence as ways to communicate caring during or immediately after a provision. Specific to communicating a pronouncement, one NP shared the importance of using direct and specific language to pronounce death. The nurse stated: “she'll pronounce and say, like, you know, "Your… like, he's died." We're always very careful to say died and not just passed or is gone, we have to be clear about it” (P42 – NP). Another NP described how they 152 manage pronouncing a patient’s death after MAiD provision focusing more on the challenging moments surrounding the pronouncement with less of a focus on direct language. The nurse voiced, “We have to be present and we have to pronounce them, so you know… after I’ve given someone the medications and we’re sort of waiting for them… their heart to stop beating, that’s sort of a… tough situation. Sometimes I… step out and just give them time... If their heart stops pretty quickly... it’s sort of easier because people are waiting for that moment, you know. Someone hasn’t died until their heart stops beating... And so, they sort of are… have the pent-up anguish and grief that… that all comes out just, you know, when I say… okay… like, you know, they’re gone. So, I think that vigil is… is hard. It’s hard for families and I don’t think patients want to think of their families as, you know, hovering around the bedside, you know, staring… waiting for the moment” (P25 – NP). While RNs are not able to pronounce a patient’s death in the context of MAiD, two RNs spoke about the physical and verbal communicative techniques they use in the moments surrounding a pronouncement. One nurse explained they reassured a patient’s friend using physical touch and verbal reassurance: “I can't remember what he said but I think she was a little bit unsure if she had gone or not or just maybe didn't quite know how to feel but I… after a few minutes I stepped up to the other side of the bed, because I did know this patient and his friend quite well, and I sort of just started rubbing her arm and talking to her… both of them as well just gently and just reassuring her… And then, I stepped away again and the doctor stepped forward and listened to the heart and sort of pronounced her” (P06 – RN). 153 Another nurse described similar strategies stating as they support family members through the bereavement using both verbal and physical communication strategies: “I've had times where I've been far more concerned with the family members than with the patient themselves, supporting them and helping them through it and afterwards for sure… kind of the sharing of a few words or a couple of sentiments. I often will say, "I'm very sorry for your loss." And I kind of take the cue if somebody is okay to be touched… You know, and hugged… Or to put a hand on their shoulder or their arm or hold their hand. Whatever, I just take their cue, if they're that kind of a… looking like they're that kind of person and I would say nine times out of 10 they are… But there's always people that aren't, definitely” (P29 – RN). Whether it is the NP pronouncing a patients’ death, or the RN supporting families surrounding the pronouncement, nurses use both verbal and physical communicative techniques to support the family after a patients’ death. 4.5.8 Summary Nurses are careful in their communication with patients on the day of a provision to ensure that patient-centred care is placed at the forefront of their care. Nurses described how they prioritize patient-centred care through communication when considering ways of saying goodbye, how they build or maintain relationships with patients and families on the day of the provision, and how they engage with patients to create a comfortable environment for the provision. During the moments surrounding the provision some nurses described their communicative practices that they used to reassure and validate patient choices. Finally, nurses described the unique aspects of how patients voice their readiness for the process to begin, and 154 how nurses communicate both verbally, and non-verbally in the moments surrounding the pronouncement of a patient’s death. 4.6 Bereavement After a patient death occurs, the bereavement period begins and nurses’ attention shifts to focus solely on the family and their needs. In order to differentiate between the phases of care for the purpose of this thesis, the bereavement period will be described as the period of time after the patient’s death has been pronounced, even if the nurse is still present at the provision. In this way, bereavement care could occur in interactions when leaving the family members to spend a final few moments with their loved one, outside of the provision room, or could occur days subsequent to the provision. When communicating with family members after a provision and patients’ death, nurses voiced three main components of care. These areas include expressions of gratitude, communication about what comes next after a patient’s death, and bereavement care. 4.6.1 Expressions of Gratitude Although expressions of gratitude may occur at various stages of the MAiD process, this section will describe expressions of gratitude solely after a patient’s death. Nurses in the study voiced both expressing gratitude towards family members for being involved in a patient’s care, as well as more frequently, receiving expressions of gratitude from family members for being a part of patient care. 4.6.1.1 Nurse Expressions of Gratitude. Two nurses voiced specific examples of how they expressed gratitude towards family members. In both cases, nurses appear to be sharing their gratitude towards the families for being a support for the patient as they chose MAiD. For example, one nurse stated “we usually thank the people for being present for whoever had help to die because that's pretty important to them” (P42 – NP). The other nurse expressed their 155 gratitude towards family members for being involved in their loved ones’ care and further shared how being present with the patient was an act of love: “You have given your loved one an incredible gift today by being present with them, by supporting them, and this is an incredible show of love, you know, that you have stood by them in their courage in making this decision and what an incredible gift you've given them” (P01 – NP). 4.6.1.2 Family Expressions of Gratitude. More frequently voiced in the interviews, nurses shared how family members expressed their gratitude towards them, whether it is through physical touch (ex. hugs) (P01 – NP), or verbally saying thank you (P01 – NP; P18 – NP). Many nurses found that families expressed gratitude towards them as families described their positive feelings towards the provision and how it supported their loved ones wishes. For example: “The responses from the family members. You know, I can't believe how, you know, peaceful that was. They were so comfortable, you were so kind, this is just the way they would've wanted to die” (P30 – NP). “and most people are, you know, really grateful and really calm at the end… like, family members after someone’s passed. They’re… they thank everyone that’s been part of the… the procedure and… and I think they feel really at peace with the decision that their… that their loved one has made” (P25 – NP). One nurse voiced that even when family members may not explicitly agree with the patient’s decision to have MAiD, it is common that after the provision has happened, family members might say “I’m happy that their suffering’s over… and then [it] was pretty peaceful” (P03 – RN). Similarly, another nurse continued on to describe that when they hear families describe the 156 experience as “peaceful”, it gave the nurse a “sense of peace” about the procedure as well (P34 – RN). Overall, expressions of gratitude either directed towards family members, or nurses appear to be a way that nurses and families share their gratitude towards each other for supporting the patient in choosing what was best for them. Through these expressions of gratitude, it appears that nurses find a sense of peace in the role they play within the MAiD provision. 4.6.2 Communication About What Comes Next After a patient’s death, nurses communicate with family members in different ways with a common focus being family-centred care. After the provision has occurred, a patient’s death has been pronounced, and nurses have expressed their condolences as described in the provision section, nurses communicate with families about next steps. The most common topics that nurses spoke about in these moments included providing the family the option for time alone with the patient, supporting the family with funeral home arrangements, and finally, how nurses communicate about leaving the provision. Firstly, nurses often provide families with the option for alone time with the patient, the amount of time dependent on family needs. “when the person has died, the doctor pronounces... and then I sit with them as long as the family wants me to. Most of the time… or some of the time, they say, "You know, we're good." You know, I'll ask, "Do you want me to stay with you for longer?" "No, no. We'd like to spend some time with mother." Or something like that” (P14 – RN). “So, right at the time that we declare death, we offer our condolences, of course, but not… we do not stay in the room very long... We leave fairly quickly. We just are right 157 outside the door completing our documentation and we then allow… you know, give them about 15 or 20 minutes before I go back in to say, "Is there anything you need? You're not rushed, please take your time." And I found that most people are already packing up within that 15 or 20 minutes... They don't stay around very long at all” (P51 – RN). After giving the family the option of alone time with the patient, nurses check in with families about the next steps, stating “We're just going to give you some time and then we'll come back before we leave and we'll come and take out those IVs” (P42 – NP), and ask whether families require support with next steps. For example, once nurse stated they, “hang out with the family and kind of give them some alone time if they need it and… or whatever they need and ya… And then, if they want us to wait around with the family for the funeral home, we do. If not, then we leave” (P09 – RN). Secondly, nurses discussed whether they would either explain to the families about next steps with the funeral home or if they would stay to support families while waiting for the coroner or funeral home. One nurse voiced “Some people are too upset or they feel weird or they just don't want to call the funeral home, so if that's the case, we're happy to call” (P42 – NP). Another nurse described their role in talking to the funeral home and calling the coroner: “So, I finish what I’m doing, you know. You’re there for a few minutes, you’re extending your condolences, you’re just talking about, you know, what’s going to happen after and the funeral home is going to come and I’m going to talk to the… the coroner” (P18 – NP). One nurse also voiced that some nurses stay with the patient until the funeral home comes as part of their practice: 158 “You know, they’ve… the… one of the palliative care NPs is… you know, she’ll say to me… M****, go. I’m going to stay behind and I’m going to wait for the funeral home to get here. I’m just going to help the family go through this” (P18 – NP). While one NP understands why other providers might have to leave, they voice that they would stay with the family to provide “after care” and talk to families. For example, this nurse may ask the family, “How are… are they okay? How did they feel about this? Did it go how they thought it would? Now the coroner is going to call. Are you feeling okay about that?” (P02 – NP). This nurse feels that by staying with the family and walking them through these next steps, they can provide better holistic patient/family centred care. One nurse, who described staying with the family while the funeral home came to retrieve the patients’ body, described how they support the family at this time to reduce the burden on the family of witnessing the process of removing the body: “So, I just sort of said, "Why don't we go outside and, you know, take a nice deep breath of fresh air while they do this."