Health and Social Development, Faculty of (Okanagan)
Nursing, School of (Okanagan)
DSpace
UBCO
Schroeder , Jocelyn
Master of Science in Nursing - MSN
University of British Columbia
Background: In 2016 Canada passed legislation which legalised Medical Assistance in Dying (MAiD), allowing eligible Canadians the ability to receive a lethal substance to end their life under certain circumstances. Nurses in Canada have a significant role in providing care to clients before, during, and after a MAiD death. Nurses’ and nursing students’ experiences with MAiD thus far have been complex. The purpose of this study was to develop a survey to assess nursing students’ attitudes toward and willingness to participate in MAiD in the unique Canadian context. Methods: This study created and initially validated a survey that can be used at a future date to assess nursing students’ and their attitudes toward, and willingness to participate in, MAiD. This study utilized item generation techniques, a Delphi method with panel of expert nursing faculty, and a cognitive interview focus group with nursing students to prioritize, refine, and validate the survey questions. Results: The final survey consisted of 45 questions including four case studies. Categories of the survey included questions relating to: participant demographics, experiences with end-of-life and MAiD, knowledge of MAiD, agreement/disagreement with MAiD, influences of beliefs about MAiD, willingness to participate in roles related to MAiD, and clinical case scenarios. Discussion: This study provided a significant step in being able to assess nursing students’ attitudes toward MAiD in Canada, and the results aligned with existing literature. Each category of the survey proved to be an important area of future study, with several controversies providing a focus for future research.
NURSING STUDENTS’ ATTITUDES TOWARD, AND WILLINGNESS TO PARTICIPATE IN MEDICAL ASSISTANCE IN DYING (MAID) IN THE CANADIAN CONTEXT: Survey Development by Jocelyn Schroeder BSN, University of Victoria at Selkirk College, 2011 A THESIS SUBMITTED IN PARTIAL FULLFILMENT OF THE REQUIRMENTS FOR THE DEGREE OF MASTER OF SCIENCE in The College of Graduate Studies (Nursing) UNIVERSITY OF BRITISH COLUMBIA (Okanagan) November 2022 © Jocelyn Schroeder, 2022 ii The following individuals certify that they have read, and recommend to the College of Graduate Studies for acceptance, a thesis/dissertation entitled: Nursing Students’ Attitudes Toward, and Willingness to Participate in Medical Assistance in Dying (MAiD) in the Canadian Context: Survey Development submitted by Jocelyn Schroeder in partial fulfillment of the requirements of the degree of Master of Science Dr. Barb Pesut, School of Nursing Supervisor Dr. Lise Olson, School of Nursing Supervisory Committee Member Dr. Nelly Oelke, School of Nursing Supervisory Committee Member Dr. Sabre Cherkowski, School of Education University Examiner iii Abstract Background: In 2016 Canada passed legislation which legalised Medical Assistance in Dying (MAiD), allowing eligible Canadians the ability to receive a lethal substance to end their life under certain circumstances. Nurses in Canada have a significant role in providing care to clients before, during, and after a MAiD death. Nurses’ and nursing students’ experiences with MAiD thus far have been complex. The purpose of this study was to develop a survey to assess nursing students’ attitudes toward and willingness to participate in MAiD in the unique Canadian context. Methods: This study created and initially validated a survey that can be used at a future date to assess nursing students’ and their attitudes toward, and willingness to participate in, MAiD. This study utilized item generation techniques, a Delphi method with panel of expert nursing faculty, and a cognitive interview focus group with nursing students to prioritize, refine, and validate the survey questions. Results: The final survey consisted of 45 questions including four case studies. Categories of the survey included questions relating to: participant demographics, experiences with end-of-life and MAiD, knowledge of MAiD, agreement/disagreement with MAiD, influences of beliefs about MAiD, willingness to participate in roles related to MAiD, and clinical case scenarios. Discussion: This study provided a significant step in being able to assess nursing students’ attitudes toward MAiD in Canada, and the results aligned with existing literature. Each category of the survey proved to be an important area of future study, with several controversies providing a focus for future research. iv Lay Summary Medical Assistance in Dying (MAiD) allows eligible Canadians the ability the receive a lethal substance to end their life. Nurses often spend the most time with clients compared to any other healthcare professional, and care for clients at all stages of a MAiD death. Nurses in Canada have the right to choose whether or not to participate in MAiD, and research has shown that their attitudes have been conflicted and experiences complex. Nursing students are the next generation of nurses, and assessing their attitudes toward MAiD will allow educators to better prepare them. A survey was created to assess nursing students’ attitudes, and their willingness to participate in, MAiD. The survey was created by reviewing current research, and the unique Canadian legislation, then reviewing these questions with expert nursing faculty and nursing students to adapt and create a final survey. v Preface This thesis is unpublished and original work of the author Jocelyn Schroeder. Ethics for this study was granted and approved by the Selkirk College Research Ethics Board (REB) ID # 2021-011, and the University of British Columbia Behavioral Research Ethics Board ID # H21-01181 prior to commencing the research. vi Table of Contents Abstract .......................................................................................................................................iii Lay Summary..............................................................................................................................iv Preface…………………………………………………………………………………………..v Table of Contents........................................................................................................................vi List of Tables................................................................................................................................x List of Figures………………………………………………………………………………….xi Acknowledgments......................................................................................................................xii Dedication ..................................................................................................................................xiii Chapter 1: Introduction...............................................................................................................1 1.1 Legislation and History of MAiD in Canada…………………………………………2 1.2 Euthanasia and MAiD in Canada…………………………………………………......3 1.3 Canadian Statistics on MAiD…………………………………………………………5 1.4 MAiD Recipients in Canada……………………………………………………….....6 1.5 Registered Nurses Role in MAiD in Canada…………………………………………7 1.6 Nurse Practitioners Role in MAiD in Canada………………………………………...9 1.7 Conscientious Objection…………………………………………………………….10 1.8 Current Legislative Controversy…………………………………………………….10 1.9 Purpose of Study…………………………………………………………………….18 Chapter 2: Literature Review………………………………………………………………....20 2.1 Databases and Inclusion/Exclusion Criteria………………………………………....20 2.2 Overview of Literature………………………………………………………………21 2.3 Nurses Attitudes Toward MAiD…………………………………………………….21 vii 2.4 Nurses Intentions Toward Involvement in MAiD in Canada………………………..25 2.5 Nurses Experiences with MAiD in Canada………………………………………….27 2.6 Nurse Practitioners Experiences with MAiD in Canada…………………………….30 2.7 Medical Students’ Attitudes Toward MAiD/PAD…………………………………..31 2.8 Nursing Students’ Attitudes Toward and experiences with MAiD………………….32 2.9 Nursing Students’ Experiences with Death and End-of-Life Care…………………..34 2.10 Overview of Existing Instruments………………………………………………….36 2.11 Summary……………………………………………………………………………36 Chapter 3: Methods…………………………………………………………………………….38 3.1 Survey Questionnaire Development…………………………………………………38 3.2 Relevant Concepts and Conceptual Definitions……………………………………..39 3.3 Study Design…………………………………………………………………………42 3.4 Phase One: Item Development……………………………………………………….42 3.4.1 Item generation using deductive and inductive approaches……………….43 3.5 Phase Two: Delphi Method for Item Prioritization and Refinement………………...44 3.5.1 Advantages and limitations………………………………………………...45 3.5.2 Participants and sample………………………………………………….....45 3.5.3 Data collection Round One………………………………………………...46 3.5.4 Data collection Round Two………………………………………………..47 3.5.5 Data analysis…………………………………………………………….…48 3.6 Phase Three: Cognitive Interview Focus Group……………………………………..49 3.6.1 Advantages and limitations………………………………………………...50 3.6.2 Participants and sample………………………………………………….....50 viii 3.6.3 Interview guide development and data collection for cognitive interview focus group……………………………………………………………51 3.6.4 Data analysis for cognitive interview focus group………………………...52 3.7 Ethical Considerations and Confidentiality………………………………………….52 3.8 Knowledge Translation and Dissemination………………………………………….54 Chapter 4: Results………………………………………………………………………………55 4.1 Phase One: Item Generation…………………………………………………………55 4.1.1 Case studies………………………………………………………………..55 4.1.2 Survey questions…………………………………………………………...56 4.2 Phase Two: Delphi Survey…………………………………………………………...61 4.2.1 Phase 2.1 Delphi Round One………………………………………………61 4.2.2 Phase 2.2 Delphi Round Two……………………………………………...63 4.3 Phase Three: Cognitive Interview Focus Group …………………………………….72 4.3.1 Theme One: Unclear or ambiguous wording of questions………………...74 4.3.2 Theme Two: Difficulty answering questions based on context or personal knowledge………………………………………………………………………..76 4.3.3 Theme Three: Additional response options requested……………………..77 4.3.4 Theme Four: Emotional responses evoked by questions…………………..78 4.4 Summary……………………………………………………………………………..82 Chapter 5: Discussion…………………………………………………………………………..84 5.1 Key Findings…………………………………………………………………………84 5.1.1 Demographic questions…………………………………………………….84 5.1.2 Experiences with end-of-life and MAiD………………………………...…87 ix 5.1.3 Knowledge of MAiD…………………………………………………...….88 5.1.4 Agreement/disagreement with MAiD…………………………………...…90 5.1.5 Influences of beliefs about MAiD……………………………………...…..91 5.1.6 Willingness to participate in roles related to MAID…………………….....93 5.2 Strengths and Limitations……………………………………………………………96 5.3 Recommendations for Future Research……………………………………………...97 5.4 Implications for Nursing Practice……………………………………………………98 5.6 Implications for Nursing Education………………………………………………...100 5.7 Summary……………………………………………………………………………101 References……………………………………………………………………………………...103 Appendices……………………………………………………………………………………..113 Appendix A: Quantitative Data Extraction Table: Existing Instruments………………113 Appendix B: Qualitative Data Extraction Table: Canadian Studies and Literature……116 Appendix C: Full Survey Delphi Round One…………………………………………..117 Appendix D: Decision for Survey Questions: Delphi Round One……………………..124 Appendix E: Final Survey for Focus Group Interview…………………………………132 Appendix F: Discussion Guide for Focus Group Interview……………………………141 Appendix G: Final MAiD Survey………………………………………………………144 x List of Tables Table 1 Survey for Delphi Round One…………………………………………………………58 Table 2 Characteristics of Faculty Participants…………………………………………………61 Table 3 Decisions for Survey Questions: Delphi Round Two………………………………….64 Table 4 Characteristics of Student Participants…………………………………………………72 Table 5 Questions Adapted of Removed Based on Cognitive Interview Focus Group…………80 xi List of Figures Figure 1 Median Ranking of Level of Importance for Each Survey Item………………………69 Figure 2 Percent Level Ranking of Importance for Each Survey Item………………………….70 Figure 3 Summary of Results from Phase One, Two & Three…………………………………..83 xii Acknowledgements I would like to start by expressing my deepest gratitude to my supervisor Dr. Barb Pesut. Dr. Pesut embodies everything I strive to be as a mentor, educator, academic, and researcher. Dr. Pesut truly believed in me, and helped me to have confidence in my abilities. I am most appreciative of her kind and nurturing approach, and I could not have completed my studies without her constant guidance, unwavering support, and patience. I would also like to acknowledge and thank my committee members Dr. Lise Olson and Dr. Nelly Oelke. I feel so fortunate to have had such expertise on my research team. Dr. Olson and Dr. Oelke provided constant mentorship, and challenged me to be a better writer and student. I am so grateful for their feedback and collaboration on this study. Finally, I would like to acknowledge the nursing faculty and nursing students who participated in this research. Thank you for offering your time, and thoughtful insights and responses. xiii Dedication I would like to dedicate this thesis to several important influences in my life. First my husband Dave, who has been a constant in my life for the past 20 years. I could not have done this work without your strength, love, and partnership. Thank you for always giving me the space and confidence to grow as an individual, and for being by my side through everything life has to offer. I would also like to dedicate this thesis to my parents Lenore and Dennis. Your unconditional love has provided the foundation I needed in life to not only become a successful nurse, but to always chase my dreams and to approach life with confidence, compassion, kindness, and laughter. 1 Chapter 1: Introduction Medical Assistance in Dying (MAiD) has become an emerging and highly relevant topic in Canadian health care since the passing of Bill C-14 in 2016, which amended Section 241 of the Criminal Code’s prohibition on assisted suicide, allowing the provision of MAiD in Canada (Legislative summary of Bill C-14, 2016). Currently, there is an increasing amount of research on MAiD in regards to the perceptions of the public and physicians; however, empirical evidence around nursing students in the Canadian context is limited. This introduction includes background information on MAiD, the historical and legal history of MAiD in Canada, and an overview of the empirical literature exploring the experiences of nurses and nursing students in relation to MAiD, including existing measurement tools and scales. With MAiD being one of the most ethically charged issues in Canadian healthcare, increasing numbers of clients requesting MAiD, and an ageing population, it is imperative that the perceptions and intentions of both nurses and nursing students are examined, due to their potential participation in this process. The Government of Canada Action for Seniors Report (2014) confirms that the ageing population has been rapidly growing in Canada, and it is estimated that by the year 2030, seniors over age 65 will make up 23% of Canada’s total population. Since legislation, 31, 644 Canadians have received MAiD, with 83.3% of these cases being clients over the age of 65, making MAiD an increasingly important and relevant topic for the aging population (Government of Canada, 2022). Nurses play an integral role in providing direct palliative care, assisting with natural deaths, and participating in the provision of MAiD (Canadian Nurses Association, 2017). Compared to other healthcare professionals, nurses have the most direct and consistent contact with clients at end of life (Albers et al., 2014). At this time in Canada, nursing students may not 2 get direct experience with MAiD provision during their clinical placements, which increases the gap between theory and practice (Green et al., 2020). Given that MAiD is both a complex moral and ethical topic, it is important that nursing students have had education and experience with both moral reasoning and ethical awareness, to support effective decision making and compassionate client care. Research suggests that end-of-life care is a leading cause of moral distress for nurses in the practice setting (Baldwin, 2010). A synthesis of ethical implications of nurses’ experiences with assisted death by Pesut and colleagues (2019), highlights the increasing importance of moral reflection for nurses, especially in regards to the increasing number of options at end-of-life, such as MAiD. Nursing students are graduating from their nursing programs and being faced with ethical and moral decision making about their role in MAiD, potentially without having had ample time during their clinical practice and education to analyze their own perceptions and intentions with MAiD. By reviewing and developing a specific measurement tool that can be used to inform a future study with nursing students, data can be obtained to help inform educational efforts surrounding MAiD. 1.1 Legislation and History of MAiD in Canada In Canada, MAiD and assisted suicide have long been discussed and debated as ethical issues, and legal cases have been before the Canadian judicial system for decades. In 1993 Susan Rodriguez made a request to the Supreme Court of British Columbia to have the legal right to die. Rodriguez suffered from a progressive and physically limiting disease called amyotrophic lateral sclerosis (ALS). At the time of this request, MAiD was not legal in any country or jurisdiction in the world (Government of Canada, 2019). In the case of Rodrigues v. British Columbia, the decision was taken to the Supreme Court of Canada, where Rodriguez lost her case (Legislative Summary of Bill C-14). Following this court decision there were other private 3 bills, extensive studies on euthanasia, and a report from the Royal Society of Canada on the issue of euthanasia (Legislative Summary of Bill C-14). Legislation for MAiD in Canada was later created in response to the 2015 Carter v. Canada (Attorney General) decision, where years after the Rodriguez case of 1993, the Supreme Court of Canada unanimously struck down the prohibition of assisted suicide, which previously made all forms of MAiD or euthanasia in Canada illegal. The Carter decision determined that section 214 and 14 violated an individual’s rights and freedoms within the Canadian Charter of Rights and Freedoms (Legislative Summary of Bill C-14). Following this decision, the Government of Canada introduced Bill C-14, that “sets out the requirements for the provision of medical assistance in dying (MAiD) and establishes exemptions to various Criminal Code offences for physicians, nurse practitioners, pharmacists, and certain other persons who provide or assist in the provision of MAiD” (Legislative Summary of Bill C-14, p. 1). This legislation states that Canadians who meet the eligibility criteria can now legally access MAiD, making Canada the sixth country in the world to legalize euthanasia. During the time of the Carter decision, euthanasia was permitted in Columbia, Belgium, the Netherlands, and Luxembourg while physician assisted death was permitted in four US states (Oregon, Washington, Vermont, and California) and Switzerland (Government of Canada, 2019). 1.2 Euthanasia and MAiD in Canada In Canada, there are two methods for receiving MAiD: 1. A substance that is directly administered by a physician or nurse practitioner that causes death, or 2. The prescribing of a substance to an individual who then takes the substance themselves to end their life (Government of Canada, An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) (2016)). Euthanasia is defined as a death that is brought about by 4 the direct actions and interventions of someone else, typically a physician or healthcare professional, with the intention of the client knowingly ending their life (Cholbi, 2017). On the other hand, assisted suicide refers to a situation in which a client ends their own life by taking a prescribed lethal agent. In Canada, the term MAiD has replaced the terms voluntary euthanasia or physician-assisted death (Government of Canada, 2020). This change in terminology was chosen in the legislation to avoid the value-laden language of euthanasia, and to acknowledge the role of both physicians and nurses in the process. Canada was the first country to allow nurse practitioners to act as MAiD assessors and providers. Practitioners who are involved in MAiD are referred to as assessors (those who determine whether eligibility criteria have been met) and providers (those who administer or prescribe the drugs that end life). In regards to the provision of MAiD, the Government of Canada (2020) provides the legislative framework, however professional practice is further guided by governing or regulatory professional bodies, provinces and territories, and institutions and health authorities. In regards to terminology within this review, the term MAiD will be used in relation to Canadian studies, Physician Assisted Death (PAD) will be used in the context of studies done in the United States, and euthanasia will be used for all other instances and studies. The original eligibility criteria in Canada in 2016 stated that a client was eligible for MAiD if the following criteria were met: (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 of age and capable of making decisions with respect to their health; (c) they have a grievous and irremediable medical condition; 5 -serious and incurable illness, disease or disability -advanced state of irreversible declined on capability -intolerable physical or psychological suffering -natural death has become reasonably foreseeable (d) they have made a voluntary request for medical assistance in dying that, in particular, was not made as a result of external pressure; and (e) they give informed consent to receive medical assistance in dying after having been informed of the means that are available to relieve their suffering, including palliative care” (An Act to Amend the Criminal Code and to Make Related Amendments to Other Acts (Medical Assistance in Dying), S.C. 2016, C.3, s.241.2 (1)) 1.3 Canadian Statistics on MAiD Since legislation, there have been three annual reports published on MAiD by the Government of Canada. Most recently, the third annual report on MAiD in Canada, released in June 2022, shows that 31, 644 Canadians have received MAiD in Canada since legislation. These numbers have been consistently increasing, which The Government of Canada (2021) suggests is likely due to enhanced public knowledge and increased access to MAiD. In 2021, the rate of MAiD cases increased by 32.4% compared with 2020, and MAiD accounted for 3.3% of all deaths in Canada, with Ontario, Quebec, and British Columbia being provinces having had the three highest percentages of reported cases (The Government of Canada, 2022). Uniquely, British Columbia has seen the highest increase in deaths due to MAiD compared to other provinces, which the first annual report suggests may be due to the legal history of MAiD in British Columbia, along with increased social activism--both the Carter and Rodriguez cases originated in British Columbia (Government of Canada, 2020). Locations for MAiD in Canada 6 in 2021 included private residences (44.2%), hospitals (28.6%), palliative care facilities (19.6%), long-term care facilities (6.1%), and other locations (1.5%) (Government of Canada, 2022). 1.4 MAiD Recipients in Canada Based on the third annual report, the average age of Canadians’ who received MAiD was 76.3 years, with rates being equally distributed between men (n = 52.3%) and women (n = 47.7%) (Government of Canada, 2022). At a rate of 65.6%, cancer was reported as the most common underlying condition of clients who received MAiD. Other reported underlying conditions included: cardiovascular (18.7%), respiratory (12.4%), and neurologic conditions (12.4)%. With an ageing population, and an increase in the leading underlying conditions for which people request MAiD, these requests are estimated to increase (Government of Canada, 2019). A new data set in the third annual report is the profile of people that received MAiD whose death was not reasonably foreseeable, as this was a new update to the legislation. These deaths accounted for 2.2% of all MAiD deaths in Canada. When death was not reasonably foreseeable, the top three underlying medical conditions reported were neurological (45.7%), other (37.9%), and multiple comorbidities (21.0%) (Government of Canada 2022). In Canada, physicians and NPs are responsible for discussing, documenting, and reporting the clients’ nature of suffering related to their MAiD request, which is explored during the assessment for eligibility. In regards to the rationale for choosing MAiD, the nature of suffering for clients who requested MAiD was reported as being closely linked to the persons’ loss in autonomy. In 2021 the three most common reasons for clients who received MAiD included: loss of ability to engage in meaningful life activities (86.3%), loss of ability to perform activities of daily living (83.4%) and inadequate control of symptoms other than pain (57.6%) (Government of Canada, 2022). Other themes in the nature of suffering of clients included: loss 7 of dignity, perceived burden to family/loved ones, isolation, loneliness, poor/loss of quality of life, and emotional distress (Government of Canada, 2022). These results were similar in the first and second annual report. An important discussion that has come to light since the legislation of MAiD in Canada, is the adequacy or inadequacy of palliative care services at end-of-life, and if access to services is a variable impacting the clients’ decision to request MAiD. The first annual report found that 82.1% of clients reported having received palliative care services prior to requesting MAiD, with a majority of clients (89.6%) having had access to palliative care (Government of Canada, 2019). These results were similar in the third annual report, where 80.7% of those who requested MAiD received palliative care (Government of Canada, 2022). It is important to note that specific details about the adequacy of palliative services were not provided in the annual reports, and the need for further research is highlighted. Nevertheless, the authors of the report (2019) comment that “these findings seem to suggest that requests for MAiD are not necessarily being driven by a lack of access to palliative care services” (p.24). These conclusions were also consistent in the second and third annual reports. In addition, an interesting finding in the Government of Canada’s second annual report in (2020) suggested that “the COVID-19 pandemic did not affect the availability of palliative care for MAiD patients in 2020” (p.21). 1.5 Registered Nurses Role in MAiD in Canada Registered nurses (RNs) and nurse practitioners (NPs) participate in both direct and indirect roles in the provision of MAiD. As previously suggested, nurses often spend a significant amount of direct time with their clients compared to other healthcare professionals, and therefore are often the first health care professional to receive the client’s request for MAiD (Albers et al., 2014). The Government of Canada (2020) states that nurses must follow the 8 criminal code of Canada as well as any regulations set out by the province or regulatory body. The responsibilities of the RN in British Columbia (BC) have been more closely examined in this review, as the proposed study took place at a University and College in BC. The British Columbia College of Nurses and Midwives (BCCNM) formerly known as the British Columbia College of Nursing Professionals (BCCNP), is the regulatory body for nurses in British Columbia. Currently, Registered Nurses are not responsible for the prescribing, administration, or assessment of eligibility for MAiD; these roles are only permitted for Nurse Practitioners. The BCCNP (2018) identifies five registered nursing roles in MAiD: • Providing information and education about MAiD and answering questions about MAiD-specific care • Acting as an independent witness (as per the Criminal Code) • Acting as a proxy (as per the Criminal Code) • Acting as a witness in a telehealth assessment • Aiding in the provision of MAiD (para. 2) In Manitoba, as an example of an eastern Canadian MAiD policy, possible roles have been established for Registered Nurses in regards to assistance in dying. Manitoba Nurses’ Association (2017), outlines these roles as: • Explaining the process of the medically assisted death to clients, the client’s personal supports and other health-care providers (i.e. eligibility and competency assessments, timeline, etc.); • Coordinating the time and place of the medically assisted death with the client, their personal support people, the facility and other health-care providers as necessary; 9 • Participating in the assessments for competency and eligibility with a physician or nurse practitioner; • Ensuring the medical examiner’s office is aware of the approaching medically assisted death including its location, and ensuring the letter of anticipated death is in the home as applicable; • Arranging for or providing psychosocial support to the client’s personal supports and/or healthcare providers; • Establishing and maintaining intravenous access; • Being present at the time of the medically assisted death to support the authorized health provider, the client and/or the client’s support people; • Preparing the equipment for administration. For client self-administration, the client may need aid from a nurse in preparing to take the substances but the client must be the one self-administering the substance or medication; • Preparing the body for the funeral home (if necessary); • Debriefing the client’s support people as needed; • Debriefing the staff at the facility if the medically assisted death occurred in facility; and • Providing or arranging care for the client’s support people and/or other health-care providers following the medically assisted death (p.15). 