... And, you know, so, it was just sort of letting… guiding them through that part of it but it wasn't emotionally… they had each other to support them as well and they knew each other so well, so they seemed like they were coping with each other's grief really well” (P19 – RN). Finally, nurses also shared important communicative practices of when they are leaving a provision. One nurse described a specific scenario where they were leaving the patient’s home after a provision that led them to believe there was some sort of “ceremony” required when leaving a provision. This nurse described that because MAiD was such a new practice, they were not yet comfortable to leave the provision with a quick goodbye to the family. The nurse described: 159 “"Okay. We're leaving now." ... And, you know, the family goes, "Thank you." And you're going, "Really? Are you sure?" … you know, it became quite clear that you almost needed some sort of ceremony around it. Like, you felt kind of weird because it's not like there was any preamble or any post anything. It was just… you know, "Okay, we're going to leave now" and then the funeral home is going to come which is totally the way I'm sure it used to be, you know, people died at home all the time… But, you know, because this was such a new thing. You know? I just… I still worry about the families having gone through this, you know, what their reaction is short-term and, of course, you know, it's unique. Right?” (P13 – NP). While the nurse did not voice what type of ceremony they would like to implement into this leaving process, it is clear that the nurse noted a gap in their current communicative practices that if developed may help to support nurses and families in the immediate bereavement period as nurses leave a provision. 4.6.3 Bereavement Care After death, bereavement care is completed differently in various areas. Bereavement care may be provided by the MAiD team (P06 – RN; P42 – NP; P55 – RN), or by home care or palliative nurses (P12 – RN; P55 – RN). When the MAiD team is providing the bereavement support, it could be the physicians, NPs, RNs, or social workers that follow up. One NP stated that while it is not part of the publicly funded MAiD program, as part of their nursing practice, they call the family a few days to one week after the provision for bereavement support (P01 – NP). In one case, the MAiD program has two week, six-week and six-month follow ups for bereavement with a social worker (P42 – NP). In another case, one of the nurses on the MAiD team voiced they follow up with the patient’s family a week after the patient’s death for 160 bereavement support (P41 – RN). Another nurse discussed how their program does not have a specific bereavement package with information of resources that other programs do, but this RN does check in with families four weeks after a provision and if they are struggling, they will recommend who the family could reach out to for further bereavement support (P51 – RN). Bereavement care being completed by home care or palliative nurses was voiced by two separate nurses as a complex issue given that these nurses are not always involved in the MAiD process or provision itself which could lead to a disconnect for family support. (P12 – RN; P55 – RN). One home care nurse shared that while they did feel disconnected from the provision, a family member did reach out after the patient’s death to talk through the provision and in that way the nurse was able to provide bereavement care (P12 – RN). Whether it is the MAiD team or the home care nurses providing the bereavement care, the details of specific communicative practices were not discussed in the interviews. 4.6.4 Summary In the bereavement period, nurses spoke about their communicative practices both in the immediate period after patient death as well as their individual practices for follow up in the days or weeks after a provision. Nurses shared that both family members and nurses share gratitude towards each other for their involvement in supporting the patient through the provision. Additionally, despite conversations about planning for the after-death period and the funeral home and coroner involvement, nurses still continue to talk the family through these steps and in some cases stay with the family throughout these processes as additional support. Finally, the last section on bereavement follow up highlights the uniqueness of bereavement programs across Canada. 4.7 Recommendations 161 Throughout the interviews, nurses provided insight into recommendations that would help improve how nurses communicate about MAiD with patients and their families. Various strategies were presented by nurses including increasing support and education for nurses to have conversations about MAiD, and including conversations about care options early. 4.7.1 Support and Education for Nurses Support and education for nurses about MAiD was recommended as a way to improve communicative practices by two different nurses. One nurse highlighted that not all nurses are “educated well enough to really explain how the whole process works and know who to reach out to” (P16 – RN). For that reason, when asked what could help nurses talk about MAiD, this nurse suggested support with clarifying the nurse’s role, having clear guidelines, and the ability to connect with MAiD providers: “helping us to see what our role is and being able to just explain the process very clearly to a family member or a client that is asking... So, just really clear guidelines is just, you know, the best thing we can do and, you know, just a really open-door policy with the physicians that are providing MAiD, so that we are able to phone and have some communication with them” (P16 – RN). Similarly, another nurse had a specific recommendation to increase support for nurses in how to have conversations about MAiD. While they recommended that nurses have access to a “one-page handout” that describes what to do when someone asks you about MAiD, the nurse did not describe what specific information would be helpful to have on that handout. The nurse stated, “I think, you know, a one-page… one-page thing handout for staff, if someone asks you about MAiD, this is what you need to you, almost like a mini poster... And then post it or 162 have it on those patients’ charts that are palliative would really help staff, almost like a check list” (P43 – RN). The same nurse also had specific recommendations for nurses to have these conversations. They recommended nurses: “stay calm, don’t run from those questions. If you don’t know what to do, say… no, but let me find out and get back to you… and then do it... So, be open, be kind and… this is… like, to me, it’s a desperate… it’s a desperate point in somebody’s life. Like, they understand the end is coming near and they’re desperate for factual information and they’re… they’re desperate to make sure that someone will follow through” (P43 – RN). In addition to having clear guidelines about what nurses can and cannot discuss when it comes to MAiD, formal education was also voiced by nurses as something that would benefit them as they navigate these conversations. One nurse particularly expressed that outside of initial nursing training, taking further education in a specialized field is helpful for learning. For example, this nurse explained that training outside of nursing school can be absorbed and implemented easier than when in nursing school: “I took the [hospice] psychosocial care of the dying and bereaved... And I do recommend that to my colleagues... it felt like some of it was a repeat from nursing school… But your energy is so different in nursing school. Like, "Am I going to pass? Am I going to get that assignment done?... And you don't, like, really, like, absorb it the same way... I felt like that was a really important course to do, so I do recommend that” (P39 – RN). Another nurse indicated that receiving more frequent education from a specialized team within the work environment would be helpful for nurses, rather than having to complete the research on their own. The nurse stated: 163 “the palliative team never had a formal instruction or any sort of meeting pertaining to MAiD or how to handle these questions or the accurate information, I think, that as a team of palliative nurses, that would have been beneficial. And even to this day, it would be beneficial. I think that we did have the MAiD team come talk to palliative, maybe once a year and a half ago… And again, those… like, not everybody was there, so there is a big knowledge gap within that team, as it goes probably in all areas of nursing where, you know, we’re just expected to gather the information ourselves from either out college or from our… you know, from the websites and this sort of thing” (P55 – RN). 4.7.2 Including Conversations about Care Options Early In addition to increased support and education for nurses, other nurses also expressed that communicative practices of MAiD could be improved if all health care professionals were encouraged to have conversations about all available care options early in a patient’s illness trajectory to allow patients “some time to talk about it with their family just like with any other palliative conversation” (P03 – RN). Similarly, another nurse explained that patients had requested putting information about MAiD on a palliative care admission checklist to ensure all patients are aware of it as an option. This nurse stated that patients had requested “"Why don't you put it on the palliative care admission checklist? Like, hey, just so you know, some people are eligible for assisted dying. We're happy to tell you about it, if you want to know."” (P42 – NP). The nurse explained that the idea was not well-received by their particular palliative care team stating that the idea “went over not so great with the palliative care group” (P42 – NP). 4.7.3 Implementing a Way to Receive Feedback 164 Nurses also spoke about feedback as a way to improve communicative practices related to MAiD. One nurse recommended that feedback would be helpful to receive from family members about their experience in order to learn for the future. One nurse stated, “There's no process in place for me or for the doctor to know that we did a good job... And I've been asking… For it ever since I started... Like, is there some way that you can send out something 10 days, two weeks later… Saying, "How was the experience? What could've been better? What went really well? How did you find the information from the doctor? Was the nurse helpful? Did you understand the process?" It would be so easy... Right?” (P40 – RN). If nurses were able to receive feedback from the family about what went well or what didn’t go well, nurses might be given the opportunity to learn about certain aspects of communication they could improve upon to improve the patient/family experience. In addition to the desire to receive feedback from family members, another nurse described the need for nurses to receive feedback from team members in order to develop competence. This nurse described a situation where a community nurse was providing incorrect information to a patient and their family about what was required to prepare for the MAiD provision. The nurse interviewed stated that a community nurse had “told [the patient] that they needed to wear a diaper and she documented this as well” (P55 – RN). While the MAiD team was able to correct the misinformation for the patient and their family by stating “there’s no… you’re not at risk of losing control of your bowel or bladder and in all of the provisions that I’ve been at, that’s never happened. So, that’s nothing to be concerned about.” (P55 – RN), there was no formal process in place for the MAiD team to provide the feedback to the nurse regarding any misinformation they had. If feedback mechanisms were put into place, perhaps there would be a 165 process for nurses to learn from other team members about the details of MAiD so that there are fewer instances of misinformation. 