1.6 Nurse Practitioners’ Role in MAiD Canada is uniquely the first country to allow Nurse Practitioners (NPs) to prescribe and/ or administer MAiD-- making the Canadian legislation of MAiD distinctive from other countries where euthanasia has previously been legalized. The province of Quebec is the only province in 10 Canada that currently does not allow NPs to act as assessors and providers for MAiD. NPs are registered nurses who have advanced training, and work in a variety of healthcare settings across Canada. NPs have autonomous roles which include: prescribing medication/therapies, ordering tests and other diagnostics, making diagnoses, and making clinical decisions and providing treatments based on diagnosis (Canadian Nurses Association, 2020). 1.7 Conscientious Objection In addition to the legal implications surrounding MAiD, is the complex issue of exploring one’s personal standpoint and willingness to participate. The Canadian Nurses Association (CNA) framework on MAiD (2017) identifies the right of the nurse to conscientiously object to participation in MAiD. This objection, as noted in the literature, is often based on nurses’ values, moral ethics, and spiritual and religious beliefs (Albers et al., 2014; Bendiane et al., 2007; Hosseinzadeh & Rafiei, 2019; Inghelbrecht et al., 2009). For nurses who wish to conscientiously object in the participation of MAiD, it is their responsibility to inform their employer and take all steps necessary to foster a safe and compassionate transfer of client care to a different healthcare provider (British Columbia College of Nursing Professionals, 2020; CNA, 2017). 1.8 Current Legislative Controversy Since the legislation of MAiD in 2016, several areas of unresolved issues have come to light. Two of these issues include the eligibility criteria for MAiD, and the ways in which safeguards have created barriers to accessing MAiD. In regards to eligibility, the current criteria in the Canadian legislation was challenged in the ruling of the 2017 Truchon and Galdu v. Canada case, where two Quebec residents disputed that the current legislation on MAiD was overly restrictive, especially in regards to eligibility criteria. Both Jean Truchon and Nicole Gladu, who suffer from debilitating diseases, argued that the current MAiD eligibility criteria 11 was unconstitutional, as it states the person must be at end of life or death be reasonably foreseeable (Dalhousie University Health Law Institute, 2018). In the September 2019 Truchon c. Attorney General of Canada, decision reasonably foreseeable and end of life criteria were found to breach the Canadian Charter of Rights and Freedoms by the Superior Court of Quebec, and these criteria were struck down. With concerns about the potential for misuse of MAiD in Canada, safeguards were created within the Bill C-14 legislation, which outlined specific requirements for the MAiD process. These safeguards include: • Request must be in writing after the person is informed of grievous and irremediable condition • Written request must be witnessed and signed by 2 independent witnesses • 2 independent practitioners must confirm eligibility criteria are met • Patient must be made aware of all treatment options available, including palliative care, in order to provide informed consent • Practitioner must confirm request has been made freely, without undue influence • 10 clear day reflection period unless death or loss of capacity is imminent • Final confirmation and consent at time of administration or provision of the medication or prescription for self-administration (Government of Canada, First Annual Report on Medical Assistance in Dying, 2019, p.12) Since legislation, professional bodies such as the CNA have been collecting data and research on MAiD from the nursing perspective, highlighting the need to review these safeguards and requirements. The CNA (2020) Amendments and Revision of the Criminal Code of Canada 12 Provisions on Medical Assistance in Dying, has identified a number of barriers imposed specifically by the 10-day waiting period, and the requirement for two independent witnesses. The 10-day waiting period, set out by Bill C-14 as a procedural safeguard, requires that there is a clear 10-day waiting period from the day the client requests and signs the consent for MAiD, to the day when MAiD is provided. The CNA (2020) has identified several issues with the 10-day waiting period. First, they suggest that “the 10-day period is an arbitrary amount of time” (p.9) that poses a risk of clients losing capacity during this time and hence, being unable to receive MAiD as requested. Further, there is lack of clarity around the term immediately when referring to consent that is required before receiving MAiD (CNA, 2020). The second safeguard that has emerged as an issue related to the accessibility of MAiD is the requirement for two independent witnesses to sign the consent. Bill C-14 requires that two witnesses must be present at the time the client signs and dates the request for MAiD, and requires that these witnesses cannot be involved with providing care for the client, or be the owner/operator of a facility where MAiD is being provided. This poses a particular barrier in more rural and isolated healthcare and community settings. In response to the 2019 Truchon ruling in the Superior Court of Quebec, and the difficulties highlighted above, changes were put forward (Bill C-7) for parliamentary review, which included: 1. Remove the requirement for a person’s natural death to be reasonably foreseeable in order to be eligible for MAiD 2. Introduce a two-track approach to procedural safeguards based on whether or not a person’s natural death is reasonably foreseeable 13 • existing safeguards will be maintained and certain ones will be eased for eligible persons whose death is reasonably foreseeable • new and modified safeguards will be introduced for eligible persons whose death is not reasonably foreseeable 3. Exclude eligibility for individuals suffering solely from mental illness 4. Allow waiver of final consent for eligible persons whose natural death is reasonably foreseeable and who may lose capacity to consent before MAiD can be provided 5. Expand data collection through the federal monitoring regime to provide a more complete picture of MAID in Canada (Government of Canada, 2020). The Canadian expert panel on MAiD, created by the Council of Canadian Academics (CCA) (2018), explored the three outstanding issues not related to safeguards which include advanced consent, mature minors, and the exclusion of eligibility when mental illness was reported as the sole underlying condition. This panel of experts, led by former Justice of the Supreme Court of Canada Marie Deschamps and colleagues, produced three evidence-based reports on these issues. An advanced request has been defined by the panel as a request for MAiD that has happened prior to the individual losing capacity for decision-making. The panel described a mature minor as “a person under the age of majority (18 or 19 depending on the province or territory). . . and who has the capacity to understand and appreciate the nature and consequences of a decision” (CCA, 2018, p.5). Finally, the term mental disorder was used by the group to describe a client suffering from a diagnosed mental illness. Gathering evidence utilizing a variety of techniques, such as literature searches, systematic reviews, and panel deliberations, the CCA (2018) identified a number of key findings related to the three outstanding issues. In regards to advanced requests, the first key finding from 14 the panel included the issue of people potentially receiving MAiD against their will, if the need for consent immediately before the provision of MAiD is waived. Second, they identified that the issue of advanced requests would require a review of Canadian law and a review of what is considered to be consent. Third, the panel highlighted the evolving landscape of Canadian healthcare, and an ageing population, with increasing numbers of clients losing their decision-making capacity at end of life. Finally, the panel discussed that the act of prohibiting advanced requests would require a review of ethical issues of autonomy, suffering & vulnerability as it is related to loss of decision making (CCA, 2018). In regards to the issue of mature minors, the report from the CCA (2018) suggested that age alone cannot be a sole predictor of the person’s ability to make decisions related to end-of-life. Findings from the report also noted that minors have a variety of levels of decision making capacity and cognitive/emotional abilities, which makes the decision to allow minors to receive MAiD more complex. Finally, variables such as the client’s prognosis and treatment options that are available may impact the mature minor’s ability to make such decisions. Key issues regarding mental health disorders and MAiD were explored by the panel. Findings from this review included the acknowledgment that having a mental health illness does not allow the client to meet the current eligibility criteria. Issues surrounding this include the complexities associated with the autonomy of clients with mental health disorders, and the vast range of mental health disorders that can impact decision-making and self-determination. It is important to note that there was a high level of disagreement among the panel members in relation to implications for MAiD and mental health disorders, and how to approach this issue in practice, with more research being suggested in this area (CCA, 2018). 15 To further inform the proposed changes, a survey and consultation was conducted with Canadians in 2020. Responses indicated that clearly MAiD is a highly important topic to the public (Government of Canada, 2020). Online consultations were held in January and February 2020, where over 300,000 Canadians provided their opinions in regards to the proposed amendments (Bill C-7). The survey was open to the public for two weeks in January, receiving (n = 300 week one, 1400 week two) responses, which included demographics (location, age, and language) background information on eligibility criteria, questions about safeguards, questions about advanced requests, and a space for open comments. Discussions also included a variety of public and key stakeholders, healthcare professions, and regulatory bodies. The March 2020 What We Heard Health Canada report summarized the data collected from these consultations. Eight themes were identified: safeguards, MAiD through advanced requests, the right to die, concerns about expanding eligibility for MAiD, opposition to MAiD, personal experiences, the role of family, caregivers and loved ones, and specific concerns about MAiD. In regards to safeguards, participant comments revealed concerns for requiring more/multiple assessments by practitioners, which they suggested could increase the likelihood of delaying the provision of MAiD. Another concern brought forward by participants, was people living in remote locations, who could experience prolonged suffering or miss the opportunity to receive MAiD if awaiting multiple assessments. There was a disagreement among participants with regards to the 10-day waiting period, with some feeling that this reflection period could be longer, and some feeling like this was long enough and could even be shortened in some instances (Canadian Survey on MAiD, 2020). The second theme in the survey: MAiD through advanced requests, revealed 78% of participants were more inclined to support advanced requests for MAiD, so long as safeguards 16 such as reviews and practitioner follow ups were in place. A common theme was the identification that clients should not have to give immediate consent before the procedure, especially for clients suffering from diseases that could impair judgment or cause progressive mental decline. Overall, while participants did have a variety of views and comments on advanced requests, the right for the client to have choice prevailed as a key point. In regards to theme three, the right to die, the survey highlighted that a majority of participants placed a great deal of value on honouring the clients right to choose at end-of-life (Canadian Survey on MAiD, 2020). The fifth theme summarized participants concerns about expanding eligibility criteria, specifically for mature minors and clients with mental health disorders. Most of the participants were not in favor of expanding the criteria to include clients who are mature minors or who suffer from mental illness, although there were a number of comments both in favor and against (Canadian Survey on MAiD, 2020). The report clearly identifies that the issue of expanding eligibility criteria is still an ongoing and complex issue in Canadian healthcare, and possibly can be explored on a case by case basis so long as appropriate guidelines are in place. In regards to theme 5, opposition, several key findings emerged with participants identifying concerns which included, but were not limited to: concerns of MAiD being used due to it being a more cost effective option than other end-of-life alternatives, concerns of MAiD being another word and method for murder, concerns that MAiD guidelines have not been established to protect vulnerable populations, and concerns that people should not be encouraged to seek out suicide. These findings tie into the results from theme 8, specific concerns, where participants identified the need for more money to be invested into end-of-life care options, disability supports, and counselling as a top priority (Canadian Survey on MAiD, 2020). 17 Through this survey, many Canadians shared their personal experiences with MAiD. Key findings suggest that many participants’ loved ones and family members did not have access to MAiD when they wanted it, that their loved ones were suffering at end of life, and that they were unable to give consent right before the procedure, therefore were not able to access MAiD. Some participants felt that “it gave the person receiving MAID compassion and dignity” (Canadian Survey on MAiD, 2020, p.15) while being surrounded by their family and friends prior to receiving MAiD. More specific views from family members, caregivers, and loved ones (theme 7), highlighted a difference in opinion between participants, with some believing family should be directly involved in MAiD decision making, and others believing the autonomy and rights of the individual should be respected and upheld in regards to decision making (Canadian Survey on MAiD, 2020). In response to the proposed amendments, the CNA met with Health Canada and the Department of Justice, consulted with a Canadian network of nursing specialists, to provide a more comprehensive review of the amendments, and provide a summary of Nurse’s experiences with MAiD in the first two years of legislation in Canada (CNA, 2020). In regards to nurses’ experiences and perceptions with MAiD in Canada, Pesut and colleagues (2020) conducted a study with a sample of 59 nurses and nurse practitioners. Overall, nurses provided diverse and complex reflections on their experiences with MAiD, particularly in regards to ethical considerations and complexities associated with moral decision making, communication, and patient support. The CNA also drew on information from interviews with nurses, which focused more on the three key issues related to the amendment: safeguards, eligibility & advanced requests. In these consultations, 24 RNs and Licenced Practical Nurses (LPNs) were included, as well as nurses from both rural and urban areas. The CNA identified the limitation of this not 18 being an overly comprehensive report, even though it provided a diverse sample of nurses working in a variety of healthcare settings. An important recommendation to note within this study, was the identification of the importance of nurses reflecting on their own moral decision making, values and ethics. From this, the CNA recommended that nursing students should have opportunities to “engage in experiences that support their abilities to reflect on, and have conversations about, MAiD and other morally contentious practices in palliative care” (p.18). The recent COVID-19 global health pandemic has not only put a strain on progress in the legislative review of MAiD in Canada, but it also has increased the complexity of end-of-life care decisions for Canadians. Originally, an extension for the review of the proposed changes to legislation was granted until July 11, 2020, and then extended to December 2020 (Government of Canada, 2019). On March 17th, 2021 parliament passed Bill C-7, and the proposed changes to the MAiD legislation came into effect in Canada. These changes now allow request for MAiD when death is not reasonably foreseeable, which includes new and strengthened safeguards for these individuals. In regards to individuals suffering solely form mental health conditions, they will be excluded from the legislation until March 2023, allowing more time to develop policies, protocols, and recommendations (Government of Canada 2021). A perceived increase in Canadians who might be exploring their advanced directives and the possibilities of receiving MAiD, places an increased need for the timely analysis of nursing students’ attitudes and willingness to participate, in the anticipation of increased questions and conversations about MAiD. 1.9 Purpose of Study In light of the rapid development of MAiD in Canada and the central role that nurses play in the MAiD process, there is an urgent need to study Canadian nursing students’ perspectives 19 and intentions in relation to MAiD. As a first step in developing understandings of nursing students’ attitudes about MAiD, there is a need for a reliable assessment tool. Nursing students are the next generation of front-line healthcare providers, and it is imperative their attitudes and willingness to participate in such a recent and ethically charged healthcare issue are examined. The purpose of this study was to develop a survey that can be used to measure nursing students’ attitudes toward, and willingness to participate in, MAiD in the Canadian context. 20 Chapter 2: Literature Review The purpose of this literature review is to summarize current research on MAiD in regards to the attitudes of, and intentions toward, MAiD of nurses, nursing students, and medical students, and to examine instruments that exist in the literature to help inform item development and initial validation of the survey developed within this study. The findings presented in this chapter include an analysis of existing quantitative and qualitative studies and concludes with the identification of gaps in the current literature. 2.1 Databases and Inclusion/Exclusion Criteria Literature searches were conducted to inform this review using three databases accessed through the University of British Columbia Okanagan (UBCO) Library: CINAHL using EBSCO, PsycINFO using EBSCO, and Medline using ESBCO. Only articles written in English were reviewed. Key words for the search included nurses, nursing students, medical students, NPs, MAiD, euthanasia, assisted death, and end-of-life care. The legalization and legislation of MAiD is new in many countries; therefore, studies that were greater than twenty years old were excluded, no further exclusion criteria set for country. Countries from which these studies originated included: Canada, United States, Belgium, Iran, France, Turkey, Poland, New Zealand, Spain, Thailand, and Israel. These studies were conducted between the years of 2002-2020, with eight current studies conducted between the years of 2019-2020. Following this initial search, a final search was completed in 2022 to include updated literature. It is important to note that euthanasia and assisted suicide were not legal in most of these countries during the time in which these studies were conducted. This literature review has been organized into studies conducted with nurses (attitudes, intentions, and experiences), NPs (attitudes and experiences), medical students (attitudes), and nursing students (attitudes and experiences) with euthanasia, 21 MAiD, and end of life care. A separate section is included that summarizes the existing tools that have been used, the extent to which reliability and validity of these tools has been assessed, and the relevance of these tools for the context of nursing student education. 2.2 Overview of Literature Literature identified to inform this study includes a variety of quantitative and qualitative studies. Within Canada one quantitative study was identified which examined nurses attitudes toward MAiD (Freeman et al., 2019), and two Canadian quantitative studies related to medical students attitudes and their intention to participate in MAiD (Bator et al., 2017; Falconer et al., 2019). Outside of Canada, six quantitative studies were reviewed that were related to nurses and nursing students (Bendiane et al., 2007; Green et al., 2020; Hosseinzadeh & Rafiei, 2019; Inghelbrecht et al., 2009; Oliver et al., 2017; Wilson et al., 2019). Six qualitative studies were reviewed, one Canadian study examining nursing students experiences with MAiD (McMechan et al., 2019) one Canadian study exploring nursing students’ understanding and comfort with MAiD (Canning & Drew, 2022), one Canadian study examining nurses intentions (Lavoie et al., 2016), and two Canadian studies exploring nurses experiences with MAiD (Beuthin et al., 2018; Pesut et al., 2020). Seven quantitative studies (Appendix A) were used in the initial item development. 2.3 Nurses Attitudes Toward MAiD From this review four key and consistent findings in regards to nurses’ attitudes toward MAiD are evident: 1. A majority of nurses have a neutral to positive attitude toward euthanasia. 22 2. Nurses’ attitudes and perceptions of MAiD and euthanasia are often impacted by religiosity, more specifically the degree of religiosity, as well as ethical and moral principles. 3. Nurses’ demographic characteristics, other than religion, do not consistently show an impact on attitudes towards euthanasia/MAiD. 4. More studies are needed to explore the attitudes and perceptions of nurses and nursing students. While limited Canadian studies exist examining nurses’ attitudes toward MAiD, five studies outside of Canada have examined nurses’ attitudes and opinions toward euthanasia. In these studies, while nurses’ attitudes have been reported as mostly neutral/moderate to positive, it is clear that nurses’ attitudes toward MAiD and euthanasia have been, and are still, deeply conflicted and complex (Bendiane et al., 2007; Freeman et al., 2020; Green et al., 2020; Inghelbrecht et al., 2009; Wilson et al., 2019). Studies that addressed nurses’ attitudes and opinions toward MAiD/euthanasia include five quantitative and mixed-methods studies, including one Canadian study. In a national study among French district nurses, Bendiane and colleagues (2006) administered an anonymous telephone survey to a random sample of nurses to explore their opinions and attitudes toward euthanasia. Although this study is dated, and was completed in a country where euthanasia was not legal, the findings from this study offer an important perspective from a large sample of nurses (n = 602), and insight into nurses’ opinions toward the legalization of euthanasia. Strengths of this study included the use of a pilot tested survey to ensure validity, its large sample size, and response rate of 75%. From this study key findings suggested that 65% of nurses were in favour of legalising euthanasia, religious nurses were less 23 likely to favour legalisation of euthanasia, and younger nurses were more likely to have positive attitudes towards the legalisation of euthanasia. While these findings are similar to studies conducted in other countries (Green et al., 2020; Inghelbrecht et al., 2009; Wilson et al., 2019) including one in Canada (Freeman et al., 2020), a unique contribution of this study is a large representation of male nurses compared to other studies (n = 151), where 72% of male nurses agreed or strongly agreed with the legalisation of euthanasia, compared with 62% of females. Several studies regarding nurses (Green et al., 2020; Wilson et al., 2019) and physicians (Falconer et al., 2019) have not been able to clearly identify if gender has an impact on attitudes toward MAiD. Bendiane and colleagues (2006) argued for further research on the demographic influence of gender, due to the fact that in studies conducted with the general public, males tend to favor euthanasia over women. This finding was also seen in the study by Ingelbrechte and collegues (2009) where female participants were less inclined to see themselves participating in the administraiton of lethal medications to end life. In this particular study, female participants made up the majority of the sample size (n = 2909) of the total 3321 participants. In Belgium, a country where euthanasia has been legal since 2002, Ingelbrechte and colleagues (2009) conducted a nation-wide survey of nurses’ attitudes towards euthanasia with a large sample size (n = 3321) and the administration of a comprehensive questionnaire. Nurses in this study supported euthanasia at a rate of 92%. Although slightly dated, this study supports the finding that religious nurses, of any denomination, were more likely to have a negative attitude toward euthanasia. Religion as an influential variable in attitudes is also supported by several other studies (Green et al., 2020; Inghelbrecht et al., 2009) including one in the Canadian context (Freeman et al., 2020). Strengths of this study included the use of random sampling taken from a federal government database, a large sample size, and a response rate of 62.5%. This is one of 24 the first large scale studies completed in the context of a country where euthanasia had been legal for a number of years, making it more generalizable to a country such as Canada where legislation has now been in place for 7 years. In contrast to the study by Bendiane and colleagues (2006), this study reported that older nurses were more in favor of euthanasia than younger nurses, likely due to experience with clients at end of life and/or witness to client suffering. Inghelbrecht and colleagues also found that nurses were more likely to be in favor of supporting euthanasia than physicians, although the study from which the comparators with physicians were taken was completed 5 years prior. In another country where euthanasia is not legal, a more recent study conducted by Wilson, Oliver and Malpas (2017) explored nurses’ views on legalising euthanasia in New Zealand. Utilizing a cross-sectional mixed methods study, a key finding from this research was consistent with the findings from studies in France and Belgium, suggesting that 67% of nurses were strongly or mostly in favor of legalising euthanasia. The online survey included both quantitative and qualitative questions with a moderately large sample of (n = 475) nurses. It is important to note that this study included respondents with a significant amount of nursing experience with 75% of respondents having over 11 years of professional experience, 76% having at least one year of experience with end-of-life care, and 35% having over 11 years of end-of-life care experience. This variable of experience with end-of-life care has been shown by other studies to be a contributing factor affecting nurses’ attitudes toward euthanasia, and may not be a transferrable finding when applied to nursing students or nurses with limited professional experience. In a recent exploratory cross-sectional study in Canada, Freeman and colleagues (2019) investigated the attitudes toward MAiD (n = 239) of registered nurses practicing in palliative 25 care in Ontario. This particular study was conducted following legislation in Canada, and provides the most current empirical data on the attitudes of nurses in the Canadian context. Building further on previous literature that identified religion as a significant variable affecting attitudes toward MAiD/euthanasia, Freeman and colleagues explored religion in more detail, finding that the perceived importance of religion was more important than religious affiliation alone. From a palliative care perspective, 72.4% of respondents identified they agreed or strongly agreed that clients should have comprehensive palliative care prior to the consideration of MAiD, and 72% of respondents reported that they agreed or strongly agreed with accepting MAiD as part of Canadian healthcare. This study offers an important perspective from participants with expertise in palliative care--those who have the most experience with clients at end-of-life. Interestingly, this study did not find a significant difference between the attitudes of nurses with less than 20 years of experience or greater than 20 years of experience—which may suggest that experience with palliative care is a greater predictor of positive attitudes and willingness to participate in MAiD than general nursing experience alone. Limitations to this study included a low response rate of only 13.5% which may have resulted in biased responses not adequately reflective of palliative nurses’ attitudes towards MAiD. Further, this study only included respondents working in palliative care in the province of Ontario, making the findings less generalizable to other provinces in Canada and nurses working in areas other than palliative care. 2.4 Nurses Intentions Toward Involvement with MAiD in Canada Prior to legislation in Canada, Lavoie and colleagues (2016) explored Quebec nurses’ intentions and attitudes toward MAiD using a cross-sectional, self-administered questionnaire (n = 153). This study utilized a version of the Theory of Planned Behavior (TPB), which suggests 26 that an individuals’ behaviors are impacted and predicted by intention, and that intention is formed by attitudes and the subjective norm (Lavoie et al., 2016). This highlights the relationship between intention to participate and attitudes towards participation, as intention, in essence, is a behavioral goal. Variables explored in this study included: job position, number and percent of clients cared for at end-of-life, if relatives had received palliative care before end of life, years of job experience, ethical principles, religious affiliation, and other demographics such as age and gender. Consistent with studies in other countries, a key finding of this study indicated that nurses overall had a positive attitude toward MAiD and intended to practice it once legislated, with 103 nurses having a positive intention to practice MAiD, 6 having neutral intention, and 44 having a negative intention. The strongest predictor impacting nurse’s intention to practice included the subjective norm, where Lavoie and colleagues found that nurses had a more positive intention to practice when those closest and most important to them supported or agreed with them, such as family members and colleagues. A second finding from this study identified a first-time link between euthanasia and the principal of beneficence. Unlike studies in other countries that have emphasized the importance of religion, the participants’ ethical principles of beneficence, sanctity of life, and justice had a higher impact on their intention to participate in MAiD than religious beliefs. Lavoie and colleges did not find socio-demographic variables, including religion and the ethical principal of autonomy, to have an impact on intention to participate in MAiD. Limitations to the findings in the study by Lavoie and colleagues (2016) includes the lack of generalizability to other countries or provinces within Canada, a moderate to low response rate of 44%, and exploration of only whether the participants had a religious affiliation, and not their degree of religiosity, their specific religion, or their perceived importance of religion. 