4.7.4 Summary In this section, it appears the primary recommendations nurses have when it comes to supporting nurses who feel less comfortable with the topic are to provide education to nurses to ensure they are aware of what they can and cannot say about MAiD, and so they have the correct information, as well as encourage nurses and other health care professionals to have conversations about patient options for care early so that patients have time to consider their options. Finally, nurses also recommend the importance of receiving feedback from patients and family members in order to continue to improve upon the care provided. 4.8 Chapter Summary The findings in this chapter were presented in a format that mirrors the phases a patient goes through along the MAiD journey. These phases begin with the contemplation period, the assessment, the waiting period, the provision, and finally the bereavement. Throughout these phases, nurses spoke about their communicative practices to engage with patients and their families in meaningful ways. In the contemplative phase, nurses spoke about the ways in which they have the initial conversations about MAiD in addition to some discussion about communicating when MAiD is not legal or when patients are ineligible for MAiD. In the assessment phase, NPs spoke about the communicative practices they use to have an open conversation allowing them to complete the assessment while also providing the patient information about the provision itself. In the waiting period, nurses spoke about how they communicate with patients who have been approved for MAiD but are still awaiting their provision date. These conversations included how nurses listen to patient stories, check in with 166 patients regularly, and continue conversations with patients about their wishes for the provision. In the provision phase, nurses spoke about the unique aspects of a MAiD provision. Nurses described their communicative practices from saying goodbye to patients, building relationships and meeting patients for the first time on the day of a provision, creating a comfortable environment for patients and their families, all the way through to the final moments up to and including the patient’s death. Finally, in the bereavement period, nurses spoke about how they provide support to families in the moments immediately after a patient’s death, how they support families in the next steps, and how nurses communicate with families in the days or weeks after a provision. 167 Chapter 5: Discussion 5.1 Introduction In this chapter, I will discuss how the findings from this study contribute to the existing literature on the topic of nurses’ communicative practices surrounding MAiD. This research set out to answer the primary research question: How do nurses describe their communicative practices related to Medical Assistance in Dying in Canada? To discuss the findings in the context of this research project, the discussion chapter will be framed around the secondary research questions: What are important characteristics about how nurses communicate with patients and families in discussions regarding MAiD in Canada? and What challenges exist for nurses when communicating with patients and families throughout the MAiD process in Canada? Next, as the chapter moves into implications, I will use the findings and the literature to suggest implications for practice, education, and research which relate to the secondary research questions: What supports do nurses require to communicate with patients and families throughout the MAiD process? and What additional research is required to develop knowledge of nurses’ communicative practices related to MAiD in Canada? Finally, this chapter will highlight the limitations of this study. 5.2 Summary of Findings In Chapter 4, the findings from this study were presented in an order which follows the patient through the MAiD care trajectory. This began with the contemplation period, followed by the assessment, the waiting period, and the provision and ended with the family bereavement period. The contemplation period included data from nurses in the study about how they communicate about MAiD with patients and families as they consider the idea of MAiD before 168 committing to the process. During this period, nurses spent time with patients, listening to their statements, clarifying meaning, and providing resources and next steps. Nurses also spoke about their role in bringing up the topic of MAiD and the legal and/or moral complexities around nurses communicating with patients about MAiD. Finally, in this section nurses also spoke about communicating with families when patients are considering pursuing MAiD, conversations about assisted death when MAiD is not a legal option, and briefly nurses spoke about conversations they have related to patient ineligibility for MAiD. Next, nurses’ communicative practices during the assessment period were discussed. This section discussed solely NP data as in Canada, NPs are the only nurses able to complete an assessment for MAiD. In this section, nurses spoke about how each assessment is unique to a patient and their family, and the importance of establishing rapport with patients. Nurses also spoke about the varied amount of time spent on an assessment based on patient and family needs. While some nurses described how they create an open conversation to get to the heart of the assessment, other nurses described using a structured template to complete the assessment. The assessment period is also the first time that nurses spoke about setting the scene for the provision, describing details of what patients and families can expect on the day of the provision. Finally, this section also presented the data that nurses shared about communicating eligibility to patients at an assessment. The waiting period constitutes the time between when a patient has been approved for MAiD and the day of the MAiD provision. During this time, nurses spoke about continuing the communicative practice of listening to patient stories as was discussed in the contemplation period. Nurses also voiced continuing discussions of setting the scene related to the provision using direct language and providing options for patients to create a provision that was important 169 to them. Finally, during this time, nurses spoke about the importance of discussing after-death logistics to ensure that these conversations were had before the day of provision. As nurses spoke about their communicative practices related to the provision, they spoke about how to “say goodbye” to patients choosing MAiD, as well as the unique situation of potentially meeting patients for the first time on the day of the provision, and how nurses use communication to build relationships with patients and families in this unique environment prior to the provision occurring. Nurses continued to discuss the importance of supporting a patient-centred provision by providing time for conversation, and ensuring patients have a say in how and where the provision occurs to honour a patient’s final wishes. Nurses in this study also described the unique skills of sensing what type of communication patients and families need at a provision. Finally, this section also presented data about how nurses communicate in the moments surrounding the provision, gaining final consent, sharing last words with patients, and pronouncing a patient’s death. In the final section, nurses described their role in communication in the family bereavement period. In the immediate bereavement period post-provision, nurses spoke about sharing gratitude with family members and supporting family members with the communication between funeral homes and the coroner service. After a provision occurs, bereavement follow-up largely depends on the local practices of nurses and various programs. In some cases, it is the MAiD team nurses that follow up regularly with family members to support bereavement, whereas in other areas, nurses from other programs such as home and community care might be the nurses to follow up to support family members. 5.3 What are Important Characteristics about How Nurses Communicate in relation to MAiD in Canada? 170 To answer the question about important characteristics of nurses communicative practices and MAiD, data from the findings of this study will be presented alongside existing literature to suggest that nursing presence with patients and families, patient-centred care, and nursing relational practice are significant aspects of nursing care relating to MAiD in Canada. The important characteristics of communication that will be discussed in this section include nursing presence, in relation to spending time with the patient, listening to the patient, and the important role of nursing; the role of the nurse in creating a patient-centred approach to MAiD, in relation to providing clear and direct information about a MAiD provision, asking patients and families what is important to them, and answering questions that patients and families have; and the importance of relational practice in nursing, in regards to nurses understanding what type of presence will be helpful for patients and families. 5.3.1 Nurses are Present with Patients and Families The findings from this study suggest that nursing presence is essential throughout the processes of MAiD and that this time spent with patients and their families is an important aspect of communicative practice and care throughout the phases of MAiD. In this study, nurses spoke at great length about the time they spent with patients and families and the importance of listening to patient stories and how this translates to the important role of nursing throughout the MAiD process. Similarly, other studies also acknowledged that nurses reported having time to spend with patients is not only essential for a good patient experience (de Bal et al., 2008; Denier et al., 2010), but also allowed nurses to feel more positive about the care they were providing (De Bal et al., 2008). Both this study and existing studies highlight the benefit of having time to spend with patients in multiple ways. This section will describe how the findings from this study relate to the existing literature in regards to nursing presence particularly during the 171 contemplation phase, but will conclude with a brief description on nursing presence throughout the remaining phases of MAiD. 5.3.1.1 Nurses Listen and Respond without Judgement. Firstly, during the contemplative phase, nurses in this study spoke about taking time with patients to listen to what patients are saying, and respond to their requests or inquiries about death in a non-judgmental way. Existing literature also highlights the importance of active listening and engaging in conversation to listen to what patients are saying when making a request for assisted death (Beuthin et al., 2018; Denier et al., 2010; Hébert & Asri, 2022; Ho et al., 2021; Wright et al., 2017). As one nurse stated when describing the care they provide across the MAiD continuum: “there’s just lots of listening and supporting” (Serota et al., 2023). Similarly Wright et al. (2017) described that when hearing an expressed desire for death, nurses use this as an invitation for further dialogue with patients. As one nurse described, “when that happens, you just put your stuff down, you sit down” in order to gain a better understanding of the patient’s “lived experience of dying” (Wright et al., 2017, p. 58). The same study indicated that nurses learned to do this through paying attention to verbal, non-verbal and behavioural cues from patients (Wright et al., 2017). When considering EOL communication more broadly, active listening was also seen as an important aspect of communication by multiple studies (Andrade et al., 2019; Norton et al., 2003; Strang et al., 2014). Existing literature also aligns with this research on the importance of responding to patient statements with a non-judgmental approach to care regardless of a nurse’s personal beliefs about MAiD (Beuthin et al., 2018; Denier et al., 2010) For example, Selby and Bean (2019) reported on the importance of non-judgmental conversations between nurses and 172 patients following patient statements regarding hastened death to allow for the nurse to have the opportunity to engage further in direct conversation with patients about their illness. 5.3.1.2 Nurses Clarify the Meaning Behind the Request. Next, nurses in this study spoke about the importance of taking time to clarify the meaning behind the patient’s request during the contemplative phase. While patients may not always be explicitly asking for an assisted death, nurses in this study reported taking the time to “open the discussion” to determine what the patient means, what their needs are in that moment, whether they may want to explore MAiD further, or whether the patient is making a statement with a purpose to highlight unmet needs. This strategy is found in the existing literature as well, both in contexts where assisted death is legal, and as well in situations where assisted death was not legal at the time of the study (De Bal et al., 2008; Denier et al., 2010; Ho et al., 2021; Schwarz, 2003, 2004; Wright et al., 2017). For example, one study reported that an honest conversation with a patient about their desire for death might provide a clue to the nurse that they have unmet needs that could be explored through further conversation (Wright et al., 2017), while another study indicated that by taking this time to talk with patients to gain an idea of the patient’s mindset, and giving the patient the opportunity to tell their story, nurses are able to learn more about the reason for the request for euthanasia (De Bal et al., 2008). In this current study, it was found nurses asked open-ended probing questions such as “what makes you say that”, or “tell me more about what you are feeling” to clarify the meaning behind a patient request. These types of questions, allow for the patients to take the lead in the conversation and bring up what is important to them. Similarly in existing research, other nurses voiced using similar questions such as “What do you mean? How do you feel right now?” (Dierckx de Casterle et al., 2010, p. 2413), “Can I explore more of what you’re wanting to know 173 so I can send you in the right direction?” (Beuthin et al., 2018, p. 518), or “Tell me more about that” (Selby & Bean, 2019, p. 62) as ways of opening up the discussion. 5.3.1.3 Nurses Remain Present Throughout all Phases of MAiD. In addition to listening carefully and asking specific questions during the contemplation phase, one study indicated that by returning to the conversation multiple times, nurses may gain a better understanding of the patients’ request and where it comes from (Dierckx de Casterle et al., 2010). Similarly, a nurse in another study acknowledged that conversations about assisted death are iterative and ongoing with patients and families stating “from the time someone initiates the conversation to the time the provision is had or isn’t – someone dies or chooses against it or what have you – it’s never just one conversation. It’s multiple conversations; it has multiple layers with different family members with different coordination with [multiple people])” (Ho et al., 2021, p. 7). This relates to this study as nurses described not only taking time and listening to patients during the contemplation phase, but also throughout all phases of MAiD. For example, in this study nurses also spoke about taking time with patients and listening to their needs in the assessment phase, waiting period, and even into the provision. In the assessment phase, nurses indicated that the time required to complete an assessment varies based on patient and family needs. For example, this study found that nurses spent between 15 minutes and three hours with patients and their families to complete an assessment. This time was adjusted by NPs completing the assessments based on patients’ interest in conversation, patients’ ability to engage in conversation, and the amount of emotional support required for either the patient or the family. Additionally, during the assessment phase, nurses in this study spoke about listening to patients’ life and suffering stories to gain further understanding of what has led them to this point in time. Similar to the contemplative phase, 174 many nurses voiced asking open-ended questions during the assessment to allow patients to guide the conversation. For example, one NP in this study voiced asking patients “What’s brought you to this place where you’re requesting MAiD?” which opens up the conversation to allow patients to discuss what is important to them, often giving nurses the answers they need to complete the assessment. At a provision, even with all the care, time and listening that has been provided leading up to the provision, nurses in this study described taking time to listen to patients on the day of the provision to support creating a comfortable environment. Finally, during the bereavement period, nurses spoke about adjusting the time spent with families based on needs, for example, some nurses leaving right away after a death, whereas in other situations, nurses would stay with the family until the funeral home came to remove the body. 5.3.1.4 Nursing Presence is Integral to the Process. Throughout the interviews in this study, the important role that nursing presence plays in the processes of MAiD was made clear. The findings suggest that nurses are having in depth meaningful conversations with patients at various stages which seem to be beneficial in supporting patients through the processes of MAiD as highlighted above. The findings from this study also suggest that in addition to communicating directly with patients and families, nurses have an important role of identifying patient needs and reporting them to the physician where appropriate in the contemplative phase, as well as supporting patients to navigate the healthcare system to meet their specific needs. Another study found that nurses unanimously stated the important role they have in the care of patients requesting an assisted death (De Bal et al., 2008). Similarly, in existing research, nurses described the advocate role they took on to connect patients with the appropriate clinician when requesting MAiD (De Bal et al., 2008; Selby et al., 2023). Another study highlighted that although physicians play a crucial role in MAiD administration, nurses are “widely involved in 175 the care before, during and after MAiD across all settings (Hébert & Asri, 2022). One nurse described that “one of the biggest roles we can be as nurses are advocates” (Selby et al., 2023, p. 42). This holds true with existing literature on EOL communication more broadly where, in some circumstances, nurses are the ones who are advocating for certain conversations to be had with patients (Gutierrez, 2012; Wiegand et al., 2019). This important role that nurses play by being present with the family will be built upon in the subsequent sections. 5.3.2 Nurses Communicate Directly to Create a Patient-Centred Provision The findings in this study suggest that nurses communicate in a way that promotes patient-centred care throughout the phases of MAiD. While spending time with patients, listening to their stories is one way that nurses practice patient-centred care, this section will focus on how nurses described their communicative practices which supported a patient-centred provision. Firstly, this study found that nurses took time to “set the scene” of a provision, meaning that nurses used direct language to ensure that patients knew what to expect at a provision should they choose to pursue MAiD. Secondly, nurses in this study also ensured that patients had their voice heard in regards to specific contexts surrounding the provision. 5.3.2.1 Setting the Scene. When speaking of communicative practices, nurses in this study explained the way they set the scene for the provision and communicated to patients what to expect from the moment the team arrives, through the provision, and after-death logistics. While in this study one nurse did describe vaguely explaining the process of MAiD to a patient during the contemplative phase, the majority of nurses spoke in-depth about these practices beginning in the assessment phase, and continuing through the waiting period, up to and including the provision. These conversations were often aimed at ensuring a comfortable 176 environment was created where patients and families were aware of what to expect throughout the MAiD provision. For example, in the assessment period, nurses described the importance of ensuring that patients understood the risks and benefits of the procedure, what would happen at the provision, and the expected outcome. This study highlights that nurses aimed to ensure that patients and families had the information about details of the provision, including describing the patient’s death and logistics after death. For example one nurse described they tell the patient, “the first medication will make you quite sleepy and you very likely will fall asleep pretty quickly.” Other nurses also reported on the importance of discussing the speed at which a person will fall asleep after medication is provided as nurses described wanting patients and families to be prepared for the patient’s death. After-death logistics were also described in the assessment, where nurses broached the topic of funeral homes and coroner involvement. Once again, these same conversations were had with patients during the waiting period as described by the nurses in this study with nurses using direct language to discuss MAiD, and to ensure that patients are clear on the details surrounding their death. Both Selby and Bean (2019) and Dierckx de Casterle et al. (2010) report nursing having similar conversations with patients and families. Dierckx de Casterle et al. (2010) reported that nurses were often the clinicians who spoke with the patient and family about the assisted dying process, providing information about what to expect at the time of provision among other important topics such as information about the patient’s illness and alternative options. Similar to how nurses in this study reported these conversations at various phases of MAiD, Selby and Bean (2019) reported that these conversations about what to expect on the day of MAiD are not a “one-time” conversation and are ideally had on an iterative basis through open communication with patients (p. 62). 