27 Wilson, Oliver and Malpas (2017) also explored New Zealand nurses’ intention to practice MAiD prior to legislation using these same key ethical principles of beneficence and autonomy. The contrasting findings revealed that the main reasons for nurses being in support of euthanasia in the New Zealand context, related directly to respecting a client’s rights to autonomy--especially autonomy in decision making, even when the decision failed to align with the nurse’s beliefs. Autonomy was not a significant predictor of intention to participate in the study by Lavoie and colleagues. It is important to note that the study done by Wilson, Oliver and Malpas (2017) explored only non-religious moral and ethical principles. Wilson, Oliver and Malpas (2017) further explored New Zealand nurses’ reasons for supporting euthanasia, as well as their willingness to participate and specific intentions should euthanasia become legalised. Ninety five percent of nurses in this study reported being either very or probably likely to refer a patient’s request for euthanasia to another practitioner. Other activities that nurses reported being willing to participate in, at a rate of 89% or higher, included: responding to the client with initial information about assisted dying (94%), following-up contact and support with family members (90%), supporting a clients assisted dying request (90%) and discussing assisted death with the client (89%). Activities with the lowest support included the administering the medications to end life (65-67% willing), and providing a prescription for medication to end life (43% willing). Limitations to this study included the use of self-selected sampling, and findings based in a country where euthanasia was not legal, making it less generalizable to a country like Canada. 2.5 Nurses’ Experiences with MAiD in Canada Since the recent legislation in Canada in 2016, few Canadian studies have explored nurses’ experiences with MAiD. Two Canadian qualitative studies were reviewed which 28 summarized nurses’ experiences and intentions toward MAiD thus far in the Canadian context. Results from these studies suggest a consistent theme that nurses have had both positive and challenging situations in regards to MAiD—many reporting having had deeply complex, moral, ethical, and emotional experiences (Beuthin et al., 2018; Pesut et al., 2020). Both studies clearly highlight the rapid shift that is happening for nurses and clients in Canadian health care, identifying a lack of support for both nurses and clients as a prominent challenge in providing and receiving MAiD. Pesut and colleagues explored the experiences of 59 nurses and nurse practitioners, and Beuthin and colleagues explored experiences of 17 nurses and nurse practitioners. Other common themes revealed in these studies were the importance of teamwork, leadership, and practice support for nurses in regards to MAiD, which Pesut and colleagues identified as influencing factors that affect not only the nurses’ experience with MAiD, but also their willingness to participate in MAiD. The study by Pesut and colleagues (2020) offers responses from NPs (n = 13) and nurses (n = 46), which is important for the Canadian context. This study adds important themes to Canadian research in regards to the variability in nurses’ experiences, with affecting factors including: 1. The leadership taken by influential persons within systems, 2. The presence and nature of a multi-disciplinary team, and 3. The systems’ complexity and capacity of support MAiD (Pesut et. al, 2020, p.4) The study by Beuthin and colleagues (2018) explored nurses’ experiences with MAiD in Canada, since legislation in 2016. This study utilized a narrative inquiry qualitative design, and included RNs, NPs and Licenced Practical Nurses (LPNs) from British Columbia--exploring 29 both a rural and urban sample. Similar to the study conducted with palliative care nurses in New Zealand by Wilson, Oliver & Malpas (2017), this British Columbia sample included nurses with a great deal of nursing experience (M = 23.6 years). Similar to other studies reviewed, overall accepted MAiD as part of nursing practice, however some participants expanded on the moral complexity and ethical issues of MAiD, reporting feelings of isolation and fears of judgement or doing the wrong thing. In this study, nurses’ positions were categorized as strongly opposed, in between, and strongly supportive. Respondents who were strongly opposed spoke about their religious affiliation, which is a consistent variable affecting nurses’ attitudes toward MAiD in other literature. From a qualitative perspective, this literature adds to the important discussion about nurses finding themselves in between wanting and not wanting to participate. Beuthin and colleagues indicated that nurses who found themselves questioning, or in between, did not discuss religion or spirituality as a variable affecting this uncertainty, but rather it appeared to come from ethical, moral, and legal questions. For participants strongly in favor of MAiD, comments were noted about feelings of being grateful and confident with their role in MAiD, describing their experience as positive and profound. These results may not be transferable to nurses across Canada, due to the small sample size of this study and results being from one province. A strength of this study is that it offers insight into both a rural and urban sample of nurses. Overall, these Canadian studies highlight the challenges with communication, access, and moral issues surrounding MAiD in Canada--issues that go beyond demographic variables such as religion. For nurses with less experience such as nursing students, it will be important to look deeper at the places in between being opposed to or being willing to participate in MAID. 30 2.6 Nurse Practitioners’ Experiences with MAiD in Canada NPs and their experience with MAiD have not been studied extensively, due to the fact that Canada is the first Country to allow NPs to act as assessors and providers of MAiD. In Canada, a recent qualitative study including NPs by Pesut and colleagues (2020) provides data on NPs practice experience in the context of legislated assisted death. A review article by Shiller (2017) highlights how the decision to include NPs as MAiD accessors (those who determine whether eligibility criteria have been met) is not only a positive step for appreciating and utilizing the vast scope of the NP, but it also has a unique impact in rural communities. This allows more options such as MAiD for clients in these regions, as many of these communities have a shortage of family physicians. The study by Beuthin and colleagues (2018) included NPs along with RNs and LPNs. Although this study did not separate findings between NPs and RNs/LPNs, themes are similar to Pesut and colleagues; however it is difficult to evaluate the NP specific findings. The study by Pesut and colleagues (2020) highlighted the overall challenges faced by MAiD providers and accessors, with unique findings from the NP perspective. A key theme from this study in regards to NPs, was the challenges they faced when they were the only provider in their area willing to provide MAiD, this was especially true in rural and remote locations. Another finding was the complexities of the reporting and documentation process following MAiD, with NPs describing challenges obtaining access to client files, and having to navigate a reporting process that was inconsistent and complex. NPs also spoke of the expectation required by legislation, which states that the MAiD provider, has to be one of the two MAiD accessors, which was challenging as it led to delays. Similar to nurses’ responses, NPs overall reported their view that the Canadian healthcare system posed a number of challenges to those requesting and 31 those providing MAiD (Pesut et al, 2020). A summary of these findings for nurses was explored in more detail under Nurses Experiences with MAiD in Canada. 2.7 Medical Students’ Attitudes Toward MAiD/PAD Medical students and their willingness to participate in MAiD is an important perspective to review, due to the limited literature on nursing students. Similar to the studies involving the attitudes and perceptions of nursing students, studies involving medical students have emerged, which examine a variety of influences and factors that affect attitudes and willingness to participate in MAiD. Two Canadian studies have provided empirical data on the attitudes of medical students towards MAiD. Falconer and colleagues (2019) along with Bator, Philpott, and Costa (2017) examined the views of medical students in Canada using quantitative cross-sectional descriptive designs. Bator, Philpott, and Costa (2017) conducted the first study that took place in Canada and looked at medical students’ attitudes across three years in an undergraduate medical program, while Falconer and colleagues (2019) provided the first nation-wide survey, exploring medical students’ attitudes and willingness to participate in MAiD across 15 medical schools. Key findings from the quantitative literature on medical students include three major themes. First, medical students’ values and personal morals were identified as predictors of their attitude toward MAiD (Bator et al., 2017; Falconer et al., 2019). Second, religion and spirituality were strong predictors of attitudes and willingness to participate in MAiD (Bator et al., 2017; Falconer et al., 2019). Third, studies suggest that both improved palliative care content in curriculum, and enhanced access to palliative care at end-of-life are important variables impacting attitudes toward MAiD (Bator et al., 2017; Falconer et al., 2019). 32 2.8 Nursing Students’ Attitudes Toward and Experiences with MAiD The three quantitative studies involving nursing students that were reviewed, consistently found that student opinions were strongly impacted by three main factors: their overall beliefs about death, their religious beliefs--more specifically their degree of religiosity, and their ethical principles and personal values (Green et al., 2020; Hosseinzadeh & Rafiei, 2019; Ozcelik et al., 2014). These findings are similar to the studies that explored nurses’ attitudes toward euthanasia. Within Canada, there are no known quantitative studies involving nursing students, therefore one qualitative study was reviewed. McMechan et al. (2019) explored nursing students’ experiences with MAiD, in a recent qualitative study, that included 9 senior undergraduate Canadian nursing students. Although this study was limited by its small sample size, and by participants being only from one Canadian school, this study still provides an insightful contribution to this review. From this study, four main themes emerged in regards to students and their experience with MAiD: role confusion, honoring patient autonomy, personal-professional tensions, and students’ recommendations for education (McMechan et al., 2019). These results were similar to a recently published study in 2022 by Caning & Drew. Although this data was not used to inform this research or the development of survey items due to the timing of the publication, findings from Canning & Drew suggest similar to Mcmechan at al. (2019) that nursing students do face challenges related to MAiD throughout their education. Key themes from this study that impacted nursing students knowledge and comfort with MAiD included: Prior experiences and lack of experiences relating to MAiD, personal beliefs and role challenges, and the need for knowledge (Canning & Drew). Students overall reported low levels of knowledge related to MAiD and identified the “need for more and better education regarding 33 MAiD policies and processes” (Canning & Drew, 2022, p.7). Nursing students’ experiences with end-of-life care, prior education, understanding of legal implications, prior experience, and personal values were described by students as factors affecting their overall experience with MAiD. Both studies align with the argument that clear, concise education and policies involving MAiD are necessary for healthcare providers, including nursing students, to be able to confidently engage with clients and their requests/conversations around MAiD and end-of-life care, as well as explore their own beliefs and values surrounding death and MAiD. In a recent study, involving both nurses and nursing students, Green and colleagues (2020) explored attitudes toward euthanasia, in Israel. This study provides results from a country where euthanasia is not legal, and with cultural, religious, and traditional contexts that differ from the overall Canadian context. Aims of this study included looking at attitudes toward euthanasia compared with religiosity levels, and comparing and contrasting attitudes of nurses and nursing students (n = 210). Religiosity was shown to have the greatest impact on attitudes, with groups of greater religiosity having more negative attitudes toward euthanasia. Results from this study indicate that nurses were more pro-euthanasia than nursing students. This study was limited by being completed in a country where euthanasia is not legal, and a majority of respondents identify as religious. In a slightly larger study (n = 382), Hosseinzadeh and Rafiei (2019) examined Muslim nursing students’ attitudes toward euthanasia in Iran, utilizing a self-administered questionnaire. All participants adhered to the Muslim religion and had varying degrees of clinical experience. It is important to note that in Iran, euthanasia is not only illegal, but is also described by Hosseinzadeh and Rafiei as being forbidden. Over half of the participants identified that their religious beliefs strongly impacted their attitude toward euthanasia, which is a consistent finding 34 among other studies. In regards to the student’s experience, those with increased clinical experience were less likely to favour euthanasia. It is important to note that many respondents still had neutral (41%) to positive (24%) attitudes toward euthanasia, which is overall consistent with a prior Turkish study conducted by Ozcelik and colleagues (2014) in a Muslim majority country. Limitations to this study include the varying levels of education students received on euthanasia and end-of-life care, the use of convenience sampling that may not be representative of all students in Iran, and the study being conducted in a country with a Muslim majority population. Ozcelik and colleagues (2014) utilized a descriptive study design and questionnaire to explore nursing students attitudes’ toward euthanasia in Turkey, with a sample of (n = 383) respondents. Similar to research in Iran, religious beliefs had an impact on attitudes toward euthanasia, with 38.2% of participants being against euthanasia due to their religious beliefs, 37.3% were neutral or undecided, and 27.4% found it to be ethical. These results are complicated by the varying degree of education received by respondents, and a lack of overall understanding and awareness about euthanasia and the legalities. Many respondents had not heard of the term euthanasia and a high rate of students (78.9%) reported not having had nursing education in regards to euthanasia. 2.9 Nursing Students’ Experiences with Death and End-of-Life Care Despite the lack of evidence about nursing students’ experiences with MAiD, there is some evidence about their experiences with death and end-of-life care more generally. The Canadian Nurses Association (2017) has identified that nurses in Canada have had, and will continue to have a significant role in end-of-life care, this is not limited to MAiD, and also includes natural deaths and other forms of end-of-life or palliative care. It is through these 35 interactions with clients at end-of life, that nurses and nursing students play an integral role in advocacy, assistance with decision making, and communication with clients--through these interactions they may receive requests for information about MAiD. It is imperative to explore end-of-life care in general, as MAiD is only one possible option. The CNA (2017) identified that under the nursing value and responsibility of promoting health and well-being, that “[n]urses strive for excellence in end-of-life care options including palliative care and natural death of MAID” (p.10). With research suggesting that experience with end-of-life and palliative care may have impact nurses’ attitudes and views toward euthanasia, it is important to review literature exploring nursing students’ experience with end-of-life care and death. A common theme within the literature, despite many nursing students reported having a moderate amount of clinical practice involving death and/or end-of-life care, is that they still do not feel adequately equipped from their education to provide palliative care to clients. Despite this perceived or existent gap in knowledge, and the reported feelings of student stress and anxiety, key findings from the studies suggest that students have an overall positive attitude toward providing end-of-life care. Students also reported that end-of-life care allows them to expand on their personal growth, and build therapeutic relationships with their clients (Dimoula et al., 2019; Edo‐Gual et al., 2014; Matchim & Raetong, 2018). Factors that impact students’ perceptions and experiences with death and end-of-life care include: level of education, ethics, values, support from nursing staff, acceptance with death, and personal experience with death and dying (Adesina et al., 2014; Edo‐Gual et al., 2014). These factors are similar to the findings that reveal students’ and nurses’ perceptions about MAiD. An important question brought forward by the Green and colleagues (2020) study, is the suggestion that “[t]he encounter of students as caregivers of terminally ill patients allows them to cope, 36 shape, and rethink their attitudes toward euthanasia” (p. 2). A similar trend appears to exist in the literature with nurses, suggesting that increased experience with death and end-of-life care is in fact a variable affecting their attitude toward MAiD and willingness to participate (Freeman et al., 2019). 2.10 Overview of Existing Instruments Through this review of literature, seven studies were identified that used instruments to measure nurses, nursing students, or medical students attitudes and/or willingness to participate in MAiD or euthanasia (Bendiane et al., 2007; Falconer et al., 2019; Freeman et al., 2020; Green et al., 2020; Hosseinzadeh & Rafiei, 2019; Inghelbrecht et al., 2009; Wilson et al., 2019). While it was determined that these scales could not be easily adapted for use with nursing students in the Canadian context, these studies provided validated questions on attitudes and intentions, that formed a basis for item collection and development. Item development strategies (inductive and deductive) are further described in the methods section of this study. An overview of instrument reliability, validity, and question themes used in these seven studies are attached in Appendix A. 2.11 Summary In summary, the attitudes and experiences of nurses’ and nursing students’ with euthanasia and MAiD is complex. There are a variety of factors that have been shown to impact nurses’ and nursing students’ attitudes towards, and willingness to participate in euthanasia/MAiD. From the literature, several influences emerged such as religiosity, values and beliefs education, level of experience with end-of-life care, practice policies, legislative language, and social factors such as opinions and attitudes of family members and colleagues. Limitations of the studies reviewed include: the lack of generalizability to larger populations of nurses or nursing students, the low response rate of some studies, challenges with 37 recruitment, risk of selection bias due to convenience sampling, lack of detail in regards to sample size calculation, and overall a low number of both quantitative (n = 3) and qualitative studies (n = 1) involving nursing students, especially in the Canadian context. Many studies were conducted in countries where MAiD is not legal and where there are a greater percentage of religious participants. It is also important to note that issues such as euthanasia and MAiD are ethically charged, which can pose as a barrier for some respondents (Freeman et al., 2020). This literature review confirms that nurses’ and nursing students’ attitudes and perceptions of MAiD are based on a number of factors including: ethical principles, degree of religiosity, lack of clarity on role and legislation, lack of leadership and support in the practice setting, and their level of experience with palliative care and euthanasia. In regards to nursing students, two studies suggest that they are overall less likely than nurses to see themselves participating in MAiD (Green et al., 2020; Hosseinzadeh & Rafiei, 2019). With limited quantitative empirical data available, further exploration of nursing students’ attitudes toward MAiD in Canada, through the development of a measurement scale is needed to enhance and expand on this body of existing literature. 38 Chapter 3: Methods With no known instrument designed to investigate nursing students’ attitudes toward, and willingness to participate in MAiD in the Canadian context, the aim of this study was to develop a survey that can be utilized to measure these attitudes and intentions. This chapter will describe theoretical underpinnings related to survey and questionnaire development, the study design, participants, recruitment procedures, data collection and analysis, and ethical considerations. The study methods are organized into three distinct phases: (1) item generation, (2) use of the Delphi method with faculty for item content validity, refinement, prioritization, and and (3) face validity testing through cognitive interviews with students for survey refinement. 3.1 Survey and Questionnaire Development Surveys have long been developed and utilized in health and social sciences as a form of data collection for research. While the exact origin of surveys in the health and social sector is impossible to date and locate, Johnson (2015) suggests that a precursor to survey utilization in health sciences may have been fueled in the nineteenth century, following the industrialization period, with further advances following World War II. Check & Schutte (2012) define survey research as “the collection of information from a sample of individuals through their responses to questions” (p. 2). Surveys offer both a versatile and efficient method for data collection, especially when they are built on existing instruments (Check & Schutte). Although survey-based research has the potential to encounter a number of different errors during both the creation and implementation phases, strategies can be utilized by the researcher to help minimize these risks, beginning with the survey development process. Limitations to survey development include problems that can lead to what Check & Schutte (2012) describe as errors of observation, which can be caused from the question wording, the 39 question presentation, the question characteristics, and techniques used by the interviewer. To avoid these survey errors, Check & Schutte highlight strategies that can be used by the researcher during survey development such as cognitive interviews and expert panels. Following these recommendations, both of these strategies were used in the development of this survey. 3.2 Relevant Concepts and Conceptual Definitions Surveys, as stated by Check & Schutte (2012), should be produced based on a clear identification of the construct of interest and research problem. The constructs of interest (attitudes of nurses towards MAiD and willingness to participate in MAiD components) are both well represented in the literature, and have been explored by the existing instruments reviewed. The definition of the concept attitude has been widely explored and analyzed. Altman (2008) conducted a concept analysis, to summarize that "attitudes are (a) a mental state-conscious or unconscious; (b) a value, belief, or feeling; and (c) a predisposition to behavior or action” (p.149). Puchta & Potter (2004) further expand on core features of attitude to highlight that they are observable through verbal and behavioral actions, they are oftentimes static, and they are located within the individual. Furthermore, De Vaus (2013) notes that attitudes are complex, and may be measured best with a large variety of questions. The aim of the survey was to use already developed items about health care providers and students’ attitudes towards and willingness to participate in MAiD, as evidenced by the most current research in the literature review, and apply these concepts specifically to nursing students. However, it is important to note that this method did not capture unconscious attitudes, or attitudes expressed through verbal or behavioural interactions. Rather, it focused on self-reported values, beliefs, feelings, and predispositions to action. 40 Questions that have aimed to assess the attitudes of nurses and physicians toward MAiD/PAD have been utilized in a number of existing instruments; two in the Canadian context (Falconer et al., 2019; Freeman et al., 2020). In the study by Falconer et al. (2019) a 52-item survey was administered to physician participants, which contained a variety of multiple choice, select all that apply, short text, and yes or no questions. Question categories for this study included questions on socio demographics, medical school and training, professional outlook, topical questions about assisted death, and clinical scenarios on opinions toward assisted death. In the study by Freeman et al. an instrument was developed to assess the attitudes of palliative care nurses toward MAiD, called the Nurse Attitudes Toward Medical Assistance In Dying Scale (NATMS). This instrument consisted of a 24 question survey, each rated on a 5 point Likert scale. This survey contained questions on nurses’ attitudes towards MAiD, as well as knowledge questions based on MAiD. Both the Falconer and Freeman study were foundational in developing items during the inductive phase of this study. Measuring attitudes is complex, and goes beyond simply asking the respondents to say whether they are willing to participate in MAiD or not; a variety of levels of participation need to be explored in more detail. Magelssen et al. (2016) highlight the importance of considering the structure of questions that ask about attitudes, especially in the controversial and highly complex topic of assisted death. This framing context described by Magelssen et al. includes not only wording the question appropriately, but also examining the context in which the question falls--what precedes it and what follows it, referred to by the authors as the question order affect. It is imperative that the researcher is mindful to not unintentionally reduce or increase differences in responses due to the order or context of the question. To assess these complex attitudes, development of the survey questions in the study required consideration of all of these factors. 41 Willingness to participate in MAiD has been measured by existing surveys, specifically by Falconer et al. (2019), who used a yes or no statement question asking participants if they would be “willing to provide physician assisted dying (PAD), or generally participate in the process of PAD, under a legal framework that permits it” (p.3). Aside from drawing from data and concepts from existing surveys, an additional method that was utilized in this thesis to refine and identify concepts was the use of the Delphi method to develop consensus around relevant survey items from a group of nursing faculty. Participation in MAiD in the Canadian context is a complex paradigm, and it is distinct from any other country for the reason that nurses have the choice in Canada to participate or not in MAiD. However, when looking at participation among nurses, there are varying levels and types of involvement. Participation ranges from the observation of a medically assisted death, to the actual administration of the lethal substance by a Registered Nurse (RN) who is also a Nurse Practitioner (NP) and is trained as an assessor and provider. The CNA (2017) states that nurses need to check the guidelines outlined by their provincial regulatory bodies and health authorities for specific roles and responsibilities associated with MAiD. These roles may include inserting an intravenous line for the medication, providing nursing care to the client while the medication is being administered by the NP or medical practitioner, interacting with the MAiD team, and in some provinces acting as a witness for consent, documenting care provided, and providing care of the deceased following MAiD (CNA). More specific nursing interventions related to the participation of MAiD in Canada are well highlighted by the Medical Assistance in Dying guidelines for Manitoba Nurses (2017), as previously outlined in the background section of this study. 42 To gain a deeper understanding of nursing students’ willingness to participate, the survey design needed to explore the varying levels and types of participation that are available in Canada. Questions related to nursing students’ attitudes and willingness to participate were created, delineated, and evaluated through the processes outlined below in the study design. It was imperative to include the numerous levels and types of participation noted above, especially in the unique Canadian context. 3.3 Study Design The goal of this study was to design a survey that can be used to examine nursing students’ attitudes toward and willingness to participate in MAiD in the Canadian context. This study has been guided by the principles brought forward by Streiener, Norman & Cairney (2015), Hinkin (1995), and De Vaus (2013) to develop behavioral health surveys. De Vaus highlights that survey development can include in-depth interviews, observations, questionnaires, and analysis. The design used to develop this survey followed a three phase process of: item development from the literature, a Delphi method, and a cognitive interview focus group. 3.4 Phase One: Item Development Deductive and inductive approaches were used in the development of survey items, which Hinkin (1995) describes as effective methods for item generation. These approaches are further supported by Boateng et al. (2018), suggesting that combining these two methods is considered best practice in survey development. These item generation techniques led to a modified Delphi process, where instead of traditionally using the first round to gather qualitative data, the researcher presented a list of items pre-generated through a review of current quantitative and qualitative literature, and existing surveys (Keeney, Hasson & McKenna, 2011). 43 3.4.1 Item generation using deductive and inductive approaches Deductive approaches refer to item generation techniques (Hinkin, 1995). For this study, a list of items was generated by the primary researcher through a review of similar surveys in the literature. Surveys designed for nurses and nursing students (Bendiane et al., 2007; Freeman et al., 2020; Green et al., 2020; Hosseinzadeh & Rafiei, 2019; Inghelbrecht et al., 2009; Wilson et al., 2019) and physicians (Falconer et al., 2019) were identified in the literature to inform the initial development of survey items. Existing surveys were reviewed and survey questions were categorized by core concepts related to MAiD, by type of question, and by the response format. Attitudes toward MAiD, and willingness to participate are the content domains within the study, and the survey was designed to incorporate both of these concepts. Then, additional items were generated inductively based upon the Canadian qualitative literature, regulatory frameworks, and relevant theories related to nursing care and MAiD. Items were developed according to specific content areas. De Vaus (2013) categorizes question content by four distinct types, which include beliefs, knowledge, attitudes and attributes. This study explored three of the four, including questions based on knowledge, attributes and attitudes. De Vaus further describes approaches to each of these question content categories. In regards to questions related to socio demographics, De Vaus recommends asking attribute questions, which seek to obtain information about characteristics related to the respondent. Questions related to attitude are well represented in the studies reviewed, which include questions about the respondent’s views on MAiD or PAD. Common themes affecting nurses’ attitudes toward MAiD in the Canadian study by Freeman et al. included: experience in palliative care, personal importance of religion/faith, and professional importance of 44 religion/faith where the five-point Likert scale was used. Knowledge questions were developed based on current MAiD legislation, policies, regulatory frameworks, and in close consultation with the research team. Case studies were developed in the context of the current MAiD legislation, and took the proposed legislative changes into consideration. Case studies were developed in consultation with the research supervisor who has expertise in MAiD in the Canadian context. All content categories that exist in the studies and surveys identified were reviewed for inclusion in the pool of initial items. Phase One resulted in a pool of 56 items including four case studies with three associated questions in each. All items were derived from existing surveys or developed to elicit responses from nursing students in relation to the unique Canadian landscape. Items were then prioritized and refined using the Delphi method in Phase Two of the study. 3.5 Phase Two: Delphi Method for Item Prioritization and Refinement The Delphi method is recommended by Boateng et al. (2018) as an effective model for prioritizing and refining survey items. Authors suggest using it prior to validity testing, which happened in the Phase Two of this study to assess content validity through the Delphi with faculty, and Phase Three to assess face validity through the use of cognitive interviews (Adler & Ziglio, 1996; Streiener, Norman & Cairney, 2015). The Delphi method uses experts, in this study nursing faculty with familiarity with MAiD, to review the initially generated list of items and prioritize, accept, reject, or adapt each item. This process occurred in two rounds, allowing for prioritization of items (Adler & Ziglio, 1996). After two rounds consensus had been achieved. In this study, consensus was achieved when 75% of respondents agreed upon a particular course of action, which Keeney, Hasson and McKenna (2006) suggest is an acceptable level, even though no formal scientific guidelines for this exist. 45 3.5.1 Advantages and limitations Advantages to using the Delphi method include having access to knowledge and opinions of the experts in the field, its usefulness in obtaining content validity, and the ability to align the questions with the target population (Adler & Ziglio, 1996). Two important limitations of the Delphi method include the lack of universal methodological guidelines, as well as issues that can arise around participant attrition (Keeney, Hasson & McKenna, 2006). Other limitations to the Delphi method include the challenges that may arise if there is disagreement amongst the panel, and if there is a limited range of responses and diversity within opinions (Streiener, Norman & Cairney, 2015). To avoid these challenges with the Delphi method, it is suggested by Meijering, Kampen & Tobi (2013), that a clear consensus measurement index be decided on and used during each round, and that the researcher is clear on what is to be measured. Keeney, Hasson & McKenna (2011) highlight that for a successful Delphi method, it is imperative for the researcher to not only have a clear understanding of the process and data analysis requirements, but also “possess excellent interpersonal and administration skills” (p.44). 3.5.2 Participants and sample Check & Schutte (2012) note that experts for item refinement and prioritization can include experts in the specific field of study and methodologies, as well as experience with questionnaire design. A panel of 10 Selkirk College and UBCO nursing faculty were recruited by email as participants to prioritize and refine the items. Boateng et al. (2018) suggests having at least 5-7 experts to avoid bias, increase robustness, and cover more areas of expertise. The number of experts was increased to 10 to improve content validity by addressing the above noted suggestions. Meijering, Kampen & Tobi (2013), highlight the importance of having enough experts to increase robustness, although caution that too large of a sample can eventually 46 decrease agreeance. Similarly, a study exploring the stability of response characteristics of a Delphi by Akins, Tolson & Cole (2005) shows that “experts who have similar training and general understanding in the field of interest allow for effective and reliable utilization of a small sample from a limited number of experts” (p.10). Inclusion criteria for experts included nursing faculty members at both UBCO and Selkirk College with experience in nursing education as well as expertise in MAiD. Three specific characteristics that were used for inclusion criteria, which were developed based on recommendations from Keeney, Hasson & McKenna (2011) included: (1) participant must have three years of post-graduation experience in nursing education, (2) participant must be currently employed as nursing faculty, and (3) participant must be willing and able to participant in the Delphi method. Participants self-selected based on familiarity with the content, as there was not requirement surrounding expertise in MAiD. Detailed participant characteristics are presented in chapter 4. 3.5.3 Data collection Round One The first round of the Delphi method was to identify item relevance, identify if the items gathered through the deductive approaches were important or not to include, as well as to generate new items (Streiener, Norman & Cairney, 2015). The survey on average was expected to take participants one hour to complete. The researcher anticipated for a two to three week turnaround between rounds, sending an email reminder to participants at the two week mark. In this round, items from Phase One that had been categorized by the primary researcher were provided to the faculty panel via a digital survey format on the UBC Qualtrics platform. Participants were provided with instructions, and asked to review the list of items and determine if each item should either be: (1) included, (2) excluded or (3) adapted for the survey. If needing 47 to be adapted, faculty were asked to provide rationale and suggestions for adaptation through the use of an open text box. At the end of the survey faculty were further prompted to add additional items that should be included in the survey, or make suggestions or adaptations to the Likert scales. Streiener, Norman & Cairney suggest that in the first round and first draft, as many responses as possible should be collected and considered. Items that reached a level of 75% consensus for inclusion and adaptation were retained for the second round and presented to the panel. New items were categorized and reviewed by the researcher and research committee, and presented to the panel of experts in round two. 3.5.4 Data collection Round Two Round Two utilized a similar process as the first round to further refine questions; however, no new items were generated in this second round. Items that reached a 75% consensus in Round One were re-presented to the panel. Items that required adaptation, or were identified as new items in Round One, were reviewed by the research committee and presented to the panel as new items in Round Two. Participants were asked to review items again, including new items, to determine if each item should either be: (1) included, (2) excluded or (3) adapted for the survey. A new process for Round Two included an item prioritization activity, where participants were then asked to rate the level of importance of each question, based on a 5 point Likert scale (low to high importance), which De Vaus (2013) states is helpful for increasing the reliability of responses. Items that reached a 75% consensus on importance were retained, and reviewed by the research committee. It was determined after Round Two that consensus was met, and a third round was not needed. 48 3.5.5 Data analysis After each round of the Delphi, data analysis was completed in Microsoft Excel and SPSS statistical software version 28.0. Content analysis was utilized for additional items generated. Each survey item was reviewed for level of consensus, and level of importance. A final draft was created based on consultation with the research committee. The final list or survey items was then brought forward to student participants in the cognitive interview process during Phase Three (Streiener, Norman & Cairney, 2015). Measurement scales were developed based on the final list of items created and refined from the Delphi prioritization process. Existing surveys in the literature have utilized multiple choice style answers for questions related to socio demographics. For questions based on attitude and willingness to participate, 5-point Likert scales were utilized as a level of measure. Similar Likert scales have been utilized by existing validated surveys in the literature (Bendiane et al., 2007; Falconer et al., 2019; Freeman et al., 2020; Inghelbrecht et al., 2009), and is recommended over the use of a 2-3 point Likert scale to ensure reliability (Boateng et al., 2018). Krosnick & Fabrigar (1997) recommend a 5 to 7-point Likert scale, which they also suggest are more reliable than a 2-4 point scale. Categorical questions included socio demographic questions such as sex, gender, and age, while ordinal variables included questions that measure level of agreement, through the use of Likert scales (Streiener, Norman & Cairney, 2015). Netemeyer et al. (2003) suggests that word choice, word clarity, designated end points, and a neutral middle point are important features of a Likert scale. Response anchors for the Likert scales were taken from the recommendations of Vagias (2006), and chosen for each question in consultation with the research committee. 49 Level of importance for each question was also rated using a 5 point Likert scale (1=very unimportant, 2=somewhat unimportant, 3=neutral, 4=somewhat important, and 5=very important). The 5 point Likert scale was chosen for this analysis due to its ease of construction and ease of use, to avoid participant fatigue when rating a high number of questions, and its recommended use along-side the Delphi method. The literature is conflicting when it comes to deciding on how many points to use in a Likert scale for this purpose. Similar studies have utilized both 5 and 7 point Likert scales, while some studies have also used the 4 point scale, such as in the study by Akins, Tolson & Cole (2005) and a more recent study by Vogel and colleagues (2019). Using a 4 or 5 points Likert scale has been a long standing controversy and debate, as to whether the Likert scale data should be treated as an ordinal scale or interval scale in regards to analysis. Knapp (1990) suggests that “for a scale to be at the ordinal level of measure, the categories comprising the scale must be mutually exclusive and ordered” (p.121). Using an interval level of measure would have been less appropriate choice for this study due to the fact that it is difficult to assume that intervals between scale points are equal, thus eliminating the ability to use mean and standard deviation (Jamieson, 2004). After reviewing similar studies and expert recommendations, the median was used to rate the level of importance for each question, which has been identified in the literature as an effective way to assess level of agreement when using Likert scales in the Delphi method (Heiko, 2012; Hsu & Sandford, 2007). 3.6 Phase Three: Cognitive Interview Focus Group Once the survey was developed and adapted following both rounds of the Delphi method, it was reviewed with a sample of nursing students using cognitive interviewing through a virtual focus group session (Willis, 2005). The cognitive interview focus group was exploratory in 50 nature, and included focused discussions with student participants in the BSN program at Selkirk College. The goals of the cognitive interview focus group was to explore if each question was being correctly interpreted by respondents, to see if respondents answered the questions consistently, as well as to see how well respondents understood the readability and organization of questions (Puchta & Potter, 2004). 3.6.1 Advantages and limitations Advantages to cognitive interview focus groups when developing survey items include efficiency, group participation, a collection of a wider range of viewpoints, item clarity, ensuring adequate responses, and the identification of questions that might be problematic (Boateng 2018; Streiener, Norman & Cairney, 2015). Challenges to cognitive interview focus groups include being led by an untrained interviewer, and possible language and cultural barriers or differences (Puchta & Potter, 2004). Along with assessing items for content validity, Streiener, Norman & Cairney provide additional considerations when revising items based on: interpretability, ambiguity, double-barreled questions, jargon, value-laden words, positive and negative wording, and length of items. 3.6.2 Participants and sample Boateng et. al (2018) recommends 5-15 participants for a cognitive interview focus group, similar to Streiener, Norman & Cairney (2015) who suggest a sample of at least 5 participants for effective interviews. This study recruited five nursing students in their final and fourth year of the BSN program in the 2020/2021 academic year, with no further exclusion criteria. This was a sample with similar characteristics to the target population of the future survey. Students in their fourth year of studies were chosen as they have had an introduction to MAiD. The Selkirk College fourth year facilitator was contacted, and asked to share the 51 information letter and research consent form by email with students. Students were asked to respond by email if interested. A total of five nursing students responded and returned a digital copy of the signed consent form. Data from the cognitive interview focus group was collected through a one-time synchronous session using the Zoom platform. The session was recorded, allowing for a thorough investigation of participants responses. 3.6.3 Interview guide development and data collection for cognitive interview focus group To address the challenge of having an untrained interviewer conduct a cognitive interview, an interview guide was developed in consultation with the research supervisor, which was used to lead the discussions. Discussions with students about survey items considered the use of open and closed ended questions, the order of questions, the layout of questions, appropriate survey instructions, and the overall length of questionnaire. The cognitive interview focus group included discussions with participants, as well as concurrent and retrospective verbal probing techniques. Willis (2005) recommends these two main processes, which were both utilized in the study. The application of the think aloud technique in interviewing to assist with survey question development, is a common practice, and has several advantages. These advantages are described by Willis as requiring a minimally trained interviewer, having an open-ended format, and finally the avoidance of interviewer-imposed bias. To complete this process, survey questions were sent to participants as the interview began, so that each participant had a copy to read to themselves. Each participant had time during this review to think aloud, by verbally expressing their ideas on each question as they completed the proposed survey. In regards to the think aloud technique, Willis recommends, in 52 addition to an audio recording, that the interviewer take written notes as the participant is exploring the question aloud. In addition to the think aloud technique, the probing technique can be used to target specific responses to gain more information or detail (Willis). Verbal probing techniques were utilized from the framework provided by Willis, including a number of different techniques such as: paraphrasing, cognitive probing, general probing, and specific probing. Willis describes several advantages to using verbal probing, which include having the interviewer maintain structure and control of the interview, as well as the ease in which probing questions can be asked without changing the overall context of the interview or survey questions. 3.6.4 Data analysis for cognitive interview focus group The cognitive interview focus group was recorded and reviewed by the primary investigator. Willis (2005) describes two steps in the analysis of interviews: categorizing what is found from interviews, and constructing concise statements based on steps for data reduction. Formal recommendations from Willis were used to guide interview data collection and analysis. Categories that were explored included: the clarity of questions, the meaning of the questions, emotions evoked by the questions, and any concerns that came up for the question. Written notes were compared with the audio recording. The final survey was then adapted and refined based on the results of the cognitive interview findings. Items that lacked clarity or were deemed confusing by participants were reviewed, and modifications to wording and clarity were made in consultation with the research team. 3.7 Ethical Considerations and Confidentiality Ethical approval was obtained through the Research Ethics Boards at both UBCO and Selkirk College prior to commencing this study. The primary researcher completed the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans Course on Research 53 Ethics (TCPS 2: CORE) course. Participants of the Delphi method and cognitive interview groups were provided with an email invitation letter which explained the purpose of the study and the requirements for participation. The faculty invitation letter was sent by the chair of health and human services, and the student invitation letter was sent by the 4th year BSN facilitator to avoid the researcher having direct participation in the invitation process. Persons who agreed to participate were provided with a consent form to review via email. At the beginning of the Delphi survey, faculty participants were asked to provide consent on the first page of the survey, a digital copy of the consent form was embedded in a link on the first page of the survey, and consent was implied by the participant clicking ‘yes I consent’ and by starting the survey. Student participants were emailed a copy of the consent form which they filled out using an electronic signature, and emailed back to the researcher prior to the interviews. Students were also provided with an oral script at the beginning of the virtual session outlining the consent process. Participants were provided with an opportunity to ask questions prior to participating in the Delphi method and cognitive interview focus group. In regards to confidentiality, a number of measures were taken, as it is the role of the researcher to protect and respect the confidential nature of the information of participants (Coughlan, Cronin & Ryan, 2007). Students and faculty were informed of how their information would be securely stored. Data was analyzed and stored using a password protected computer of the primary researcher, data was de-identified, and was stored separately from consent forms. Names of participants were not saved and all faculty participants names and IP addresses remained anonymous. Rounds of the Delphi remained anonymous and IP addresses were not recorded in the survey data to further protect participant anonymity. 54 3.8 Knowledge Translation and Dissemination The aim of this study was to develop and validate a survey that can be utilized in the future to collect data on nursing students’ attitudes and willingness to participate in MAiD. Practically speaking, this study can be added to the growing body of research on MAiD in the Canadian context, and can also inform nursing curriculum from an educational perspective. Once the survey is administered at a later date to the target population, dissemination of the results of this study will also be an imperative step in sharing the outcomes. Plitchta & Kelvin (2013) suggest that dissemination is one of the most important components of the research study. In regards to education on MAiD, this sharing of information can assist the sites in reviewing and streamlining education to better understand variables that impact students’ attitudes and willingness to participate (Plitchta & Kelvin, 2013). This is an important first step as nursing education has been shown to have a powerful impact on students perspective towards MAiD and end of life issues (Green et al., 2020). Results will be shared with educators and students at both sites of the proposed study (UBCO and Selkirk College), as well as their respective nursing partner curriculum sites through a conference style presentation. Formal publishing of this study in the future will allow for a wider dissemination of results through nursing education journals. 