177 As this study suggests, using direct and honest language about what to expect on a day of provision was highlighted by nurses as important. Similarly, existing research related to MAiD specifically, or other EOL circumstances also highlighted the importance of honest and direct language (Bagheri & Dholakia, 2023; Coombs, 2016; Gutierrez, 2012; Norton et al., 2003; Vaughn & Santos Salas, 2022; Wiegand et al., 2019). For example, in relation to more general EOL care, providing information about physical changes that were likely to occur at EOL (Coombs, 2016), and using simple and honest communication to “paint the picture” of what is expected at EOL (Gutierrez, 2012, p. 174) were helpful tools for nurses to support both patients and families at EOL. 5.3.2.2 Creating a Patient-Centred Provision. As one study described, many health care professionals see MAiD as a means of respecting patients’ autonomy, providing them with an additional option at EOL (Joolaee et al., 2022). While not all nurses support MAiD, those that do, as well as some conscientious objectors who are willing to speak with patients about MAiD agree it is an option that allows for broad discussions about what is important to patients as they move nearer to death (Joolaee et al., 2022). To create a patient-centred provision, this study found that nurses had ongoing conversations with patients about what they would like their provision to look like. In this study, it seemed that nurses not only took time to discuss patient wishes for a provision at the assessment, but continued to revisit these conversations right up until the day of the provision. For example, during the assessment, an NP described giving the patient and family their contact information so that at any point during the waiting period, they can reach out and ask additional questions. While not specific to the context of MAiD, Medeiros de Brito et al. (2014) found that communicating verbally with patients helps to remove the anxieties, agony, and fear that can be associated dying which may translate to this context as 178 well. In addition to NPs, other nurses working with patients during the waiting period also reported checking in with patients on an ongoing basis to see how they are feeling about MAiD, as well as if they have any specific requests for the day of the provision. Similarly, Dierckx de Casterle et al. (2010) found that once a decision to pursue assisted dying has been made, the focus of the health care team shifts to supporting the patient to provide exactly the care that patients and their relative need to make it through their last days together. These planning discussions are unique to a MAiD provision as patients and nurses take time to discuss what the patient would like their provision to look like. For example, these discussions range from who patients what to be present in the room, where the provision should take place, and any rituals patients or families would like to take part in either prior to the patient’s death or as the provision is occurring. One nurse in this study described what they might say to patients as, “I want you to think about who you would like to have with you? What you would like to be doing when this is going on? Where you would like to be? Would you like to be in your bedroom, would you like to be in a favourite chair, would you like to be sitting outside on your deck? Who do you want surrounding you? Would you want some music to be played?” Nurses appear to focus on these sorts of planning discussions to allow for the patient to have control over their situation and provide a patient-centred MAiD provision. 5.3.3 Nurses Use a Relational Practice to Determine Patient Needs The findings from this study suggest that nurses engage in a relational practice to consider what patients and families need from them in regards to communicative practices. Relational practice has been defined as “a conscious intent to act toward the espoused values and 179 goals of nursing” with “attention to the particularities of people and situations” (Doane & Varcoe, 2007). Findings from this study indicate the nurses engage in a relational approach to care through changing the language they use in caring for a patient including the way they deliver information, and their way of being in the room with patients based on the particular needs of a patient and their family members. In regards to language use, at various times, nurses indicated the way they use different language, ranging from direct to indirect. For example, in the contemplative phase, nurses voiced using both indirect and direct language to respond to a patient’s request for MAiD. For example, some nurses voiced they might ask an indirect question such as “what does that statement mean to you?” whereas another nurse may state “are you actually talking about MAiD?” in response to a patient’s wish to die statement. Where sometimes nurses seemed to use indirect language to try to gain a deeper understanding of what a patient was referring to, nurses also reported using indirect language when they were not sure about how much information they could legally provide to patients, or if they were uncomfortable with discussing the topic of MAiD. Alternatively, as described above, some nurses described using very direct language when clarifying the meaning behind a request for MAiD, as well as when describing the moment of death. For example, nurses reported describing the process of MAiD very bluntly to ensure patients have a good understanding. The use of direct language may occur throughout the various phases of MAiD, however some nurses in this study described a softening of their language at the time of provision. For example, at an assessment, a nurse described they would tell a patient: “as soon as we start to give you medication, you’re going to feel super relaxed and you’re going to… you’re just going to feel sleepy and you’re going to go to sleep... you’re not going to be aware of anything” 180 In contrast, at a provision, a nurse might use more indirect language such as when a nurse trying to plan for IV insertion stated to a patient, “I would like to know where you’re planning on being when you… when you do this” rather than speak of the patient’s death specifically. While a described change in language based on the phase of MAiD was not found within existing literature, one study reported that the language used by professionals also changes based on their relationship with the patient (Variath, 2023). For example, one palliative care doctor voiced that they used less formal language when they had an existing relationship with the patient, and more formal language when they meet the patient specifically for the MAiD provision (Variath, 2023). Nurses also utilize a relational approach to care as they sense what a patient or patient’s family needs at the time of the provision. In this study, nurses described varying ways of being in the room with the patient whether it is through verbal communication, physical touch, or varying spatial presence. While some nurses were able to describe why they made the decisions they did, others simply spoke about sensing what a patient needed in that moment. In another study nurses reported that “reading the room” is an important role nurses have at the time of a provision (Beuthin et al., 2018, p. 511). Nurses voiced the importance of focusing on the patient as first priority to determine what their needs are, and being prepared for multiple different situations (Beuthin et al., 2018). In another study, Dierckx de Casterle et al. (2010) stressed the importance of nurses being present and supporting “anyone who needs it”, keeping their eyes open and monitoring everything (p. 2415). Again, nurses described their approach may change based on their relationship with the patient and/or family, where some nurses stated they may cry or pray with the family in certain situations (Dierckx de Casterle et al., 2010). Similarly, nurses in another study spoke about non-verbal communicative practices with patients at EOL including “touch, facial expressions, body attitude and physical appearance” (Medeiros de Brito et al., 181 2014, p. 321). Nurses described these non-verbal techniques as very important to patient care (Medeiros de Brito et al., 2014). When describing aspects of mindful communication at EOL, Omilion-Hodges and Swords (2016) highlighted that discarding scripts and recognizing your role were important aspects of nurses’ communication. This aligns with the current study as nurses did not describe communicating in the same way for each patient and family member, but would adjust communication techniques based on what they saw as important for patients and families. Similarly, Omilion-Hodges and Swords (2016) also highlighted the importance of considering the audience in order to better empathize with the patient and family members. Furthermore, nurses in a study by Variath (2023) reported that by considering the specific patient and being aware of the patient’s values and wishes, nurses are better situated to support patients to make decisions for themselves. Nurses in this study exemplified this aspect of getting to know patient’s values and wishes by continuing to have open, honest conversations with patients and families throughout the MAiD process. 5.4 What Challenges Exist for Nurses when Communicating with Patients and Families throughout the MAiD Process in Canada To answer the question about the challenges that exist for nurses when communicating about MAiD in Canada, data from the findings of this study will be presented alongside existing literature to suggest that organizational and jurisdictional challenges, and the unique context of MAiD were common challenges facing nurses at the time of the study. 5.4.1 Communicative Challenges Related to Organizational and Jurisdictional Policies In regards to organizational or jurisdictional challenges regarding communicative practices about MAiD, nurses voiced a few challenges. The jurisdictional challenges nurses 182 described facing included navigating the legal requirement that nurses are not to “counsel” a patient towards suicide which could result in nurses being unsure of whether they are able to discuss or bring up the topic of MAiD. Organizationally, nurses also reported challenges in relation to the time required to discuss MAiD with patients and families. The Criminal Code of Canada states that it is a “criminal offense to counsel a person to die by suicide” as described in Chapter One (Bill C-14, 2016, s 227(3)). Nurses in this study seemed to struggle with knowing what they could and could not say in relation to MAiD to avoid being considered to have “counselled” a patient to choose MAiD. One nurse stated that they are careful about expressing MAiD as an option for patients, stating, “I'm very careful about never leading, right, or, like you said, coercing or encouraging, it's just this is an option if you want it”. Beuthin et al. (2018) also found that nurses were unsure about what they could talk about in relation to MAiD, and how they can communicate with other health professionals and patients about MAiD. In some cases, nurses in this study were so unclear about what would be considered counselling, they were hesitant to speak about MAiD at all. When nurses felt they could discuss the topic of MAiD, some nurses in this study still struggled with how much they could actually say about it. Similarly, in the existing literature, one study found that nurses were experiencing distress due to the interpretation of what is considered counselling, leading some professionals to feel as though they can’t answer patient questions appropriately (Variath, 2023). While MAiD has been legal in Canada for now eight years, language remains similarly vague with the CNPS recommending that while nurses can “share information and engage in discussions about MAiD with their patients” they must be mindful not to “encourage or incite a patient to seek MAiD” (CNPS, 2021). One study found that nurses who expressed trepidation relating to initiating MAiD conversations were more hesitant when they were unsure on 183 professional or institutional restrictions on MAiD (Ho et al., 2021). In this study, nurses spoke about navigating these challenges about discomfort or lack of awareness of what to say by referring to another healthcare professional such as a physician. For example, nurses stated, “I suggest you bring it up with your doctor” or “that is a possibility you could talk to your doctor about” as ways of providing patients with information about how to speak with someone about MAiD without having to navigate the challenge of what they can and cannot say. One review of multiple articles found that 76% of 33 articles reviewed found that there was an absence of clear professional and/or legal guidelines and role ambiguity resulting in a lack of clarity and consistency in nursing practice in relation to MAiD (Fujioka et al., 2018). Organizationally, nurses in this study voiced a lack of time as a barrier to meaningful conversations about MAiD. Similarly, Oczkowski et al. (2021) found that nurses struggled to provide consistent emotional support and bereavement care for family members due to time constraints. As well, other health care professionals also voiced lack of time as a barrier to communication about EOL, both in regards to assisted death and other EOL processes (Bellens et al., 2020; Selby & Bean, 2019; Wright et al., 2017). Adding to the distress nurses might feel when experiencing a lack of time for meaningful conversations with patients, one study found that nurses wondered if the lack of time for in-depth conversations about assisted death could increase the patient’s desire for death if they are left with unanswered questions and doubts about “the meaning of their life” (De Bal et al., 2008, p. 594). 