55 Chapter 4: Results In this chapter the key findings and results from the item generation phases, Delphi method with faculty, and cognitive interview focus groups with nursing students will be presented. The results have been categorized into three phases: (1) Item Generation (2) Delphi Process, and (3) Cognitive Interview Focus Group. Phase Two is divided into parts, 2.1 Delphi Round One, and 2.2 Delphi Round Two. 4.1 Phase One: Item Generation The Phase One item generation resulted in a total of 56 questions from 11 published sources, including four case studies. Appendices A and B provide data extraction tables for the quantitative and qualitative studies from which these items were derived. The survey contained five main categories. Question categories included: (1) Socio-demographic questions (2) End-of-life care questions (3) Knowledge based questions about MAiD (4) Comfort and willingness to participate in MAiD questions (5) Case study questions 4.1.1 Case studies The case studies included four scenarios: (1) MAiD and a mature minor, (2) MAiD using an advanced request, (3) MAiD when psychiatric illness is underlying condition, and (4) MAiD when death is not reasonably foreseeable. Once the content for each case study was developed, three associated questions were created to accompany all four case studies. These questions included the student’s comfort level with the patient’s right to make the decision to choose MAiD, comfort level with assisting the physician/NP to administer MAiD, and comfort level 56 providing MAiD in the future if the student would be a qualified NP. The four case scenarios presented in Round One were as follows: (1) You are working on a pediatric oncology unit and a 16-year-old patient that you have been working with over the last three shifts, who is receiving treatment for terminal and incurable cancer, asks to receive MAiD. (2) You are working in an acute psychiatric unit and a client who was diagnosed ten years ago with severe depression and schizophrenia requests MAiD. The client has no other medical conditions. The client reports being no longer able to cope with their mental health condition and reports daily suffering with no relief from medication. (3) You are working in home care, and a 48-year-old client with multiple sclerosis (MS) makes a written request to their physician for MAiD. The client reports increasing pain and a significant decrease in quality of life in the last year. Currently their death is predicted to be years in the future. (4) You are working with a client on the surgical unit who had a total hysterectomy for Stage 4 cervical cancer, and is now four days post-operative. A scan has found metastases on the patient’s brain. The patient makes an advanced request for MAiD, fearing they will lose capacity to make a decision once the metastases progress. 4.1.2 Survey questions Two Canadian studies that contributed greatly to the item generation process was the study by Falconer et al. (2019) which examined the attitudes of medical students to physician assisted death (PAD), as well as the Freeman et al. (2019) study which explored palliative care nurses’ attitudes toward MAiD. These studies utilized validated surveys for the Canadian context, therefore question re-wording was minimal. Of the total survey questions, 9 were 57 developed (excluding the case studies) specifically for the Canadian context and based on the current MAiD legislation. A total of five questions were inductively developed specifically for nursing students, by adapting questions that were used for nurses and/or physicians. In addition to the Falconer & Freeman studies, five more surveys from studies were utilized and contributed to the creation of these questions (Bendiane et al., 2007; Green et al., 2020; Hosseinzadeh & Rafiei, 2019; Inghelbrecht et al., 2009; Wilson et al., 2019). Response options for the survey were also constructed during this stage and included: open text, categorical, yes/no, and Likert scales. Of the sociodemographic questions, age, sex and gender were based on a categorical response. The country where the participant was primarily raised in was an open text box, and province/territory born in was a drop-down choice menu. Questions on religion and spirituality were measured on a 5-point Likert scale. The end-of-life survey category included 8 questions with yes/no response options. For knowledge-based questions on MAiD, a combination of yes/no and 5 point Likert scales were used. The remainder of the survey (willingness to participate in MAiD questions and case study questions) all utilized a 5-point Likert scale. As noted in Chapter 3, Likert scales were developed for each question based on recommendations from Vagias (2006). Four surveys from the literature also utilized similar 5-point Likert scales. The full version of the survey generated from Phase One can be found in Appendix C. Table 1 provides an overview of the items used in Phase One and their origin from the literature. 58 Table 1 Survey for Delphi Round One Survey Questions Origin of Questions 1. Please enter your age in years Bendiane et al. (2006); Falconer et. al (2019); Freeman et. al (2019); Hozzeinzadeh & Rafiei (2019); Inghelbrecht et. al (2009), Lavoie et. al (2016); Pesut et al. (2020) 2. What sex you were assigned at birth? Falconer et. al (2019); Inghelbrecht et. al (2009); CIHR guidelines 3. What gender to you identify as? Bendiane et al. (2006); Freeman et. al (2019); Green et. al (2020); Pesut et al. (2020) 4. Please enter what country you were born in Falconer et al. (2019) 5. Please enter what province or territory you were born in if you were born in Canada Falconer et al. (2019) 6. What is your religion or faith expression? Falconer et al. (2019); Freeman et. al (2019); Green et. al (2020); Lavoie et. al (2016); McMechan, Bruce & Beuthin (2019); Pesut et al. (2020) 7. Religious attendance (days per week) Falconer et al. (2019); 8. Importance of religion, spirituality or faith Inghelbrecht et. al (2009); 9. Have you cared for a patient at end-of-life? Bendiane et al. (2006); Freeman et. al (2019) 10. Have you cared for a patient at end-of-life in the last 12 months? Green et. al (2020); Inghelbrecht et. al (2009) 11. Have you discussed end-of-life issues with a patient? Bendiane et al. (2006); Inghelbrecht et. al (2009) 12. Have you attended or observed a death in the practice setting? McMechan, Bruce & Beuthin (2019); Lavoie et. al (2016); Falconer et. al (2019) 13. Have you cared for a patient who has requested MAiD? McMechan, Bruce & Beuthin (2019); Beuthin, Bruce & Scaia (2018) 14. Have you cared for a patient who has received MAiD? McMechan, Bruce & Beuthin (2019); Beuthin, Bruce & Scaia (2018) 15. Have you been in the room when a patient received MAiD? McMechan, Bruce & Beuthin (2019); Beuthin, Bruce & Scaia (2018) 59 Survey Questions Origin of Questions 16. Did your nursing education include content on MAiD? Falconer et. al (2019); Ozcelik et. al (2014); McMechan, Bruce & Beuthin (2019) 17. What is your current level of knowledge around the legal responsibilities of the Registered Nurse in MAiD? Freeman et. al (2019) 18. Do you feel like you have enough information to take part in a discussion about MAiD with other nursing students ? Freeman et. al (2019) 19. Do you feel like you have enough information to take part in a discussion about MAiD with patients? Freeman et. al (2019) 20. Are you aware of the federal legislation on MAiD Bill C-14 in Canada? Falconer et. al (2019), Canadian MAiD legislation 21. Are you aware of the current eligibility criteria for MAiD in Canada? Freeman et. al (2019), Canadian MAiD legislation 22. Are you aware of the safeguards in place within the MAiD legislation? Canadian MAiD legislation 23. Are you aware of the recent legislation changes for eligibility criteria (C-7) as of March 2021 for MAiD in Canada? Freeman et. al (2019); Canadian MAiD legislation 24. I find it easy to discuss MAiD Freeman et. al (2019) 25. I am in support of Nurse Practitioners providing MAiD Freeman et. al (2019) 26. I am in support of Physicians providing MAiD Falconer et. al (2019); Freeman et. al (2019) 27. A person has the right to decide on their own death Freeman et. al (2019) 28. Patients should have access to palliative care before accessing MAiD Freeman et. al (2019) 29. My attitude towards MAiD is conflicted Freeman et. al (2019) 30. I accept MAiD as part of Canadian healthcare Freeman et. al (2019) 31. My view on MAiD is impacted by my religious or spiritual beliefs Falconer et. al (2019); Freeman et. al (2019) 32. My undergraduate nursing education has shaped my views on MAiD McMechan, Bruce & Beuthin (2019) 60 Survey Questions Origin of Questions 33. I feel prepared to care for a client requesting MAiD McMechan, Bruce & Beuthin (2019); Freeman et. al (2019) 34. I feel as though I know what conscientious objection is Pesut, Thorne & Greig (2019); Canadian MAiD legislation 35. I believe nurses have the right to conscientiously object to participating in MAiD Pesut, Thorne & Greig (2019), Canadian MAiD legislation 36. I know the steps to follow to declare conscientious objection Pesut, Thorne & Greig (2019); Canadian MAiD legislation 37. I am comfortable having conversations about MAiD with patients Freeman et. al (2019) 38. I am willing to start an intravenous (IV) for a patient receiving MAiD Pesut, Thorne & Greig (2019) 39. I am willing to care for patients and their families during the MAiD process Freeman et. al (2019) 40. I am comfortable caring for the patients’ body after a MAiD death Beuthin, Bruce & Scaia (2018) 41. I am comfortable working with families during the bereavement period following a MAiD death McMechan, Bruce & Beuthin (2019) 42. I am willing to assist the NP or physician to administer a MAiD death Freeman et. al (2019) 43. I am willing to become a MAiD assessor in my future career Falconer et. al (2019) 44. I am willing to become a MAiD provider in my future career Falconer et. al (2019) 45-47. Case study #1: MAiD and a mature minor Canadian MAiD legislation (proposed changes) 48-50. Case study #2: MAiD when psychiatric illness is underlying condition Canadian MAiD legislation (proposed changes); Freeman et. al (2019) 51-53. Case study #3: MAiD when death is not reasonably foreseeable Canadian MAiD legislation (proposed changes) 54-56. Case Study #4: MAiD using an advanced request Canadian MAiD legislation (proposed changes) 61 4.2 Phase Two: Delphi Survey 4.2.1 Phase 2.1 Delphi Round One In Round One of the Delphi method, faculty participants were sent the initial list of survey items developed during the Item Generation Phase of the study. A total of 10 participants responded to Round One. More than half of the participants had 16 years of experience or more working as a nurse educator (60%), and of those, 40% had 20 plus years of experience. Of the participants, 90% stated they agreed with MAiD, and 90% also responded no when asked if they identified themselves as conscientious objector to MAiD. One participant selected unsure on both their agreement with MAiD and whether they identified as a conscientious objector or not. Characteristics of faculty participants is reported in Table 2. Table 2 Characteristics of faculty participants Sample Characteristics n % M SD Age 9 50.11 6.99 Gender identity: Male 2 20 Female 8 80 Other 0 0 Prefer not to say 0 0 Sex assigned at birth: Male 2 20 Female 8 80 Other 0 0 Prefer not to say 0 0 Number of years worked as an educator 15.7 7.96 Level of agreement with MAiD: Agree 9 90 Disagree 0 0 62 Sample Characteristics n % M SD Unsure 1 10 Prefer not to say 0 0 Identify as contentious objector to MAiD: Yes 0 0 No 9 90 Unsure 1 10 Prefer not to say 0 0 Note. Sample (n=10) participants. One participant chose N/A for age, so only 9 responses recorded for this category. In Round One, the analysis of participant comments revealed that several questions were unclear or inappropriate in this Canadian context. The first question concerned the demographic items around religion and spirituality. In the first round, the consensus was to exclude the question about religious attendance reported by number of days attending per week. Participants also reported a lack of understanding of spiritual and religious definitions, and questioned whether the question related to institutional attendance or attendance on holidays only was relevant. It was also suggested that perhaps days per week would not capture the individual’s religious dedication. For the question, what is your religion or faith expression, similar comments were provided. The main theme of comments related to this question was that spirituality and religion can be different, and that the definition of religion might not be clear to all participants. Therefore, this demographic question was clarified and reworded to say do you consider yourself religious and/or spiritual, and then Likert response options were adapted to allow respondents to choose religious but not spiritual, spiritual but not religious, both religious and spiritual, or neither religious or spiritual. 63 Two other controversial questions were those that addressed “end-of-life care”, as well as questions relating to scope of practice and forecasting potential future roles if students were to become NPs. In regards to death and end-of-life care, it was decided based on the comments to exclude the two questions that asked if students had cared for a patient at end-of-life in the last 12 months, and also if they had attended or observed a death in the practice setting. The discussion around these questions spoke to the lack of clarity around what constituted end-of-life, and the lack of relevancy as it relates to MAiD. Within all four case studies, the first question read “what is your comfort level with providing MAiD in the future if you were a qualified NP”. This question consistently had the most comments and least amount of agreement among the experts. Themes from this question included: difficulties predicting future self, lacking relevance as “many students won’t go on to become NPs”, and that the question needed to refer specifically to the case study, as to not be interpreted in more general terms. This question was then brought back to the research committee for review who decided to modify the phrasing and re-present it in Round Two, which is discussed in the next section. 4.2.2 Phase 2.2 Delphi Round Two In Round Two of the Delphi, the survey was sent in the same manner as Round One to 10 participants though an electronic link to the UBC Qualtrics platform. A reminder email was sent after two weeks, and then after an additional two weeks a final reminder was sent. This extension was given in attempt to collect as much data as possible, understanding the busy schedules of the experts during this time of year which fell at the end of a semester and over winter break. A total of 8 participants completed the survey in Round Two (a response rate of 80%). On average Round Two took participants 43.89 minutes to complete. In addition to asking if the participant 64 would (1) include, (2) exclude, or (3) adapt each question, participants were also asked to rate the level of importance of each question based on a 5-point Likert scale. Participants were not asked to create new questions in this round. It is important to note that question numbers changed from Round One to Round Two, which reflects questions removed and adapted. Of the 47 questions presented to the panel in Round Two, 45 reached a level of consensus of 75% or greater, and 34 of these questions reached a level of 100% consensus (27 of which all 8 participants chose to include without any adaptations). For each question, level of importance was determined based on a 5-point Likert scale (1=very unimportant, 2=somewhat unimportant, 3=neutral, 4=somewhat important, and 5=very important). It was determined through analysis that one of the 8 participants may have misinterpreted the scale as they consistently chose to include questions, then rated them as very unimportant. After a careful review of this response, a decision was made in consultation with the research committee to exclude this respondent’s ratings from the analysis of the level of importance. A total of 7 participant responses related to question importance were analyzed and results are reported in Figure 1 (median importance reported for each item) and Figure 2 (ranking of somewhat/very important for each item percent). Level of consensus (include and adapt responses combined), participant comments, and decisions made are reported in Table 3. Table 3 Decision for Survey Questions: Delphi Round Two (n = 8 participants) Question Consensus Level (%) Participant Comments Decision 1. Please enter your age in years 100 It is possible some students may be younger than 20 Revised: Included category for less than 20 2.What sex you were assigned at birth? 75 No change 3.What gender to you identify as? 75 These are not gender categories. Here are possible options: Woman. Man. Transgender. No change 65 Question Consensus Level (%) Participant Comments Decision Non-binary/non-conforming. Prefer not to respond. 4. Please enter what country you were primarily raised in? 87.5 No change 5. Please enter what province or territory you were born in if you were born in Canada 75 If a person was not born in Canada - how will they respond? No change: Question will only show for those who enter Canada 6. Do you consider yourself religious and/or spiritual? 100 It seems the terms are important to identify or explain here religious and spiritual are not necessarily very different for some No change 7. Importance of religion or faith 100 Revised: How important is religion and/or spirituality to you? 8. Have you cared for a patient who has died during the period of time you were looking after them? 100 No change 9. Have you discussed or been involved in discussions with a patient regarding end-of-life issues? 100 No change 10. Have you cared for a patient who has requested MAiD? 100 No change 11. Have you cared for a patient who has received MAiD? 100 No change 12. Have you been in the room when a patient received MAiD? 100 No change 13. My nursing education has provided sufficient content about the nursing role in MAiD 100 No change 14. Please rate your understanding of the role of the Registered Nurse in MAiD 100 No change 15. I feel like I have enough information to take part in a discussion about MAiD with other nursing students 100 No change 66 Question Consensus Level (%) Participant Comments Decision 16. I know the current eligibility criteria for MAiD in Canada 100 No change 17. I know the safeguards in place within the MAiD legislation? 100 No change 18. I am in support of Nurse Practitioners providing MAiD 87.5 No change 19. I am in support of Physicians providing MAiD 87.5 No change 20. A person has the right to decide on the timing of their own death 100 No change 21. My attitude towards MAiD is conflicted 100 No change 22. I accept MAiD as part of Canadian healthcare 100 No change 23. My view on MAiD is impacted by my a) religious or spiritual beliefs b) family c) co-workers d) friends 100 Could include personal/professional experiences as an option I am thinking we are missing out a strong influence of one’s past experiences other than people and spiritual beliefs. I would like to see an option E for lived experiences Revised: Include personal and/or professional experiences as sub-category 24. My undergraduate nursing education has shaped my views on MAiD 100 Has helped to shape or "helped to inform" Revised: My undergraduate nursing education has helped shape my views on MAiD 25. I feel prepared to care for a client requesting MAiD 100 No change 26. I understand what is meant by conscientious objection 100 No change 27. I believe nurses have the right to conscientiously 100 No change 67 Question Consensus Level (%) Participant Comments Decision object to participating in MAiD 28. I know the steps to follow to declare conscientious objection 100 No change 29. As an RN I would be willing to start an intravenous (IV) for a patient receiving MAiD 100 No change 30. I am willing to care for patients and their families during the MAiD process within my scope of practice 100 No change 31. I am comfortable caring for the patients’ body after a MAiD death 87.5 No change 32. I am comfortable working with families during the bereavement period following a MAiD death 100 No change 33. I am willing to assist the NP or physician to administer a MAiD death within my scope of practice 100 No change 34. I am willing to become a MAiD assessor in my future career 87.5 No change 35. I am willing to become a MAiD provider in my future career 87.5 No change Case study #1: MAiD and a mature minor 36. What is your comfort level with a mature minor’s right to make this decision? 100 No Change 37. What is your comfort level with assisting the physician/NP to administer death? 100 No change 68 Question Consensus Level (%) Participant Comments Decision 38. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 75 Maybe difficult to predict future comfort level? very few likely to be qualified as NPs No change Case study #2: MAiD when psychiatric illness is underlying condition 39. 100 No change 40. What is your comfort level with assisting the physician/NP to administer death? 100 No change 41. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 75 No change Case study #3: MAiD when death is not reasonably foreseeable 42. What is your comfort level with the patients right to make this decision? 100 No change 43.What is your comfort level with assisting the physician/NP to administer death? 100 No change 44. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 62.5 No change: Experts in committee agreed to test this question in the focus group with students. Case Study #4: MAiD using an advanced request 45. What is your comfort level with the patients right to make this decision? 100 No change 46. What is your comfort level with assisting the physician/NP to administer death? 100 47. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 62.5 No change: Experts in the committee agreed to test this question in the focus group with students. 69 Figure 1. Median Ranking of Level Importance for Each Survey Item. 2.53333333.53.53.53.53.544444.54.54.54.55555555555555555555555555552453 84 14 44 731 81 93 43 5161 11 292 12 64 6781 01 31 41 51 61 72 02 22 32 42 52 72 82 93 03 13 23 33 63 73 94 04 24 34 5RANKING OF MEDIAN LEVEL OF IMPORTANCE 70 Figure 2. Percent Level Ranking of Importance for Each Survey Item. 14.2928.5728.5728.5728.5742.8642.8657.1457.1457.1457.1457.1565.4371.4371.4379.7185.7185.7185.7185.7285.7285.7285.7285.7285.7285.7285.7285.7285.7285.7285.7285.7285.7285.72100100100100100100100100100100100100100233 84 44 754 11 81 93 43 54911 14 61 32 33 16781 01 21 51 72 42 82 93 33 63 94 24 51 41 62 02 12 22 52 62 73 03 23 74 04 3RANKING LEVEL OF IMPORTANCE: SOMEW HAT IMPORTANT P LUS VERY IMP ORTANT RESP ONSES 71 After Round Two, a careful analysis of participant comments and level of importance was completed in consultation with the research committee. While the main method of survey item development came from the participants response to the include/exclude/adapt portion of the survey, level of importance was used to assist in the decision of questions that created controversy, or that rated lower in the include/exclude/adapt portion of the Delphi. One challenge was when participants would choose to include the item, and then rate is as lower on the importance scale. This finding suggests that perhaps the participant still thought it added value to the survey, but was less important than other questions overall. Questions that rated low in level of importance included questions on future roles, sex and gender, and religion/spirituality. Of the 47 questions, four were revised. The two questions that did not meet the 75% cut off level for consensus were reviewed by the research committee. Of these two questions, one was asked in the body of the survey and the other in the case study, the questions read: What is your comfort level with providing a MAiD death in the future if you were a qualified NP. Based on a review of participant comments, it was decided to retain these questions for the cognitive interviews with students in the final phase of testing based on the expertise of the committee. Question #23 was changed from one question with 4 subcategories into 4 separate questions, resulting in a new total of 51 questions from the previous 47. Survey questions were converted into a word document, and one final review was completed to check formatting and question clarity. The revised survey (including 51 questions) was then brought forward to the cognitive interviews with students in Phase Three (Appendix E). 72 4.3 Phase Three: Cognitive Interview Focus Group A total of five Selkirk College nursing students attended the one-time synchronous focus-group session. The discussion guide (Appendix F) was used to direct the session. The session started with a review of the purpose of the study and the consent form, followed by a detailed review of the survey which was sent out to participants as a digital copy. The interview took approximately two and a half hours to complete. All five participants were between the ages of 20 and 49, and all participants identified that they were born in Canada. Of the participants, 60 % (n = 3) identified as spiritual but not religious, 20 % (n = 1) as religious and spiritual, and 20 % as neither religious or spiritual (n =1). In regards to end-of-life care, 80 % (n = 4) of students had cared for a patient who died during the period of time they cared for them, and 100 % (n = 5) reported having discussed or been involved with discussions with a patient about end-of-life issues. In regards to MAiD, 80 % (n = 4) of students had cared for a patient who requested MAiD, 60 % (n = 3) for a patient who later received MAiD, and only 20 % (n = 1) were in the room when a patient received MAiD. Characteristics of student participants are reported in Table 4. Table 4 Characteristics of student participants Sample Characteristics n % Age: Less than 20 0 0 20-29 2 40 30-39 1 20 40-49 2 40 Gender identity: Female 4 80 Other 0 0 73 Sample Characteristics n % Prefer not to say 1 20 Sex assigned at birth: Female 4 80 Other 0 0 Prefer not to say 1 20 Country primarily raised in: Canada 5 100 Religious and/or spiritual: Religious but not spiritual 0 0 Spiritual but not religious 3 60 Religious and spiritual 1 20 Neither religious nor spiritual 1 20 Prefer not to say 0 0 Importance of religion and/or spirituality: Very unimportant 0 0 Unimportant 0 0 Neutral 1 25 Important 3 75 Very important 0 Prefer not to say *did not record for 5th participant 0 Cared for a patient who has died during the period of time caring for them Yes 4 80 No 1 20 Discussed or been involved with discussions with a patient regarding end-of-life issues Yes 4 80 No 1 20 Cared for a patient who has requested MAiD Yes 4 80 No 1 20 Cared for a patient who later received MAiD Yes 3 60 No 1 20 Prefer not to say 1 20 74 Sample Characteristics n % Been in the room when a patient received MAiD Yes 4 80 No 1 20 Note. Sample (n = 5) participants. Due to the small sample size of data collected, simple content analysis was used to analyze the focus group data. Hand written researcher notes were compared with an audio recording of the session. Of the 51 questions, 29 were deemed to be clear and created little discussion amongst the group. Participant comments for the remaining 22 questions were summarized and sent to the research committee for review. Four key themes that emerged from the focus group discussion with examples included: unclear or ambiguous wording, difficulty answering questions based on context or personal knowledge, additional response options requested, and emotional responses evoked by questions. 