5.4.2 Communicative Challenges related to the Unique Context of MAiD Another challenge that nurses in this study spoke about through the interviews is the uniqueness of the context of MAiD and how that can impact communicative practices. In this study, nurses described the MAiD context to be unique in a variety of ways. Nurses described 184 moral or ethical differences impacting their ability to communicate with patients about MAiD, navigating saying goodbye to patients when the date and time of death are known, being involved in patient care for a potentially very short period of time, and having to communicate about ineligibility with patients and family all to be challenges that nurses face that are unique to MAiD in Canada. These four contexts will be described in the subsequent sections below. However, before detailing how the unique context of MAiD could bring on challenges for communication, it should be noted that some nurses both in this study and in the literature voice that these conversations are not special or unique (Selby et al., 2023). 5.4.2.1 Conflicts Across Moral Differences. One area where nurses experienced challenges with the unique context of MAiD is when they have a moral or ethical challenge with the concept of assisted death. In the literature this was supported with some physicians experiencing a conflict with assisted dying and their role as a physician, and some palliative care physicians feeling that MAiD was in opposition to the principals of palliative care (Gamondi et al., 2019; Otte et al., 2017). This opposition left palliative care physicians experiencing a barrier to communication about MAiD with patients (Gamondi et al., 2019). For example, in one study of physicians, over half of the participants stated that they would not engage in a conversation about assisted death unless the patient brought up the topic first (Gamondi et al., 2019). Similarly, in this study, some nurses voiced that they were not open to discussing MAiD with their patient. In these circumstances, they would redirect the patient to discuss this with a health care professional who would be able to support the patient in this area. Nurses in this study described doing this in varying ways. Some nurses remained vague when re-directing a patient to another health care professional, for example, asking a patient who appeared to be requesting information about MAiD, if they had brought up this concern to anyone else. Other nurses were 185 more direct stating to patients that they should bring up their concerns with their doctor. The act of encouraging or redirecting a patient to another health care professional to discuss their concerns is important because while nurses are not required to participate in MAiD, nurses have an obligation not to abandon their patients (CNPS, 2021). By referring to another professional, nurses can ensure their patient receives the information they need to make their decision, without having to engage in conversations which could cause the nurse moral distress (CNPS, 2021) 5.4.2.2 Challenges Saying Goodbye. A second area that creates communicative challenges for nurses that is uniquely related to MAiD is the act of saying goodbye. As noted in this study, some nurses voiced struggling to say goodbye to patients given the unique context of MAiD where the specific date and time of death is known. Nurses voiced struggling with what to say, and the impact the act of saying goodbye might have on patients. This section will discuss both these areas of concerns, while also acknowledging that the act of closure will depend on the specific nurse-patient relationship. When discussing how nurses went about saying goodbye to patients, nurses spoke about sharing gratitude and saying goodbye. While nurses in this study did not share examples of how they verbally said goodbye to patients, they did share their uncertainty, stating “I really struggle with what do I say?” or “How do I say goodbye to this patient?” One nurse in this study stated that when they didn’t know what to say, they might not say anything, and rather just squeeze the patients hand as an act of closure. Dierckx de Casterle et al. (2010) found that as nurses took the time to say goodbye to patients pursuing assisted death, the way nurses said goodbye to patients varied based on the patient and the “character of the nurse,” and was often an emotional moment, similarly filled with gratitude and a sentiment of “good luck” or “bon voyage.” Echoing the 186 sentiments of nurses in this study, Ward et al. (2022) described that nurses were unsure of how to communicate with patients when a patient’s imminent death is known. Nurses in this study voiced their struggle to say goodbye to patients often revolved around the concern of who is benefiting from the act of closure. Nurses in this study voiced statements such as “is this for me or is this for the person? Who is this benefitting”, or “I just don't know how to [say goodbye] without making him feel bad”. One nurse who did say goodbye to a patient prior to their MAiD provision, worried afterwards that they had added the patient’s emotional burden. To avoid the risk of making a goodbye challenging or emotional for a patient, some nurses chose to use non-verbal communication such as a “squeeze” of the patient’s hand as described above, or they may find their own way to indirectly say goodbye to patients rather than risk adding to the patients emotional burden. 5.4.2.3 Being Involved for a Short Period of Time. A third unique situation about MAiD that was discussed by the nurses in this study as potentially challenging is the fact that for some nurses they may only be involved in the patient’s care for a short period of time, at a very significant point in a patient’s life. For example, RNs who act as the IV nurse for a patient, often meet the patient on the day of provision to insert the IV prior to the provision itself. Alternatively, while it did not appear common in the interviews, occasionally, an NP may meet a patient for the first time on the day of the provision. One nurse described this as “weird,” and went on to describe a situation where they met a patient for the first time on the day of the provision. The nurse described being greeted by hugs from family members who are “so excited” that the provision will be happening, completing the capacity assessment within five minutes of meeting the patient, giving the medications, and then walking out the door. To address these situations where nurses are meeting patients for the first time, nurses spoke about the importance 187 of introducing themselves, describing their role in the provision, and then taking the time to get to know the patient and their family, if present, prior to carrying on with the task that they are present to carry out. Nurses aim to get to know patients and families in the short time they have to create a meaningful experience of patients. While not discussed in detail in literature directly related to MAiD, both Benton (2017) and Strang et al. (2014) described the importance of active presence and communicating with vulnerability as important for effective communication at EOL. 5.4.2.4 Communicative Challenges Related to Patient Eligibility. Finally, nurses also spoke about the unique and challenging situation when MAiD is not an option for various reasons. As this study was completed in Canada after MAiD became legal, these conversations centred around when MAiD was not an option due to a patient not meeting eligibility requirements. In the literature, most of the challenges described in this context pertained to circumstances in which assisted death was not a legal option. In these situations, nurses felt powerless, anxious, guilt and distress (De Bal et al., 2008). Some nurses, RNs specifically, spoke about when patients and/or families asked them directly if they are eligible for MAiD and they have to indicate that they are not able to answer this for them given that it is not within their scope. These conversations could be challenging as sometimes the response can be as simple and direct as “I’m not an assessor, I can’t tell you whether I think you’re eligible or not” and other responses may require more communication explaining the requirements of the legislation for someone to be eligible for MAiD. While difficult, nurses described using direct and supportive language to support patients who were having challenges being deemed eligible for MAiD, stating “you have every right to be assessed again” to ensure patients are aware of their options. In these situations, as it is primarily RNs speaking about the pre-assessment phase, nurses were 188 clear to be direct and clear with patients and families about their role and scope in determining eligibility. Additionally, some nurses, NPs specifically, spoke about how it can be difficult to have to tell a patient that they are not eligible. One nurse specifically stated that communicating ineligibility is the most difficult part of being involved with MAiD as the nurse is so attuned to the patients suffering. Another nurse highlighted that when communicating to someone that they are ineligible for MAiD, they can sense the disappointment felt by patients, which was distressing to the nurse personally. One nurse described that communicating this ineligibility to be so difficult that in some situations they may “find someone else” to act as an assessor in situations where believe the person may not be eligible to avoid this conversation. While it is clear that communicating ineligibility is quite distressing for the nurses in this study, the data set was insufficient to fully explain why it was challenging and what strategies they have used in the past. Finally, the last situation where nurses spoke about communicative challenges of when MAiD is not an option is when patients have lost the capacity and are unable to go through the assessment for MAiD or unable to go through with the MAiD provision despite having been previously deemed eligible. Important to note is that this study was completed prior to the legislation change in 2021 and a waiver of final consent was not yet legal. These conversations involve reassessing plans, and discussing alternative options. For example, one nurse who was going to complete an assessment for someone who was no longer able to make a decision for themselves explained that they would encourage the family not to focus on the fact that the patient is no longer capable, and would shift focus to what can be done for the patient. Similarly, if plans surrounding the provision have to change, nurses described shifting the focus from what 189 cannot be done, towards focusing on what can be done, stating “I’m sorry, you wanted this at home. It doesn’t look… it doesn’t look like it will be possible. Would you want to have the procedure done in hospital?” One way in which nurses tried to reduce this challenge was by speaking with patients when initially discussing MAiD, or during the waiting period about the “what if” situations, to be able to know a patient’s alternative wish, if they did lose capacity. Existing literature confirms a loss of eligibility for MAiD as a challenging situation for nurses to navigate, particularly if conversations were had and the family and nurse were clear on the patient’s wishes (Variath, 2023). Additionally, in the same study, through conversation with the researchers, some nurses recognized that perhaps having conversations with patients and families about alternative EOL options if MAiD were to be ruled out as an option would help relieve the distress felt by nurses and family members in the event a patient loses capacity to consent to MAiD whereas other nurses and physicians indicate that they are already having these conversations (Variath, 2023). 