4.3.1 Theme One: Unclear or ambiguous wording of questions In the first theme, students reported that they struggled with the clarity of one word in some of the questions, or that the wording of some questions was ambiguous. This led to discussion around the meaning of specific words, and how it could change the question response based on the individual student’s interpretation. Examples of specific questions that this came up for included: Have you cared for a patient who has requested MAiD (question #10), my nursing education has provided sufficient content about the nursing role in MAiD (question #13), and my view on MAiD is impacted by my spiritual beliefs (question #27). Specific examples of issues with wording or ambiguity and their associated question number included: 75 “I think just the clarity around the word care, just in the way we care for our patients may look a lot different than care for your family. So maybe support may be more realistic?” (question #10) “What do you mean by requested? Like just requesting to the nurse and the doctor that they want (MAiD)…[or] actually going through the process and the paperwork of having like legally requested MAiD” (question #10) “I guess for me it's the word sufficient. Like I feel like that was kind of ambiguous” (question #13) “It just feels like that word is laden with…complexity that, um, distracted me from the question” (question #13) “It (sufficient) feels like a really subjective word” (question #13) “I just felt like…concepts could be separated again. I feel like I would have probably scored them differently” (question #27) From these comments, question # 10 & #13 were revised, while the decision was made to keep #27 unchanged. These decisions were made in consultation with the research team. Question # 10 was changed from have you cared for a patient who has requested MAiD to have you cared for a patient who was actively considering MAiD. Question #13 was changed from my nursing education has provided sufficient content about the nursing role in MAiD to My nursing education has provided enough content for me to care for a patient considering or requesting MAiD. 76 4.3.2 Theme Two: Difficulty answering questions based on context or personal knowledge In the second theme, students expressed feelings of being unprepared to answer some questions due to a lack of familiarity with the terms or language used. This led to broader discussion about an overall lack of awareness about the current legislation on MAiD, and the differences and the “gray area” between the student and RN role. These discussions came up for questions related to terminology within the MAiD legislation around safeguards, mature minor, eligibility criteria, and conscientious objection (questions # 17, 18 19 & case study #2 mature minor). Specific examples from these questions include: “I don't feel clear about my role as like, well, I know what a student should say, but even as an RN, I'm not sure” (question #18) “I think I just don't know what it means” (question #19) “I'm not familiar with the term mature minor” (case study #2) “I think all of these scenarios are ethically loaded, and … I think it's harder for me to consider these scenarios just because there hasn't been a lot of guidance on any of these … new provisions for me” (case study #2) “I feel like it would be more difficult (to answer) just because it's a more gray area” “I'm just … not super familiar with it and what, what the exact rule would be like” (question #17) Students reported that while they themselves did not know the exact meaning of the terminology, they understood the aim of the survey was to assess their knowledge, so felt the questions were appropriate to ask. It was decided in the final survey to provide a definition for the term mature minor, and adapt the wording of two questions related to conscientious objection. Questions 77 related to conscientious objection were reworded based on the responses from the cognitive interview to say: I believe I have the right to choose not to participate in MAiD and I know the steps to follow if I as a nurse choose not to participate in MAiD 4.3.3 Theme Three: Additional response options requested In the third theme, the main additional response options requested were unsure and unable to say. This came up for questions such as: Have you care for a patient who has later received MAiD (question #11), a person has the right to decide on the timing of their own death (question #23), and how important is religion and/or spirituality to you? (question #7). Similar to the Delphi, the questions on religion and spirituality consistently stimulated additional dialogue in the discussion with students. From this discussion religion and spirituality were separated into two separate questions: (1) How important is religion to you? and (2) How important is spirituality to you? Specific examples from the discussion included: “I wonder if… an answer option could be something like unable, unable to say” (question #11) “I felt like if there was an option that was unknown…that would have made it easier for me to answer the question” (question #11) “I also was kind of like, I wish there was kind of a scale…or that they were separate maybe the spiritual and the religious piece…I feel like that I could have answered that more clearly rather than having the two together as one choice.” (question #7) “I think if there was an unknown or unsure option, it would be beneficial” (question #23) Based on participant comments and in consultation with the research committee, the response option of unsure was added to questions #11, questions #23 remained unchanged to align with the survey Likert scale options, and question #7 was separated into two questions. 78 4.3.4 Theme Four: Emotional responses evoked by questions The fourth and final theme shows a variety of emotional responses evoked by questions. One student described memories of feelings of “joy” as it related to witnessing a MAiD death as it reminded the student of the client’s independence and autonomy in making decisions, and some discussed the distress they felt around some of the case study questions, specifically with a mature minor. Early on in the survey, the demographic questions on sex and gender produced a robust discussion, where several students reported the language in the survey could make non-binary individuals feel “othered”. Interestingly, the questions such as I am willing to become a MAiD assessor in my future career (if I was an NP) evoked excitement for some students and thinking about future prospects, but also was reported to be “difficult to answer” as it was based in the future. Specific examples from the discussion included: “Whoa, okay, we are getting political here … I could feel, a bit more charged in terms of engaging with the question” (question #21) “Brought me a little bit of like feeling of joy. Like it was that last reminded me of it, like last piece of independence that people get to grab on to” (question #23) “It just made me think about … the compartmentalization of the religious and spiritual beliefs … do my religious and spiritual beliefs only come into play when talking about MAiD, or … do my religious and spiritual beliefs inform all of my nursing practice. And I, and I guess that was coming up for me is that … my spiritual beliefs inform all of my nursing practice” (question #6 & 7) “I certainly had to like, whoa, whoa, whoa. Now let me finish this degree first, please. But I could imagine if I had been asked that question like two years ago, even I would react differently” (question #38 & 39) 79 “This just whole scenario just made my heart hurt the idea of a child requesting that. However, it's almost more of a clear decision because it is reasonably foreseeable despite the age” (case study #2) “I feel like the advance requests for me gives me, I don't know, the most comfort in the process for me, just with early onset Alzheimer's and knowing what it can do. It would be so terrifying knowing what was going to happen and not being able to do anything about it, that I worry that they would just spend the rest of their good years being concerned with how they were going to end up, that advanced request seems like if it was properly laid out and at what capacity they wanted, it acted that it could be a really positive thing” (case study #4) “Just feeling like having … male, female, and then other … it’s just an act of othering, like the whole spectrum of gender that falls outside the binary” (question #3) “I'm still imagining myself, my future career as an RN” (question #38) From this discussion, and in consultation with the research committee, the question asking about participants sex was excluded (question #2) and question #3 which asked about gender was provided with new response options: female, male, non-binary, prefer to self-describe. Although not all questions were changed based on the emotions they evoked, this will be important data for nursing educators to review prior to the implementation of this survey. In summary, adaptations were made to 11 of the 51 questions based on the findings from the cognitive interview with students and are reported in Table 7 along with a summary of participant comments. Of these 11 questions, it was decided to separate concepts within three questions, adding three new questions to the overall survey. In initial consultation with the research committee, three questions were removed. These questions were compared with the 80 Delphi comments, comments from cognitive interviews, as well as the level of importance. Including adapted questions, removed questions, and added questions, the final survey contained a total of 51 questions as three were added and three excluded. A final review of the survey was made in consultation with the research supervisor based upon all available data, and the decision was made to further clarify and edit several questions and sections of the survey. In this final review, questions #4 & #5 (do you consider yourself religious/do you consider yourself spiritual) were removed to reduce redundancy since these concepts were captured in questions #6 & #7 (importance of religion/importance of spirituality). In all four case studies the questions asking about future role as NP was removed. The survey subheadings were edited and refined, and in the survey section titled influences on beliefs wording was changed from impacted to influenced in all 7 questions. Wording within case studies was refined, and in case study # 2: Maid and mature minor, foreseeable death was removed, as the client was noted to already have a terminal diagnosis. From this final review, 45 survey questions remained after the 6 questions noted above were removed. Table 5 Questions adapted or removed based on cognitive interview focus group Questions Summary of participant comments Decision 2.What sex were you assigned at birth? Triggering, confusing, questioning relevance to survey Exclude 3.What gender do you identify as? Felt “othered”, word other was a “problem”, feelings of frustration. Revised: a)Male, b)Non-binary, c) Female, 4) Prefer to self-describe 6.Do you consider yourself religious and/or spiritual? Subjective, relationship to question is often “in flux”, recommend separating the two. Excluded 7.How important is religion and/or spirituality to you? Spirituality and being spiritual might be different, “had to pause”, recommend separating. Revised: Spit into two separate questions 81 Questions Summary of participant comments Decision 9.Have you discussed or been in discussions with a patient regarding end-of-life issues? Unclear is “being involved” meant having or witnessing discussions. Revised: Have you discussed or observed discussions with a patient regarding end-of-life issues 10.Have you cared for a patient who has requested MAiD? Initial request or who has been approved? Is this patient actively considering? Have they gone through legal paper work? Revised: Have you cared for a patient who was actively considering MAiD? 11.Have you cared for a patient who later received MAiD? Unsure it clients they worked with actually received MAID. More often this is unknown for students as work with patients in short rotations. Revised: added “unsure” response 13.My nursing education has provided sufficient content about the nursing role in MAiD Unclear on word sufficient can be subjective/ambiguous. Unsure what ‘enough’ content would be. Wondering if this is about sufficient content or availability of content. Revised: My nursing education has provided enough content for me to care for a patient considering or receiving MAiD. Add “unsure” option. 15.I have enough information to take part in a discussion with other nursing students about MAiD Clarity on work discussion, does this mean having accurate/meaningful discussions? Is this in relation to specific information about MAiD? Revised: I have enough understanding about MAiD to take part in a meaningful discussion with other nursing students 24.My attitude towards MAiD is conflicted Should be first question in this section as it invites student to reflect on how they situate themselves and how they engage in the process. Moved to question #21 in survey. 25. I accept MAiD as part of Canadian healthcare Brought up feelings and emotions that this is not a questions asked of other areas in nursing. Revised: I believe MAiD should be a part of the Canadian healthcare system 82 Questions Summary of participant comments Decision 31. My view of MAiD is strongly impacted but my personal and/or professional experiences Separate these two. Personal may impact someone different than professional. Revised: Split into two separate questions. 38. I am willing to become a MAiD assessor in my future career (if I was an NP) Did not know meaning of assessor, difficult to answer question into the future. Career decisions change rapidly in nursing so only captures one point in time. Exclude 39.I am willing to become a MAID provider I my future career (if I was NP) Ambiguous. Exclude 4.4 Summary In summary, this study consisted of three phases: Item generation, the Delphi method, and cognitive interviews through the use of a focused group discussion. Figure 3 provides a brief overview of the results of each phase of the study. The final survey can be found in Appendix G. The following and final chapter provides a discussion of the results and key findings of the study and recommendations for future research, practice, and education. 83 Figure 3. Summary of Results from Phase One, Two & Three. Item generation: 56 Questions Delphi Round 1 Results 56 questions: 54 of the 56 questions reached 75 % consensus or greater1 question less than 75 % removed, plus 8 additional questions removed47 total questions moved to Round 2Delphi Round 2 Results 47 questions:45 of the 47 questions 75 % consensus or greater 2 did not meet consensus were reviewed and retained4 added51 total questions moved to cognitive interviews Cognitive Interview 51 questions: 29 questions clear 22 reviewed & 11 adapted 3 removed & 3 added51 total survey questions Final Review Results 51 questions:12 questions adapted6 questions excluded 45 total survey questions 84 Chapter 5: Discussion The purpose of this study was to develop a survey to assess nursing students’ attitudes toward and willingness to participate in MAiD in the Canadian context. This study occurred in three phases: item generation, the Delphi method with expert nursing faculty, and a cognitive interview conducted with nursing students through the use of a focused group discussion. This chapter contains a discussion of the results of each phase of the study, key findings, study limitations, implications for practice and education, and recommendations for future research. 5.1 Key Findings This discussion will follow the categories of the survey. The final survey contained 7 categories: demographics, experience with end-of-life and MAiD, knowledge of MAiD, agreement/disagreement with MAiD, influences on beliefs about MAiD, willingness to participate in roles related to MAiD, and four case studies that aligned with proposed Canadian legislative changes. Findings will be discussed in relation to how the questions can be interpreted based on what is already known about MAiD in Canada, nursing students’ experiences and knowledge of MAiD, and what was revealed during the creation and validation of the survey. 5.1.1 Demographic questions Based on the results of the Delphi with faculty and the focus group interview with students, two areas of controversy came up in this study: disagreement about questions relating to gender and sex, and the ongoing discussion about the difference between religious and spiritual beliefs. It was no surprise that questions relating to age and location of participants quickly reached consensus in the Delphi and brought up little discussion in the focus group interview with students, as these are standard questions seen in health surveys. 85 The controversy about sex and gender arose within the Delphi survey with faculty, and became a lengthy discussion in the focus group interview with students. It became clear through these discussions that asking about sex in the survey was controversial. The Canadian Institutes of Health Research (CIHR) (2019) provides key considerations for using sex and gender as variables in research, which were used in the original creation of these questions. The CIHR recommends that both sex identified at birth and current gender identity be included in health studies when appropriate in research. Participants of this study suggested that a more important and appropriate question to ask participants was about gender, and some felt that asking about sex assigned at birth was not relevant to the survey, and indicated that this could be triggering for some individuals. In the Delphi survey, two participants chose to exclude the question about sex, and in regards to gender, participants reported that the original terms used (male, female, other, prefer not to say) were not in fact “gender terms” and that they “reinforced binary”. However, in future administrations of this survey it may be important to use gender to compare the attitudes of females, males, and non-binary and gender diverse individuals towards MAiD, and the data collected in this study and similar studies, supports asking about gender (Hozzeinzadeh & Rafieli, 2019; Falconer et al., 2019; Freeman et al., 2019). Gender and/or sex have been considered in other studies relating to MAiD and euthanasia. One study with nurses and nursing students has shown that gender did affect respondents’ attitudes towards MAiD (Hozzeinzadeh & Rafieli), while the study conducted with medical students in Canada by Falconer and colleagues used sex as a predictor variable, and reported no significant correlation between sex and willingness to practice assisted death. The challenge with using only gender is that the terms gender and sex are often mistaken or confused for one another, and gender in particular, has a variety of meanings and definitions 86 (Johnson, Greaves & Repta, 2009). Comparing the results of this study with the CIHR best practices for using sex and gender in health research, using gender alone may be preferable to using sex assigned at birth, due to the fact that this particular research is not examining cellular biological differences that may occur with sex differences. It is not surprising that questions related to gender and sex created disagreement in this study, and may not have aligned with CIHR best-practices. This may be due to the increasing discourse around the rights and freedoms related to gender identity and gender expression, and increased availability of training and resources related to these topics in recent years for nursing educators, as part of ongoing work to improve health care providers’ awareness of these topics. Questions related to religion and spirituality also sparked much debate in this study, which is not surprising based on the ongoing global controversies around religion, faith, and spirituality. The landscape of religion in Canada is continually changing and becoming more diverse, with a decreasing number of Canadians reporting religious affiliation each year (Statistics Canada, 2021). In regards to nursing students, McMechan and colleagues (2019) suggested that in the Canadian context, while students agreed religious beliefs may affect their attitudes toward MAiD, a majority of students reported still supporting MAiD. Questions related to religion and spirituality were reviewed carefully during this study, as religion has been shown in several quantitative studies to be one of the more important predictors in healthcare professionals’ attitudes toward, and willingness to participate in assisted death (Freeman et al., 2020; Green et al., 2020; Inghelbrecht et al., 2009 . Those who self-identified as religious had less favorable attitudes towards assisted death and were less likely to participate. The results from this study revealed that both faculty and students agreed that asking questions about religion and spirituality were important, however in the original question where these concepts 87 were combined, participants recommended that religion and spirituality be considered in two separate questions. Findings from the literature and this study support the inclusion of questions related to religion and spirituality as singular items, as they may be predictors of nursing students’ attitudes toward and willigness to participate in MAiD. 5.1.2 Experience with end-of-life and MAiD End-of-life care is a complex paradigm, one in which nursing students in particular struggle with, and may or may not get experience with during their nursing education. The challenge with this is that when nurses graduate, they have the responsibility to competently care for clients and their families in end-of-life. Both end-of-life care and MAiD are ethically and morally complex topics. In the Delphi method with faculty, questions relating to end-of-life care, and experience with MAiD were consistently rated highly, reaching 100 % consensus within the first or second round which is not surprising based on the literature that also indicates these areas of practice for nursing students can be complex. Of the students who participated in the focus group interview, four out of five had cared for someone who died during the time they were caring for them, four out of five had cared for a client who requested MAiD, and all five participants had been involved in end-of-life discussions with patients. This finding further supports the inclusion of questions related to students’ experiences with end-of-life care and MAiD as the results demonstrate that both the experts and students identified end-of-life care as an important area of practice, and therefore also important to identify potential gaps in educational programs. Nursing students’ attitudes and experiences with end-of-life care has been explored extensively within the literature (Adesina et al., 2014; Dimoula et al., 2019; Edo‐Gual et al., 2014; Green et. al., 2020; Matchim & Raetong, 2018). In regards to MAiD specifically, literature 88 on nurses and nursing students’ experiences is very compelling, however still limited in the Canadian context (Beuthin et al., 2018; Canning & Drew, 2022; McMechan et al., 2019; Pesut et al., 2020). From the literature on nursing students’ experiences with end-of-life care, it is known that many nursing students have been involved with, and play a significant role in end-of-life care during their education (Green et al., 2020). While some nursing students may not get direct experience with end-of-life care during their education, a majority of students have reported participation at a variety of levels, such as conversations about end-of-life, care of clients and their families, care of the deceased, and bereavement support (Ferri et al., 2021; Green et al., 2020). The literature reveals that in general, nursing students did not feel adequately prepared through their education to be involved with end-of-life care and decisions, however they did report having had positive and meaningful experiences when caring for clients at end-of-life (Dimoula et al., 2019; Edo‐Gual et al., 2014; Matchim & Raetong, 2018). In their study with third year nursing students, Adesina, DeBillis, & Zannettino (2014) suggested that students’ attitudes and values affected their knowledge around the ethics of care for the dying, as well as their own perceived level of knowledge related to end-of-life care. This reiterates the importance of asking questions related to end-of-life along-side MAiD, as these are both areas where nursing students may not feel fully competent following their nursing education. 5.1.3 Knowledge of MAiD Through the Delphi method with faculty and the cognitive interview focus group with nursing students, it became clear that both participant groups supported the inclusion of questions related to the knowledge of MAID; however, these questions created discussion in the focus group interview suggesting that some nursing students may be unclear on the details of the Canadian MAiD legislation. In British Columbia, where this study took place, BCCNM sets out 89 entry-level competencies that newly graduated RN’s in BC are required to meet. These practice standards include indicator 1.15 “(i)ncorporates knowledge about ethical, legal, and regulatory implications of medical assistance in dying (MAiD) when providing nursing care” (BCCNM, 2021, p.6). Questions related to knowledge of MAiD can assist nursing educators in assessing the level of understanding of students and identify the gaps in curricula, to assist students in meeting the regulatory competencies such as the one noted above. Although there is no known quantitative Canadian literature outlining nursing students’ knowledge of MAiD, several studies in Canada have explored nurses’ knowledge and experience, specifically in regards to conscientious objection and safeguards, with one qualitative study exploring Canadian nursing students’ experiences with MAiD (Mcmechan et. al, 2019). Since the completion of this study, the study by Canning and Drew (2022) also supported the findings from this study, not only in regards to the importance of beliefs and experiences as potential influencers on students comfort with MAiD, but also surrounding the lack of knowledge students have about MAiD. In regards to conscientious objection, several student participants reported being unclear on the meaning of the term conscientious objection, and the steps to take if they were to declare conscientious objection. One participant stated they would need to “look up this information”, while another commented that it is a “topic that does not come up often”. These comments align with results of a study with nurses in Madrid by Rafel and colleagues (2017) which concluded that nurses received very little or no content relating to the concept of conscientious objection during their nursing education. In addition to this, one participant reported feelings of “guilt” for not knowing what it (conscientious objection) was, and thus did not feel prepared. This is consistent with the findings from a Canadian study by Pesut and colleagues (2019) which summarized the “shades of grey” related to conscientious 90 objection and nursing practice—often being ethically complex and uncertain decisions for many nurses. This study also suggested that conscientious objection can create additional stress and divisiveness between nurses who choose to participate and nurses who choose not to participate in MAiD. In the study by McMechan and colleagues (2019), a key finding indicated that nursing students expressed confusion related to the roles and responsibilities of the student and nurse in the MAiD process. The results of this study combined with what is already known about the grey areas of conscientious objection, supports the inclusion of these questions in the survey, and may produce helpful data for nursing educators. The survey question about safeguards within the MAiD legislation sparked similar conversation among student participants. This conversation brought up comments from participants such as “what are safeguards?” and “who are the safeguards for?” (patients vs. nurses). These findings can be seen as particularly concerning, considering there are proposed changes to MAiD safeguards within the Canadian legislation, and the expectations from both the CNA and nursing regulatory bodies, indicate that nursing knowledge on these topics is critical for ensuring safe and competent nursing care for those who choose to assist with MAiD (CNA, 2017). This finding further highlights the importance of asking students questions about their knowledge of MAiD, along the understanding of the purpose of safeguards and who these are meant to protect. This can provide helpful data for nursing educators to use to identify specific gaps in MAiD content that may occur in curriculum. 5.1.4 Agreement/disagreement with MAiD Several questions in this section of the survey created discussion amongst the faculty and student participants. Although these specific statement style questions are well represented in similar Canadian studies with nurses and medical students (Falconer et al., 2019; Freeman et al., 91 2019), two were excluded after round one of the Delphi due to clarity and wording. The fact that the questions in this category otherwise did not create much discussion or controversy is not surprising, as these questions have been used in similar validated tools in the Canadian context, and were identified by participants as “clear” and “specific” for the population of study. Overall students felt these questions were more personal, encouraging them to critically reflect on their moral stance. Although the results of this study support the inclusion of questions related to agreement/disagreement with MAiD, there has been compelling research in the Canadian context to suggest that nurses struggle with simply agreeing or disagreeing with MAiD, and rather it is a moral decision that exists on a continuum—one that is constantly “in flux”, being impacted by a variety of influences and factors (Beuthin et al, 2018). This confirms the importance of asking questions in the next two sections of the survey about the specific influences that might impact beliefs or attitudes towards MAiD, as well as willingness to participate in specific roles related to MAiD. A limitation to this, is that asking about agreement and disagreement with MAiD is not just as simple as asking if ones agrees or not, rather specific influences on beliefs need to be explored and these results may be difficult to capture as they are said to be on a continuum and in flux based on time and context. These influences are explored in the next section of this discussion. 5.1.5 Influences on beliefs about MAiD Questions in this section of the survey explored the various influences that may have had an impact on beliefs about MAiD. In the final survey, questions pertaining to these influences included: religious and spiritual beliefs, family, co-workers, friends, personal experiences, professional experiences, and undergraduate education. Discussions about religion and 92 spirituality in this section of the survey were similar to discussions involving the question asking about religious and spiritual beliefs in the demographic section of the survey, which were also controversial and created some level of disagreement. In this section, a new concept came to light during the focus group interview with students, that influences on beliefs and views on MAiD extend beyond religion and spirituality, and may be impacted by family, friends, co-workers, and society in general. This idea is well supported in the literature, however there are some differences between qualitative and quantitative findings. Quantitative studies have noted a connection between religious beliefs and attitudes toward MAiD (Falconer et al., 2019; Freeman et al., 2020; Green et al., 2020; Inghelbrecht et al., 2009) where qualitative studies were more likely to attribute other factors being strong influences on beliefs about MAiD such as personal and professional values, social and clinical circumstances, and family and social constructs (Beuthin et al., 2018). Pesut and colleagues (2020) discussed the importance of “proximity to the act”, suggesting that nurses’ beliefs about MAiD may shift based on whether they are thinking about their moral stance on MAiD, or actually contemplating providing MAiD. Similar themes arose from the Delphi and the student interviews, clearly highlighting the importance of asking about personal and professional experiences. Once religion and spirituality were separated into two separate questions, these quickly gained consensus. The challenge with analyzing future results from this survey will be that the qualitative literature in the Canadian context suggests that even religious nurses may agree with MAiD. This proves to be an area that requires further research, and may produce results with limited reliability in the final implementation of the survey. Student participants suggested further refining this section, by using separate questions to explore how one can be influenced differently from personal and professional experiences in 93 their lives, as well as different people such as colleagues and friends. An interesting result noted was that the word view in the question “my view on MAiD is impacted by...” was well received by students, suggesting that this is something they felt could be “shifted or influenced by others” while beliefs could not be. This poses a challenge as these terms can take on different meanings based on differing context, religions, and cultures. These questions, while originally derived from the Falconer and Freeman studies, were re-worded and then re-created based on data from the focus group interview. Contextual influences on attitude such as the questions used in this section of the survey have been an ongoing area of debate among authors of previous studies. Lavoie and colleagues (2016) assessed the psychological determinants of Canadian physicians’ and their willingness to practice euthanasia. While this study occurred before the enactment of the MAiD legislation in Canada, it provided important data that showed how challenging it can be to assess if in fact attitudes can be impacted by non-sociodemographic variables. Moral norms and professional associations rated highly as possible influences on physicians’ willingness to practice euthanasia. In summary this is not a concept that has been well documented in the literature and results from previous studies highlight inconsistency among variables used to assess influences on attitude. Pesut and colleagues (2019) also highlighted this challenge, and identified how moral judgement can be impacted by social contexts, and therefore “only changes under certain conditions” (p.3). Future studies on this topic may be an area that can reveal new knowledge on how these individual influences may impact students’ views on MAiD differently. 5.1.6 Willingness to participate in roles related to MAiD Two questions within this section of the survey created what was notably the greatest and most consistent controversy—whether or not to ask nursing students if they would be willing to become a MAiD assessor or provider in the future, should they become a qualified NP. These 94 questions were derived from the survey by Falconer et al., (2019) with medical students, but were adapted for nursing students. It is not uncommon for nursing students to think about their future careers, and is something that is often encouraged during their nursing education. Career planning for nursing students has been supported in the findings of a recent study by Wei and colleagues (2021) which suggested that nursing students who plan for their future career, are able to learn in a more succinct manner, and be more successful in achieving career ideals. Although these questions achieved consensus in the Delphi, they did bring up consistent conversation, which reveals just how unique and significant the Canadian legislation is, being the first country in the world to include NPs as MAiD assessors and providers. These questions regarding future willingness to participate in MAiD were also asked in each of the case studies, which is where disagreement arose most notably in the Delphi. Instead of asking if the student would be willing to provide MAiD in the future if they were a qualified NP, the case study questions asked what the students’ comfort level was with providing MAiD in the future if they were a qualified NP. These questions did not meet the consensus cut off in the Delphi, but were retained for student interviews. Comments from the students in the focus group revealed that while it may be “difficult to answer” as it is based in the future, they overall felt comfortable thinking about their possible future roles, and could “imagine themselves in this role”. The question about future roles related to MAiD does not currently exist in any studies in the literature, and is different from the study by Falconer and colleagues (2019) since medical students do not need additional training, such as an advanced practice degree to provide MAiD like nurses do. In 2019 there were 6,159 NPs in Canada vs. 300,669 Registered nurses with the Canadian Institute for Health Information (2019) reporting a growth of 8.1% in NPs that year, 95 suggesting that NPs have the highest growth rate within the nursing profession, making this an important area for future research. The concept of future roles in nursing, specifically participation in MAiD, has been reported by Brown (2021), who’s doctoral dissertation work explored health care providers’ reasons for non-participation in MAiD. This study found that there were two categorical factors that impacted someone’s choice to not participate in MAiD, endogenous and exogenous factors. Endogenous factors included: “(1) previous personal and professional experiences, (2) comfort with death, (3) conceptualization of duty, (4) preferred end-of-life approaches, (5) faith or spiritual beliefs, (6) self- accountability, (7) consideration of emotional labour, and (8) future emotional impact” (Brown, 2021, p.114). Exogenous factors on the other hand, included “(1) the healthcare system they work within, (2) the communities where they live, (3) their current practice context, (4) how their participation choices were visible to others, (5) the risks of participation themselves and others, (7) the impact of participation on the patient’s family, and (8) patient relationship and context factors” (Brown, 2021, p.115). These findings further support the inclusion of questions relating to a variety of influences, but also confirms that these influences may be in flux; therefore, the results from the potential future survey may only capture data from a point in time, and this data would only be from student participants who may have fewer contexts related to clinical circumstances, experience with end-of-life care, and fewer patient relationships to draw upon. In summary, several key discussion points were highlighted in this chapter. This discussion of results followed the various categories of the survey: demographics, experience with end-of-life and MAiD, knowledge of MAiD, agreement/disagreement with MAiD, influences on beliefs about MAiD, and willingness to participate in MAiD. In each section of the survey there proved to be similarities that aligned with existing studies, differences, and new 96 controversial topics that arose. It is important to note that while the results of this study may contribute to a greatly under researched topic in Canada, that this study was not without several limitations. 5.2 Strengths and Limitations This study had several key strengths. First, the use of the Delphi method proved to be an effective method to gain consensus on survey items, as consensus was achieved after just two rounds. The experts that participated in the Delphi had extensive experience as nursing educators, and the research supervisor and committee completing the final review of the survey had expert knowledge on the topic and methods used, which contributed greatly to the overall quality of the final survey. Second, the survey was developed in the unique Canadian context, which also took into consideration current proposed changes and contentious and controversial issues surrounding MAiD, making this survey a very timely and current tool that can be used at a future date. The final notable strength is how the survey was well supported with existing literature on MAiD in Canada which continues to be an expanding body of knowledge and research. This study had several limitations which included small sample sizes in both the Delphi and cognitive interview focus group, a lack of diversity in opinions and demographic variability of participants, and the unique Canadian context. The first limitation was the collection of data from a small sample size of expert faculty (n = 10) and nursing students (n = 5). Although these sample sizes are well represented in the literature as appropriate sizes for this type of study, and recommended for both the Delphi and the cognitive interview focus group by Boateng et al. (2018) and Meijering, Kampen & Tobi (2013), the small sample sizes may not have allowed for 97 diversity of opinions, therefore the results may not be generalizable to larger populations (Keeney, Hasson & McKenna 2011). The second limitation was the lack of diversity in not only the participant demographics, but also within their responses and comments. For the Delphi, faculty were recruited from only two institutions in British Columbia, and students from only one institution. A majority of faculty participants (80%) and student participants (80%) identified as female. Of the faculty, 90% agreed with MAiD, which may also impact the way in which faculty viewed and responded to questions related to MAiD. In relation to participant opinions, consensus during the Delphi was reached quickly within two rounds, and revealed an overall consistent level of agreement amongst questions. Finally, it is important to reiterate that the Canadian MAiD legislation is unlike any other legislation in the world, and therefore these findings are limited to Canada and may not be generalizable to other countries. With the landscape of MAiD in Canada still being very new and dynamic, in the future it is possible that the questions in this survey will no longer align with new changes in the legislation and thus this survey may require future adjustments and revisions. 5.3 Recommendations for Future Research This study has highlighted three general recommendations for future research: Further quantitative testing of the survey itself to further understand its psychometric properties, a pilot study of the survey itself with a larger sample size of nursing students, and the need for increased qualitative research with nursing students. With the rapidly changing landscape of MAiD in Canada including legislative changes, prior to survey administration, it will be imperative to complete a pilot study, and ensure the language is up to date with the current legislative changes. This approach is supported by social survey recommendations made by De Vaus (2014). Prior to 98 the pilot study and if significant changes need to be made, revalidation will need to occur and a final survey review will need to occur in consultation with the research team. There should be consideration of including a final expert review from a more diverse demographic, such as those who conscientiously object to MAiD, prior to the implementation of the pilot study. This study has identified the significant gaps in research related to MAiD in Canada specifically related to nursing students. This research is timely, with new changes proposed to the Canadian legislation, understanding nursing students’ attitudes toward and willingness to participate can add valuable data to inform nursing policies, make educational changes, and allow educators to better prepare students for the complex moral and ethical complexities ahead. The qualitative literature is limited, therefore future research using focus group interviews with students may enhance this quantitative data. It will be important to include students from a larger geographical location as this will help to obtain greater diversity within opinions. Freeman et al. (2019) suggested longitudinal studies in regards to analyzing access, quality of care, and staff retention related to palliative care nurses. A similar study with nursing students could add value to this growing body of knowledge, by assessing the MAiD-related attitudes of nursing students and comparing them to the attitudes they subsequently hold as practising nurses. 5.4 Implications for Nursing Practice Understanding nursing students’ attitudes toward and willingness to participate in MAiD is an important part of planning for workplace policy, helping to align nursing education with the current nursing standards that exist on MAiD, and providing data to support ongoing practice education, especially for newly graduated RN’s. The greatest challenge in preparing nurses for the practice setting, is that each province and territory under the MAiD legislation has taken a diverse approach in addressing MAiD legislation. Pesut and colleagues (2019) recommended 99 several implications for practice based on a review of these regulatory documents across Canada. These recommendations can align closely with implications for nursing students as well, and include providing education that aligns with the potential roles related to MAiD, and helping nurses with their moral-decision making, specifically around controversial or contentious topics related to MAiD (Pesut et al., 2019). The CNA did publish a national nursing framework on MAiD in 2017 to assist with the inconsistencies and confusion surrounding MAiD in Canada. While this framework highlighted the importance of nursing education related to MAiD, as well as the importance of nurses providing safe, competent, and ethical care related to MAiD, it did not fully explore specific recommendations for nursing education by using data collected from nursing students. Data from the future implementation of this survey can help to fill these gaps in current research, and by supporting nursing education, may also provide updated recommendations for nursing policies and frameworks related to MAiD. While this study focused specifically on nursing students, it may also be important to explore if this is a tool that can also be administered in the clinical setting for practicing nurses. Green and colleagues (2020) conducted a dual view quantitative study with both nurses and nursing students, to assess their attitudes toward euthanasia. This study highlights the important difference between the attitudes of nurses and nursing students-that although they provide very similar end-of-life care in the practice setting, their level of knowledge and/or experience impact these attitudes. Although this highlights the importance of assessing both nursing students and nurses, there are a variety of barriers when implementing this particular survey with practicing nurses. Many of the questions within the section on knowledge of MAiD have been written in the student context, and while the wording could be changed, a re-validation process would need to occur. Reconstructing and completing in depth validation on this survey may prove to be an 100 important area of future research, and could provide a strong set of comparison data between nurses and nursing students in Canada. 5.5 Implications for Nursing Education The next phase of this study will be the administration of this survey to Canadian nursing students. To do this, nurse educators will need to be prepared with a toolkit so that the administration of the survey is consistent. This tool kit can include a brief overview of the existing literature, explain the administration process, discuss ethical considerations and the sensitivity of questions, define terminology, provide instructions for survey completion such as timing and details on the platform used, and provide guidelines for the analysis and interpretation of results (DeVaus, 2014). Nurse educators will then need to be prepared to contextualize the results of the survey data post administration. Wilkinson, Ferarro & Kemp (2018) suggest that the “contextualization of survey data is defined as the process of linking responses from one or more samples to the circumstances that surround the respondent” (p.2). This goes beyond the survey analysis that can be completed by the survey platform, and does certainly pose a challenge when looking at how this can be done consistently among sites. For consistency, clear units of measure will need to be used in the survey analysis and educators will need to have an awareness of their specific environmental context, as the results could be viewed differently in different parts of Canada based on social and societal norms, and the student’s immediate learning environment. Wilkinson, Ferraro & Kemp also explain the importance of the time and place of survey administration, which would ideally occur at a consistent time during the student’s education, in their fourth and final year. Prior to the implementation of the survey, results will be shared with faculty and students, with a focus on disseminating the strengths, 101 limitations, and advantages to using a three phase process in survey development, as this may be a useful tool for future survey research related to nursing education. A lack of consistent MAiD curricula is a current gap identified in the literature (CNA, 2017; McMechan et al., 2019), and while the results of this survey can enhance this data to support curricular change, there are limitations and recommendations that should be reviewed before administration. First, nursing schools across Canada have very different approaches and philosophical underpinnings to their curriculums, making generalized recommendations difficult. One possible solution is that the survey is administered and contextualized based on schools that share a curriculum, which would provide larger samples sizes for each subset of survey data, and still allow educators to contextualize the results based on their unique curriculum. Although nursing schools may approach these curriculum changes with variable context, it is important to remember that the MAiD legislation is Canada wide, and the CNA has set specific recommendations and practices for Registered Nurses in Canada related to MAiD--making the goal of improving and evaluating MAiD education a shared objective among nursing schools in Canada. The Canadian Association of Schools of Nursing (CASN), is an organization that supports national consistency in nursing curricula and creates and upholds standards of nursing education, has identified the lack of consistent end-of-life nursing education in their 2020-21 national report (CASN, 2021). Contextually, it may be important during the survey administration to access schools who have been CASN accredited, as this may provide the ability to make more standardized changes in curriculum, which can then be properly evaluated. 5.6 Summary This study has offered the first step in being able to assess nursing students’ attitudes toward and willingness to participate in MAiD in the Canadian context through the use of a 102 survey that utilized face and content validation techniques in its development. This research is timely, not only due to the new legislation in Canada that was enacted in 2016, but also the legislative changes that happened throughout the duration of this very study and those that are still being reviewed. Findings from this study align with the existing literature on nurses and nursing students in Canada and worldwide, and offers the first tool that can be administered to nursing students to collect data to enhance this area of research. 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International Journal of Nursing Studies, 89, 116–124. https://doi.org/10.1016/j.ijnurstu.2018.03.012 113 Appendix A Quantitative Data Extraction Table: Existing Instruments Author/Year Country Design/Instruments Purpose Sample Validity & reliability Question types Questions used/adapted for survey Bendiane et al. (2006) France Random sample, anonymous telephone survey 150 closed end questions To assess nurses’ opinions towards euthanasia and study factors associated with these opinions and attitudes. n=602 (response rate of 75%). Nurses with at least one year of professional experience. Questions were previously used in a survey with French physicians. Questionnaire was tested by 20 nurses in a pilot study. Validated by expert group including physicians, nurses and sociologists. Pearson’s x2 used to test relationships between characteristics and binary outcome. Multivariate logistics with stepwise model used to assess factors associated with attitudes towards euthanasia. Questions about nurses opinions toward the legalization of euthanasia was measures with 5 point Likert scale. Scale was then collapsed into binary outcome. Questions including personal and professional background, and attitudes toward terminal patients. -Age -Gender -Cared for terminally ill patients in las 3 years -Discussed end-of-life issues with terminally ill patients Falconer et. al (2019) Canada Anonymous online survey 47 multiple choice and open ended questions To explore Canadian medical students’ perceptions and intentions toward MAiD. n=1210 medical students from 15 of Canada’s 18 medical schools. Pilot-tested questionnaire. Tested by physicians, activists, community stakeholders, and faculty members (law, medicine & social science). Univariate descriptive analysis used to measure students willingness to participate in PAD. Stepwise multivariate logistic regression to estimate the influence of several characteristics on willingness to participate. Multiple choice and open ended questions on characteristics such as sociodemographic (age, sex, religion), childhood location, education level, professional outlook, and intention to practice PAD. -Age -Gender -Were you born in Canada -Province born -Religious attendance -Did your medical education include courses or content related to PAD -Have you ever observed or attended a death in any of the following settings -What is your current level of knowledge and understanding about the legal requirements for physicians to provide PAD - Clinical scenarios on advanced request, mature minors, and advanced directives Freeman et. al (2019) Canada Exploratory cross sectional study with use of online survey. Created new instrument: Nurse Attitudes Toward Medical Assistance in Dying (NATMS) To investigate the attitudes of Ontario palliative care nurses toward MAiD. n=239 palliative care nurses in Ontario. NATMS created and adapted from three international scales. Made minimal revisions to three surveys, with Cronbach’s alpha= 0.88. Factor analysis revealed adequate construct validity. Stepwise regression approach used to show factors related to nurses attitudes toward MAiD. Sociodemographic questions, 5 point Likert scale for questions about MAiD and professional and personal stance on MAiD and palliative care. Characteristic questions included gender, years worked in nursing, age, sex, educational level, relationship status, religion and practice setting. -Age -Gender -Religion/Faith expression -I have enough information about MAiD to take part in a discussion on the topic -I find it easy to discuss MAiD -I support physicians practicing MAiD -I support nurse practitioners practicing MAiD. -I am knowledgeable about the legal and regulatory obligations of nurses regarding MAiD. -A person must have the right to decide on his or her own death -My attitude towards MAiD is conflicted. 114 -I accept MAiD as a part of Canadian healthcare. -Your patient has asked that you be present when he uses MAID to die. I would be present at the death. -Your patient asks for a prescription for a lethal dose of drugs to kill herself. -A palliative care doctor or NP should carry out this prescription -Your patient asks his palliative doctor/NP to administer drugs to cause his death. -A palliative care doctor or NP should carry out this request. Green et. al (2020) Israel Anonymous online questionnaire A dual-view study used to explore attitudes of nurses and nursing students toward euthanasia. n=210, 90 nurses and 120 nursing students. Scale developed based on attitudes toward euthanasia scale. Cronbach’s alpha of total scale =0.90. Sections of scale in three parts: background characteristics, professional practice & attitudes toward euthanasia using a scale by (Terkamo-Moisio et al., 2017). Attitudes toward euthanasia used 5 point Likert scale . -Gender -Religiosity -Frequency of caring for terminally ill patients -The attitudes towards euthanasia scale (Terkamo-Moisio et al., 2017) (same survey questions related to attitude as Freeman 2019) Hozzeinzadeh & Rafiei (2019) Iran Descriptive cross-sectional study using convivence sampling. Self-administered questionnaire. Euthanasia Attitude Scale (EAS) Examine attitudes of nursing students in Iran. n= 382 Iranian nursing students. Panel of 10 experts reviewed scale, and test-retest reliability assessed on a sample of 20 students with Cronbach’s alpha of 0.85. Self-administered survey with sociodemographic characteristics, and 11 closed questions asking about participants level of agreement with euthanasia based on a 3 point Likert scale. -Age -Gender -In no case, I would be prepared to administer drugs in lethal doses with the explicit intention of ending the patient’s life -A person has the right to decide on the time and manner of his or her death -My view on active euthanasia is affected by my religious beliefs Inghelbrecht et. al (2009) Belgium Nationwide cross-sectional study mailed questionnaire To investigate nurses attitudes towards euthanasia. n= 3321 registered nurse sin Flanders Belgium. Draft questionnaire developed with recommendations from experts in the field (ethicist, health scientist, medical sociologist & two nurses. Focus groups of 10 nurse used to assess comprehension of questions. Questions included statement questions (measured with 5 point Likert scale), questions about nurses experience with palliative care, characteristics (sex, age, educational level, religion & importance of religion). Likert scale was collapsed to binary outcome and measured using logistic regression models. -Sex -Age -Religious affiliation/philosophy of life -Self- reported importance of religion/ philosophy of life in their professional attitudes towards medical end-of-life decisions -Ever cared for a patient at his/her end-of-life -Ever cared for a patient at his/her end-of-life (last 12 months) -Experience with medical end-of-life decisions in last 12 months Lavoie et. al (2016) Canada Cross-sectional study using questionnaire To identify psychosocial determinants of nurses’ intention to practice euthanasia in palliative care n=445 Age Gender Religious affiliation Cared for end-of-life patients 115 is legalized (pre legislation) Ozcelik et. al (2014) Turkey Descriptive questionnaire using demographic information To investigate undergraduate nursing students’ attitudes toward euthanasia n=383 Gender Have you received training courses/education on the concept of euthanasia? Questions about level of ‘for or against’ with euthanasia (ie. euthanasia is unethical, I am against euthanasia, euthanasia can be abused) 116 Appendix B Qualitative Data Extraction Table: Canadian Studies and Literature Author/Year Country Design/Methodology Purpose Items/Themes Beuthin, Bruce & Scaia (2018) Canada Descriptive narrative study and thematic analysis. Semi-structured interviews (n=17) Exploration of Canadian nurses experiences either providing care for a patient who has chosen MAiD, or nurses who chose not to participate in MAiD (within 6 months following legalization) • Did not ask about religious affiliation • Please tell me about your first experience being asked to participate in a medically assisted death and how you came to the decision to participate or not participate • What was the decision making process like for you? • Tell me about the MAiD experience itself. What was the most challenging for you? Or, in declining to participate. What concerns did you have if any? • How has this experience influenced your sense of nursing? • How do you see professional responsibilities in MAiD? • What do you consider your normal nursing practice and how does this intersect with your care for patients undergoing MAiD? McMechan, Bruce & Beuthin (2019) Canada Qualitative narrative inquiry and thematic analysis (n=9) To explore the experience of senior Canadian nursing students’ in caring for patients who chose MAiD. • Religious affiliation • Level of experience caring for patient receiving MAiD • What is your perspective on the practice of MAiD? What experiences or aspects of your life have informed this perspective? • How has your experience in nursing school, through both theory and practice, shaped your views on MAiD? How, (or) has it changed over time? • Picture a future scenario in which you are a new graduate being asked to care for a patient receiving MAiD. How does it make you feel? • What kind of preparation do you feel you need to care for a patient accessing MAiD, if any? • If applicable, please tell me about your first experience of being asked to participate in a medically assisted death and how you came to the decision to participate or not participate. Pesut, Thorne & Greig (2019) Canada Review of the ethical complexity that characterizes nurses’ participation in MAiD • Moral behavior can be determined and influenced by social norms and pressures • Nurses may not have understanding of what conscientious objection is • Many nurses are uncertain and ‘in between’ in regards to MAiD- their decisions may be based on a variety of factors • Intuition may play a role in deciding to participate with or without justification. Moral reasoning and moral intuition are complementary approaches to deciding whether or not to participate in MAiD. • Reputation or perceived reputation in community can impact decisions • Clinical scenarios most closely related to MAiD: end-of-life care decisions (ie. actively withholding treatment) • With varying interpretations of the legislation, nurses also have to factor this in to their decision making, especially in regards to safeguards. • For some nurses the decision to participate will range from simple to complex. • Defining oneself as a conscientious objector is a ‘grey area’ further complicated by vague legislative language and unclear eligibility. 