5.5 Implications This section will describe recommendations for practice and education given this study’s findings, as well as recommendations for future research to develop this body of knowledge. Through this section the third and fourth secondary research questions related to what is required to support nurses throughout the MAiD process in relation to communication, as well as what is required in the research field to support nurses’ communication related to MAiD will be answered. 5.5.1 Implications for Practice This section will discuss the implications for practice and begin to answer the third secondary research question: What supports do nurses require to communicate with patients and 190 families throughout the MAiD process? First, nurses require clarification about what nurses can and cannot speak about, both in regards to bringing up MAiD, as well as what specifically would be considered “counselling to commit suicide”. Having clearer guidelines would be helpful for nursing practice to provide clarity to the nursing role and support nurses to be able to explain the processes of MAiD clearly to patients. One nurse in this study recommended a one-page handout that describes what to do when someone asks about MAiD. Although they did not describe what specifics would be helpful to have on the handout, they went on to state that it could be similar to a checklist. Based on this nurses’ recommendation and the rest of the findings in this study, it is recommended that clear guidelines be created for nurses and other health professionals on how to communicate about MAiD, with a specific focus on areas where there are grey areas about who can bring up the topic, and when the topic can be discussed, as well as guides for nurses who are conscientious objectors but are still willing to have conversations with patients and families about the option. This is supported by a study from Oczkowski et al. (2021), which recommended a “clear and consistent” policy and practice for nurses on how to bring up MAiD (p. 517). Secondly, in this study, nurses also voiced the desire for feedback from patients and families about the process of MAiD. Particularly as these interviews were completed early on in Canada, nurses voiced a desire for a mechanism for families to provide feedback about their experiences. As well, nurses in this study expressed a need for health care professionals to provide peer feedback to each other about their experiences of MAiD to continue to improve the knowledge gaps about MAiD. Hearing from patients and families about their experiences could provide important information to be included in practice guidelines for nurses. Additionally, 191 incorporating peer feedback into workplace processes could help nurses gain more confidence in their ability to communicate about MAiD. 5.5.2 Implications for Education This section will discuss the implications for education for nurses and continue the answer the third secondary research question: What supports do nurses require to communicate with patients and families throughout the MAiD process? It is recommended that more formal education be developed to support nurses to communicate about MAiD. In this study, some nurses voiced that they were not provided adequate education to be able to explain the process of MAiD, or provided with the knowledge of who they can reach out to for support. Nurses voiced that specialized education on communication would be helpful working with patients with life-limiting illness. Other studies have also highlighted a need for further education for communication about MAiD. For example, in existing studies, professionals reported experiencing a lack of competency relating to communication (Gamondi et al., 2019; Mathews et al., 2021; Selby & Bean, 2019) with no participants having received training on responding to requests for assisted dying; rather, they had learned by experience or through policies and guidelines (Gamondi et al., 2019). One nurse from this study recommended that having education to clarify the nurses role and having clear guidelines would be helpful to communicate about MAiD. Not only did nurses in this study recommend having guidelines for support at their workplace, nurses also recommended that having more formal education beginning in nursing school and continuing throughout their career would be helpful for developing their communicative skills. It is also recommended that more opportunities for experiential learning are provided to nurses working with patients who may be interested in pursuing MAiD. In this study, the vast 192 majority of nurses who spoke about learning to communicate about MAiD, voiced that they learned best through observation and experience. Similarly, Bellens et al. (2020) also found that time and experience were what supported nurses to gain confidence in their communicative abilities, while Oczkowski et al. (2021) described that role play, mentorship opportunities, and a clinician toolkit with communication resources were helpful for nurses to develop practical communication skills. 5.5.3 Implications for Research This section will aim to answer the fourth and final secondary research question: What additional research is required to develop knowledge of nurses’ communicative practices related to MAiD in Canada? As described throughout this thesis, there is a scarcity of literature about how nurses communicate about MAiD and how this impacts nursing practice in this new setting. Many areas in this study could be a starting point for further research. With only two studies focusing solely on nurses communication related to MAiD (Denier et al., 2010; Ho et al., 2021), the primary recommendation for research based on this study is to further the field of research about nurses communicative practices related to MAiD with a primary study. Using this thesis as a framework, if a primary study is completed about communicative practices surrounding MAiD, certain areas highlighted from this study could be used to frame the research. The primary areas highlighted in this study that would be helpful for developing further research include, reviewing the current state and practice guidelines existing for nurses 8 years post legislation, the current state of comfort of nurses in communicating about MAiD, followed by an in-depth review of particular areas of concern. For example, in this study, nurses spoke about communicating about ineligibility being a challenge, but did not speak further about why. Additionally, while nurses were clearly able to articulate how they respond to requests for 193 assisted death, both vague and direct, nursing practice could benefit from further research about specifics of responding to requests. Prior to a provision, nurses voiced internal conflict on saying goodbye to patients. While this was not voiced by many nurses in the study, from those that did voice it, as well as nurses in other studies who have voiced similar concerns, it appears that further research about how to say goodbye and gain closure would benefit nurses. Finally, further research into how nurses learn to read non-verbal cues from patients and families, as well as how they utilize their nursing knowledge and relational practice to respond individually to patient needs would support the nursing profession as it relates to MAiD communicative practice. By reviewing these specific areas of nurses communicative practice, research would be able to highlight specific areas of concern and challenges, as well as determine where further support is needed. Additionally, it is recommended that future research consider diverse perspectives of communication. As Elbaum et al., (2023) write, “patients are shaped by diverse cultural identities and that cultural factors are central to how every person experiences serious illness and decision-making” (p. 86). It is recommended that future research investigate how nurses consider communicative practices in the context of varying patient and family cultures to ensure that research findings can be applied across diverse settings. While this research gives good insight into how nurses say they currently communicate about MAiD with patients and families, it cannot claim to be a comprehensive guide on how nurses ought to communicate about MAiD. With further research focusing specifically on developing an understanding of communicative best practices, a comprehensive guide for nurses could be created as a support for nurses. 5.6 Limitations 194 While this study contributes to the literature on the topic of nurses’ communicative practices relating to MAiD, it also has its own limitations. As a secondary analysis, the concept of this study was designed after the interviews had already been conducted and the interview guide for this study did not directly ask nurses about communicative practices. While nurses in the study were able to talk about communication if it was important for them based on the questions asked, nurses were not asked specifically to speak about communicative practices. In this way, if nurses felt discomfort with the topic on how they communicate about MAiD, they may not have brought it up as a topic generally, or perhaps did not discuss it in the same level of detail as if it was asked as a question specifically. Additionally, as a secondary analysis, the data collected in the original study did not allow for the exploration and examination of diverse perspectives as they relate to communication with patients and families. Further, as communicative practices were not directly asked within the interviews, some of the 42 nurse participants spoke minimally about communication and therefore the size of the sample in this study not be large enough to be a representative sample of Canadian nurse perspectives. Secondly, another limitation to this study is the fact that this secondary analysis was conducted in 2023, when the interviews with nurses were conducted in 2017. This does limit the applicability of the findings to the current state of nursing practice as nurses may have developed their communicative practices in the time period given that in 2017 the practice of MAiD was so new in Canada. Thus, while the study’s finding gives good insight into communicative practices of MAiD by nurses in 2017, these practices may be different in 2024 and for that reason, further research into the current state is recommended as above. Finally, the sampling method for this study was a convenience sample where nurses were able to self-select to be involved in this study. This could have led to only nurses desiring to talk 195 about MAiD to be included in the study, and likely those who are passionate one way or another to discuss the topic of MAiD. In this way, a great number of nurse experiences were left out of the study and therefore there is a lack of generalizability and transferability in this study. Regardless of the limitations of this study, this paper provides a highlight of a sample of nurses throughout Canada and their experience of MAiD, specifically in regards to communicative practices and provides suggestions for the implications on practice, education, and research. 5.7 Chapter Summary In this chapter, the findings of this study were discussed in relation to the existing literature on the topic of MAiD. The discussion was presented, answering the secondary research questions of this study including: What are important characteristics about how nurses communicate with patients and families in discussions regarding MAiD in Canada? and What challenges exist for nurses when communicating with patients and families throughout the MAiD process in Canada? Next, the implication section of this chapter went on to answer the subsequent research questions What supports do nurses require to communicate with patients and families throughout the MAiD process? and What additional research is required to develop knowledge of nurses’ communicative practices related to MAiD in Canada? focusing recommendations for practice, education and research. Finally, this chapter presented the limitations of this study. The conclusion to this study will be presented in the final chapter. 196 Chapter 6: Conclusion In this study, I set out to answer the question, “How do nurses describe their communicative practices related to Medical Assistance in Dying in Canada?” Before answering this question, this conclusion will describe the steps I took to answer the research question. After providing a brief history of MAiD in Canada and an overview of nursing communication, particularly EOL communication, a literature review was presented focusing on nurses’ communication at EOL, multidisciplinary communication about MAiD in particular, and concluded with literature specific to communicative practices related to MAiD. The findings from this study were presented in a way that follows the patient trajectory pursuing MAiD, beginning with the contemplation phase, followed by the assessment, the waiting period, the provision, and concluding with the bereavement period. The findings chapter concluded with particular recommendations from nurses voiced during the interviews. When considering the answer to the question “How do nurses describe their communicative practices related to Medical Assistance in Dying in Canada?” a key takeaway is that nurses describe communicative practices as an essential part of their role from the initial phases of MAiD, all the way through to the provision of MAiD and supporting families after a patient’s death. Nurses describe the importance of being present with patients and families, listening to them without judgement, clarifying the meaning of what patients are saying, and maintaining an active presence through the phases of MAiD. Next, nurses described their ongoing conversations with patients and their families to help “set the scene” of what to expect at a provision and support a patient-centred provision. Finally, nurses described the relational practice they employ to consider what individual patients and family members may need in regard to communication in any given situation. 197 In the discussion chapter, the secondary research questions were answered, embedding the findings within the existing literature to describe the current practices of nurses and the challenges nurses face. Common communication challenges that nurses described facing in this study include the challenge of navigating organizational and jurisdictional policies, communicating across moral differences, saying goodbye to patients in a new context of death, only being involved in the patient’s care trajectory for a short period of time, and communicating with patients about their eligibility for MAiD. Finally, the discussion chapter also presented recommendations for practice, education, and research related to this topic, as well as the study’s limitations. 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Medical assistance in dying (MAID). https://yukon.ca/sites/yukon.ca/files/hss/hss-medical-assistance-dying-continuing-care-policy.pdf 217 Appendix A: Scoping Review This scoping review of the literature was completed in June 2022.1 CINAHL, Medline, EMBASE, and PsycInfo were searched independently using a combination of controlled vocabulary headings and keywords. Controlled vocabulary headings such as "Communication", "Nurses", and "Assisted Suicide" were used in addition to key terms used to describe terms for MAiD that may not be included in the "Assisted Suicide" or "Euthanasia" controlled vocabulary headings in each of the databases such as "MAID" or "medical assistance in dying." After duplicates were removed, (855) articles remained. The initial title and abstract screening included empirical articles (qualitative, quantitative, or mixed methods), articles written in the English language, available through the UBC library, and excluded articles that did not have a primary focus on nurses' communication and MAiD. After the initial screening (4) articles remained. The final articles were reviewed in entirety, and articles that did not focus on nurse communication regarding MAiD were further excluded, and articles that were completed in settings where assisted dying was not legal were also excluded. The final number of articles for this scoping review is n=2. The search strategy used can be found in Appendix B. Appendix C details the PRISMA flow diagram, and Appendix D presents the data synthesis table of the final articles included in the study and summarizes the purpose, design, data sample, methodology, strengths and limitations, and findings. 1 In March 2024, the search strategy for this scoping review was completed again to determine if any additional articles that met the inclusion criteria were published since June 2022. No additional articles were found that met the inclusion criteria. 218 Appendix B: Search Strategy Subject Headings/Keywords EMBASE SH: assisted suicide OR euthanasia OR right to die [23740] OR Keywords: "medical assistance in dying" or "MAID" or "assisted death" or "assisted suicide" or "euthanasia" [37543] AND SH: nurse OR registered nurse OR nurse practitioner OR advanced practice nurse OR clinical nurse specialist OR licensed practical nurse OR staff nurse [170759] Keywords: “nurse*” or “nursing” [841255] AND SH: communication skill OR interpersonal communication [184781] OR Keywords: communicat* or conversation* [720631] = 337 DONE June 6 2022 CINAHL ST: Communication+ [313800] or Keywords: “communicat*” or “conversation*” [249411] AND ST: Nurses+ [245665] or Keywords: “nurse” or “nurses” or “nursing” [998659] AND ST: Suicide, Assisted or Euthanasia+ or Right to Die [11835] OR Keywords: “MAiD” or “Medical assistance in dying” or “assisted death” or “assisted suicide” or “euthanasia” [10894] = 381 DONE June 6 2022 MEDLINE MeSH: Nurses+ [95354] or Keywords: “nurse” or “nurses” or “nursing” [1068220] AND MeSH: Euthanasia+ OR Suicide, Assisted OR Right to Die [20647] OR Keywords: “maid” or “medical assistance in dying” or “assisted death” or “assisted suicide” or “euthanasia” [31164] AND MeSH: Communication+ [346074] OR Keywords: communicat* OR conversation* [811504] = 487 DONE June 6 2022 PSYCINFO DE: Communication [49367] or Keywords: communicat* OR conversation* [457677] AND DE: Nurses [31672] or Keywords: “nurse” or “nurses” or “nursing” [184998] AND DE: Assisted Suicide or Euthanasia [2575] OR Keywords: “maid” or “medical assistance in dying” or “assisted death” or “assisted suicide” or “euthanasia” [3903] = 63 DONE *Highlighted in yellow, made no difference in search results 219 Appendix C: Prisma Flow Diagram PRISMA 2009 Flow Diagram Records identified through database searching (n = 1223) n = 376 (CINAHL – 1 went missing) n = 482 (MEDLINE) n = 337 (EMBASE) n = 63 (PsycInfo) Screening Included Eligibility Identification Additional records identified through other sources (n = 0 ) Duplicates removed (n = 854) Records screened (n = 4) Records excluded (n = 824) Full-text articles assessed for eligibility (n = 4) Full-text articles excluded, with reasons (n = 2) 2 articles excluded as they discussed communicating about assisted death in a time or place where it is illegal Studies included: Qualitative (n = 2) Quantitative (n = 0) Mixed Method (n = 0) 220 Appendix D: Data Synthesis Table Authors and Year Research Questions, Purpose, and Argument Methodology and Sample Main Results Strengths & Limitations (Ho et al., 2021) Purpose: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life cEare discussions between patients and multidisciplinary specialist palliative care providers. Questions: explored the perspectives of specialist palliative care clinicians on discussing MAiD with patients and families within routine end-of-life care planning Conclusion: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. Design: Qualitative thematic analysis of semi-structured interviews Sample: 48 specialist palliative care providers Physicians 22 Nurses 15 SW 7 Allied Health 4 Sample Strategy: purposive sampling 5 themes associated with MAiD affecting end of life discussions: 1) Concerns over having proactive conversations about the desire to hasten death • Trepidation about initiating conversations (regardless of support for MAiD) • Congruence between PC philosophy and MAiD • Worried about upsetting patients due to stigma • Concern re: disrupting therapeutic relationship 2) Uncertainties regarding wish-to-die statements • The need to clarify ambiguous statements • Clarifying client’s goals • Concerns about addressing clients wish to die statements without influencing 3) Conversation complexities around procedural matters • Logistics • Concern re: losing capacity • When client doesn’t want family to know 4) Shifting discussions about suffering and quality of life • Discussing MAiD as an end of life care planning • Uneasiness when patients’ suffering could have been managed by other measures 5) The need and challenges of promoting open-ended discussions • Open, compassionate, non-judgemental exploratory discussions regarding patients’ EOL care goals • Iterative exploratory discussions to uncover psychosocial and existential concerns Strengths: Limitations: • Forgoes generalizability in favour of in-depth exploration • 2 cities, mostly female participants, secular institutions 221 Authors and Year Research Questions, Purpose, and Argument Methodology and Sample Main Results Strengths & Limitations (Denier et al., 2010) Purpose: To describe the communication during the euthanasia care process for mentally competent, terminally ill patients in general hospitals in Flanders, as seen from the perspective of the nurse. Questions: Conclusion: This article adds to the growing body of literature on nursing care for patients requesting euthanasia. The findings suggest that for nurses, communication is a key instrument for realising good-quality euthanasia care Design: Grounded Theory Design with semi-structured interviews Sample: 18 Flemmish nurses Sample Strategy: Purposive sampling superceded by stepwise theoretical recruiting (1) Communication in the context of care for the patient and family: • Patient alone, patient and family and family alone Forms of communication: • Active listening, open ended questions • Providing information: regarding diagnosis, prognosis, describe and define concepts and actions, presenting alternative possibilities • Translation: between physician and patient, family and patient (and mediate) • Consultation: going through the steps of the procedure together, making arrangements • Provide advice: take time, talk with family, talk with physician • Non-euthanasia-related conversation – experiences, wishes, concerns, remembrances Communication Attitudes • Openness and attentiveness • Patience • Trustworthiness – fair and honest Purpose • Gaining certainty • Standing up for the patient • 202affCreating peace • Coming to terms with the approaching euthanasia death • Evaluation (2) Communication in the interprofessional context Forms of Communication • Providing information, discussion and consultation, active listening, providing advice Communicative attitudes • Open and attentive, patience, embodying fairness, approachability Purpose • Gaining certainty, creating a balance, clarity and peace Strengths: insight into complexity of nurse’s communication Limitation: None listed Need: more information about communication in euthanasia care process with non-terminal patients, in home care and in residential care
Thesis/Dissertation
eng
Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Pesut, Barbara
Nurses’ communicative practices related to medical assistance in dying (MAiD)
Text