117 Appendix C Full Survey: Delphi Round One 1. Please enter your age in years (text box) 2.What sex you were assigned at birth? a)Male b)Female c)Other d)Prefer not to say 3.What gender to you identify as? a)Male b)Female c)Other d)Prefer not to say 4.Please enter what country you were born in (text box) 5.Please enter what province or territory you were born in if you were born in Canada (text box) 6.What is your religion or faith expression? a)Religious but not spiritual b)Spiritual but not religious c)Religious and spiritual d)Neither religious nor spiritual 7.Religious attendance (days per week) (text box) 8.Importance of religion, spirituality or faith 1=Very unimportant 2=Somewhat unimportant 3=Neutral 4=Somewhat important 5=Very important 9.Have you cared for a patient at end-of-life? (Yes/No) 10.Have you cared for a patient at end-of-life in the last 12 months? (Yes/No) 11.Have you discussed end-of-life issues with a patient? (Yes/No) 12.Have you attended or observed a death in the practice setting? (Yes/No) 13.Have you cared for a patient who has requested MAiD? (Yes/No) 14.Have you cared for a patient who has received MAiD? (Yes/No) 118 15.Have you been in the room when a patient received MAiD? (Yes/No) 16.Did your nursing education include content on MAiD? (Yes/No) 17.What is your current level of knowledge around the legal responsibilities of the Registered Nurse in MAiD? 1=Very poor 2=Poor 3=Fair 4=very good 5=excellent 18.Do you feel like you have enough information to take part in a discussion about MAiD with other nursing students ? (Yes/No) 19.Do you feel like you have enough information to take part in a discussion about MAiD with patients? (Yes/No) 20.Are you aware of the federal legislation on MAiD Bill C-14 in Canada? (Yes/No) 21.Are you aware of the current eligibility criteria for MAiD in Canada? (Yes/No) 22.Are you aware of the safeguards in place within the MAiD legislation? (Yes/No) 23.Are you aware of the recent legislation changes for eligibility criteria (C-7) as of March 2021 for MAiD in Canada? (Yes/No) 24.I find it easy to discuss MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 25.I am in support of Nurse Practitioners providing MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 26.I am in support of Physicians providing MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 27.A person has the right to decide on their own death 1=Strongly disagree 119 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 28.Patients should have access to palliative care before accessing MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 29.My attitude towards MAiD is conflicted 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 30.I accept MAiD as part of Canadian healthcare 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 31.My view on MAiD is impacted by my religious or spiritual beliefs 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 32.My undergraduate nursing education has shaped my views on MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 33.I feel prepared to care for a client requesting MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 34.I feel as though I know what conscientious objection is 1=Strongly disagree 2=Disagree 120 3=Neutral 4=Agree 5=Strongly agree 35.I believe nurses have the right to conscientiously object to participating in MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 36.I know the steps to follow to declare conscientious objection 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 37.I am comfortable having conversations about MAiD with patients 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 38.I am willing to start an intravenous (IV) for a patient receiving MAiD 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 39.I am willing to care for patients and their families during the MAiD process 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 40.I am comfortable caring for the patients’ body after a MAiD death 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 41.I am comfortable working with families during the bereavement period following a MAiD death 1=Strongly disagree 2=Disagree 3=Neutral 121 4=Agree 5=Strongly agree 42.I am willing to assist the NP or physician to administer a MAiD death 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 43.I am willing to become a MAiD assessor in my future career 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree 44.I am willing to become a MAiD provider in my future career 1=Strongly disagree 2=Disagree 3=Neutral 4=Agree 5=Strongly agree Case study #1: MAiD and a mature minor You are working on a pediatric oncology unit and a 16 year old patient that you have been working with over the last three shifts, who is receiving treatment for terminal and incurable cancer, asks to receive MAiD 45. What is your comfort level with a mature minor’s right to make this decision? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 46. What is your comfort level with assisting the physician/NP to administer death? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 47. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 122 5=Very comfortable Case study #2: MAiD when psychiatric illness is underlying condition You are working in an acute psychiatric unit and a 41 year old client who was diagnosed ten years ago with severe depression and schizophrenia requests MAiD. The client has no other medical conditions. The client reports being no longer able to cope with their mental condition and reports daily suffering with no relief from medication. 48. What is your comfort level with a patient’s right whose sole underlying medical condition is psychiatric to make this decision? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 49. What is your comfort level with assisting the physician/NP to administer death? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 50. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable Case study #3: MAiD when death is not reasonably foreseeable You are working in home care, and a 48 year old client with Multiple Sclerosis (MS) makes a written request to their physician for MAiD. The client reports increasing pain and a significant decrease in quality of life in the last year. Currently their death is predicted to be years in the future. 51. What is your comfort level with the patients right to make this decision? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 52. What is your comfort level with assisting the physician/NP to administer death? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 123 4=Somewhat comfortable 5=Very comfortable 53. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable Case Study #4: MAiD using an advanced request You are working with a 64 year old client on the surgical unit who had a total hysterectomy for stage 4 cervical cancer, and is now four days post-operative. A scan has found metastases on the patient’s brain. The patient makes an advanced request for MAiD, fearing they will lose capacity to make a decision once the metastases progress. 54. What is your comfort level with the patients right to make this decision? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 55. What is your comfort level with assisting the physician/NP to administer death? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 56. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 1=Very uncomfortable 2=Somewhat uncomfortable 3=Neutral 4=Somewhat comfortable 5=Very comfortable 124 Appendix D Decision for Survey Questions: Delphi Round One Question Consensus Level (%) Participant Comments Decision 1. Please enter your age in years 100 “What value does knowing the age of a student have in this survey?” “Disclosure of age may potentially affect anonymity, especially in smaller cohorts or intakes. Could include a prefer not to say option” “I would put this question into categories so that no one has to provide their exact age - which could potentially identify them. e.g., less than 25; 26 to 35 etc.” Revise: Please enter your age in year (categories) 20-29 30-39 40-49 50-50 60 + 2.What sex you were assigned at birth? 90 No change 3.What gender to you identify as? 90 “These are not gender-terms, reinforces binary.” No change as per CIHR guidelines 4. Please enter what country you were born in 90 “I am thinking that being born in a country does not mean that you were raised there or identify as a member or belong to this culture. Perhaps something like Please enter the country which you identify as your main country for your upbringing” Revise: Please enter what Country you were primarily raised in 5. Please enter what province or territory you were born in if you were born in Canada 80 “Similar to previous question, you may be born in a province, but raised in another. Perhaps enter province in which you were born and raised – and have a sub question if they are not born and raised in one area.” “You may want to list the provinces and territories to reduce the work” Revise: Add drop down menu to provinces 6. What is your religion or faith expression? 90 “How often might someone describe themselves as religious but not spiritual?” “I like this question but I’m uncertain to what the definition of religious is here.” “Can you be Catholic without going to church or is it attendance at a religious organization?” “Is this an open -ended question? Not sure how helpful this will be with wide range of responses” “You may want to make this more concrete. Would you consider yourself religious and/or spiritual? The question as is implies a religion or faith expression.” “Is there going to be some sort of explanation re why this question is included in the study?” Revise: Do you consider yourself religious and/or spiritual? (Religious but not spiritual; spiritual but not religious; religious and spiritual; neither religious nor spiritual) 7. Religious attendance (days per week) 70 “…do you mean attendance at an external institute? what about daily prayer practices? just wondering about the difference between religious and spiritual definitions” “Might limit those who attend certain religious festivals or events but do not necessarily attend weekly congregation” “The question could be easily misunderstood. What exactly do you want to know? Exclude 125 Unclear if religious attendance is something one could practice at home - or if you need to be going to a church or other place of worship to be considered as attendance” “This one should only be applicable if they answer yes to religious questions in the answer above. Also you will need to pick the answers carefully as some will only attend on holidays. So make sure that you find a scale that makes sense in this context.” “I'm not sure days per week is relevant, I think if a person identifies as religious or spiritual then that should be the focus vs using days per week to indicate dedication.” 8. Importance of religion, spirituality or faith *data misconfigured, presented in round 2 unchanged 9. Have you cared for a patient at end-of-life? 90 “need to define end of life more specifically. eg. using PPS, on the last day of death, last year of life, etc... what does end of life mean?” “This is a bit vague. End of life is really someone on a dying trajectory. Perhaps have you cared for someone who has died while in your care? Or alternatively, you could provide a definition of end of life.” “Also, in the case of students I think it is important to say patient or family member?” Revise: Have you care for a patient who has died during the period of time you were looking after them? 10. Have you cared for a patient at end-of-life in the last 12 months? 90 Same response here as above. Need to define. Exclude: Previous revised question addresses this 11. Have you discussed end-of-life issues with a patient? 90 “…or been involved in discussions regarding end of life with a patient” “End of life issues are so varied and complex - I am not sure that a yes no would give much information as students dont necessarily understand what this means.” “I am wanting a glossary of terms:) Or family member. Also you should provide some examples of what these discussions might look like (e.g., advance care planning, what death is like, etc)” Revise: Have you discussed or been involved in discussions with a patient regarding end-of-life issues 12. Have you attended or observed a death in the practice setting? 100 “Include only if the previous questions specifically refer to end of life (as defined by you) and not death” “I don't understand the relevance of this question as it pertains to MAID? I think it can be excluded as keep the questions focused on the topic of MAID.” Exclude: Previous revised question addresses this 13. Have you cared for a patient who has requested MAiD? 100 No change 14. Have you cared for a patient who has received MAiD? 100 “Have you cared for a patient who later received MAiD?” Revised: Have you care for a patient who later received MAiD? 126 15. Have you been in the room when a patient received MAiD? 100 No change 16. Did your nursing education include content on MAiD? 100 “I would put this on a scale and not just yes / no” Revised: My nursing education has provided sufficient content about the nursing role in MAiD Likert scale: 1=strongly disagree, 2=disagree, 3=neutral, 4=agree, 5=strongly agree 17. What is your current level of knowledge around the legal responsibilities of the Registered Nurse in MAiD? 100 “Perhaps also add a question about responsibilities of the student? this question is clear” Revise: Please rate your understanding of the role of the Registered Nurse in MAiD? Likert Scale: 1=very poor, 2=poor, 3=fair, 4=very good, 5=excellent 18. Do you feel like you have enough information to take part in a discussion about MAiD with other nursing students ? 80 “I might want to know what year the student was in if they were answering this question-yr 1 to 4 is quite different.” “Same as above - use Likert scale” Revised: I feel like I have enough information to take part in a discussion about MAiD with other nursing students Likert Scale: 1=strongly disagree, 2=disagree, 3=neutral, 4=agree, 5=strongly agree 19. Do you feel like you have enough information to take part in a discussion about MAiD with patients? 100 “…do you need to clarify if their primary caregiver is present or not? or is this discussion independently with the client?” “I think this is a complex skill - likely requires more than just information. What does it meant "to take part" in a discussion? Not clear if the student is the only person having this discussion? Likert scale.” “Add an open-ended response if they indicate no. What do you need more information about?” “I think this goes against the scope of practice for RN's, I don't think we are allowed to do this are we? Discuss MAID? Perhaps I'm confused by the wording as it could be interpreted as advocating or recommending MAID to a patient which I know RN's can't do. “ “We normally have to defer these types of conversations to physicians is my understanding.” Exclude 127 20. Are you aware of the federal legislation on MAiD Bill C-14 in Canada? 100 “Do you want to know if they also understand the bill?” “Would a Likert type scale derive more information ?” “Should read/include Bill C-7. Bill C-14 was amended in March 2021. This one reads as if it the current bill.” “Likert scale so that they can indicate their degree of awareness. How comfortable are you with the eligibility criteria and safeguards contained in Bill C-14” Exclude: Determined with committee that this overlaps with eligibility criteria (next questions) 21. Are you aware of the current eligibility criteria for MAiD in Canada? 90 “Include, but would a Likert type scale derive more information ?” Revised: I know the current eligibility criteria for MAiD in Canada Likert scale: 1=not at all aware, 2=slightly aware, 3=somewhat aware, 4=moderately aware, 5=extremely aware 22. Are you aware of the safeguards in place within the MAiD legislation? 90 “Include, but would a Likert type scale derive more information ?” Revised: I know the current safeguards in place within the MAiD legislation Likert scale: 1=not at all aware, 2=slightly aware, 3=somewhat aware, 4=moderately aware, 5=extremely aware 23. Are you aware of the recent legislation changes for eligibility criteria (C-7) as of March 2021 for MAiD in Canada? 100 “Include, but would a Likert type scale derive more information ?” “Likert scale to indicate level of knowledge of eligibility criteria and safeguards” Exclude: Overlaps with question on eligibility criteria & safeguards 24. I find it easy to discuss MAiD 100 “discuss maid in class? with patients? at any time? just wondering if it matters who the student feels comfortable discussing MAiD with? Did you want to clarify? I would argue it does.” “Students may feel comfortable talking about it with instructors/peers but not with practitioners or patients, or vice versa” “discuss with whom? other students? instructors? patients? etc.?” Exclude: Unclear question 25. I am in support of Nurse Practitioners providing MAiD 100 “I wonder if this should be "nurses' participation in providing MAiD" or something like this.” “Break this into two questions: assessing for MAID then providing MAID” No change 26. I am in support of Physicians providing MAiD 100 No change 128 27. A person has the right to decide on their own death 100 “On the timing of their own death” Revised: A person has the right to decide on the timing of their own death 28. Patients should have access to palliative care before accessing MAiD 90 “I like the question, but wonder if the students understand the difference between palliative approach and palliative care.” Exclude: Supervisor noted this could be misinterpreted since palliative care must be offered before MAiD. 29. My attitude towards MAiD is conflicted 100 “I wonder if the use of the word conflicted is a bit leading and may suggest something negative. Unless you're trying to tease out conflict specifically. Just a thought....” “I think other questions will capture this information” No change 30. I accept MAiD as part of Canadian healthcare 100 No Change 31. My view on MAiD is impacted by my religious or spiritual beliefs 100 “I like this question and I'm wondering if views on MAiD can be impacted by more than religion and spirituality. Can another question be added?” Revised: *Three additional questions added: Family, co-workers, friends 32. My undergraduate nursing education has shaped my views on MAiD 100 No change 33. I feel prepared to care for a client requesting MAiD 100 No change 34. I feel as though I know what conscientious objection is 100 “I think I know... (vs feel)” “Include a comment around conscientious objection in relation to what is defined by the licensing board. Also an understanding of what the responsibility of the RN is when they exercise the choice to object.” “Reword: "I understand what is meant by conscientious objection" Revised: I understand what is meant by conscientious objection? 35. I believe nurses have the right to conscientiously object to participating in MAiD 100 “Perhaps should be a skip pattern here so only those who know that this means are asked this question.” Revised: Changed to skip pattern (only will show for those who answered ‘agree’ or ‘strongly agree to question #34) 36. I know the steps to follow to declare conscientious objection 100 “Skip pattern as suggested for 35, question only offered to respondents who know what this means.” Revised: Changed to skip pattern (only will show for those who answered ‘agree’ or ‘strongly agree to question #34) 37. I am comfortable having conversations about MAiD with patients 100 “I think this is repetitive from the previous question about taking part in discussions.” “Is there a reason this question is asked twice in the survey?” Exclude: Accidental repeat question 129 “Exclude, I think you already asked this question earlier on” 38. I am willing to start an intravenous (IV) for a patient receiving MAiD 100 “Would a student be allowed to do this? If out of their scope of practice, should be removed, or state in future tense: As an RN, I would be willing....” Revised: As an RN I would be willing to start an intravenous (IV) for a patient receiving MAiD 39. I am willing to care for patients and their families during the MAiD process 100 “Add care within my scope?” Revised: I am willing to care for patients and their families during the MAiD process within my scope of practice 40. I am comfortable caring for the patients’ body after a MAiD death 100 No change 41. I am comfortable working with families during the bereavement period following MAiD death 100 No change 42. I am willing to assist the NP or physician to administer a MAiD death 100 “I am curious about the choice of the word death-in my mind I consider them to be administering medication which leads to death, vs administering death.” “RNs cannot administer - this needs to be written differently.” Revised: I am willing to assist the NP or physician to administer a MAiD death within my scope of practice 43. I am willing to become a MAiD assessor in my future career 100 “Might want to ask a question around if the student knows what a MAiD Assessor is.” “I would exclude - feels like a career change would be needed as RN's won't do this.” No change 44. I am willing to become a MAiD provider in my future career 100 “I would exclude - feels like a career change would be needed as RN's won't do this.” No change Case study #1: MAiD and a mature minor 45. What is your comfort level with a mature minor’s right to make this decision? 100 No Change 46. What is your comfort level with assisting the physician/NP to administer death? 100 “Are you looking at the student nurses capacity currently” “I believe their involvement as a student will look much different in comparison to when they graduate perhaps include ....to administer death to a mature minor?” “Administer death?” “should be provide "MAiD" - not sure why "death" is used here. Is there a reason for this? administer MAID to a mature minor” Revised: What is your comfort level within your scope of practice with assisting the physician/NP to administer MAID to a mature minor? 130 47. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 90 “I don't think the word death needs to be included after MAID. Death is part of MAID.” “Do you mean in this situation? or generally?” “To a mature minor” Revised: What is your comfort level with providing MAiD in the future to a mature minor if you were a qualified NP? Case study #2: MAiD when psychiatric illness is underlying condition 48. 100 No change 49. What is your comfort level with assisting the physician/NP to administer death? 100 “perhaps clarify in this case or with someone who has solely a psychiatric medical condition.” “Use MAID not death” “Again - wondering why "death" is used and not MAiD.” “to a patients whose sole underlying condition is psychiatric” Revised: What is your comfort level within your scope of practice, with assisting the physician/NP to administer MAID to a patient whose sole underlying medical condition is psychiatric 50. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 90 “Remove death” “Perhaps it should be clear that the pt met all of the criteria for consenting to MAiD” “specify psychiatric illness as underlying condition (as above)” Revised: What is your comfort level with providing MAiD in the future to a patient whose sole underlying medical condition is psychiatric if you were a qualified NP? Case study #3: MAiD when death is not reasonably foreseeable 51. What is your comfort level with the patients right to make this decision? 100 “Patient's right-needs an apostrophe” “Typo - should be "the patient's right" “Reiterate condition "natural death not reasonably foreseeable'” Revised: What is your comfort level with a patient’s right whose death is not reasonably foreseeable to make this decision? 52.What is your comfort level with assisting the physician/NP to administer death? 100 “Remove death” “Perhaps again - that all criteria have been met” “See above” Revised: What is your comfort level with assisting the physician/NP within your scope of practice to administer MAID to a patient whose death is not reasonably. 53. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 90 Revised: What is your comfort level with providing MAiD in the future to a patient whose death is not reasonably foreseeable if you were a qualified NP? Case Study #4: MAiD using an advanced request 90 “Add advance request to all stems” Revised: What is your comfort level with a patient’s right to make an 131 54. What is your comfort level with the patients right to make this decision? advance request for MAiD? 55. What is your comfort level with assisting the physician/NP to administer death? 100 “As previous” “Use MAID instead of death” “Same as noted previously” Revised: What is your comfort level with assisting the physician/NP within your scope of practice to administer MAID to a patient using an advanced request? 56. What is your comfort level with providing a MAiD death in the future if you were a qualified NP? 90 “Remove death” Revised: What is your comfort level with providing MAiD in the future to a patient using an advanced request if you were a qualified NP? 132 Appendix E Final Survey for Focus Group Interview Part 1: Demographic Questions: Please answer the following questions about yourself. 1.Please enter your age in years a) Less than 20 b) 20-29 c) 30-39 d) 40-49 e) 50-59 f) 60 or greater 2.What sex you were assigned at birth? a)Male b)Female c)Other d)Prefer not to say 3.What gender to you identify as? a)Male b)Female c)Other d)Prefer not to say 4.Please enter what country you were primarily raised in 5.Please enter what province or territory you were born in if you were born in Canada (drop down menu) 6.Do you consider yourself religious and/or spiritual? a)Religious but not spiritual b)Spiritual but not religious c)Religious and spiritual d)Neither religious nor spiritual 7. How important is religion and/or spirituality for you? (question will only show is answered a, b, or c in question #6) 1=Very unimportant 2=Somewhat unimportant 3=Neutral 4=Somewhat important 5=Very important 133 Part 2: Experience with end of life and MAID: Please tell us about your experiences with dying patients and MAID. 8. Have you cared for a patient who has died during the period of time you were looking after them? a) Yes b) No 9. Have you discussed or been involved in discussions with a patient regarding end-of-life issues? a) Yes b) No 10.Have you care for a patient who has requested MAiD? a) Yes b) No 11.Have you cared for a patient who later received MAiD? a) Yes b) No 12. Have you been in the room when a patient received MAiD a) Yes b) No Part 3: Knowledge of MAID: Please indicate your agreement/disagreement with the following questions 13. My nursing education has provided sufficient content about the nursing role in MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 14. I understand the role of the Registered Nurse in MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 134 15. I have enough information to take part in a discussion with other nursing students about MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 16. I know the current eligibility criteria in place within the MAiD legislation a) 1=Not at all aware b) 2=Slightly aware c) 3=Somewhat aware d) 4=Moderately aware e) 5=Extremely aware 17. I know the current safeguards in place within the MAiD legislation a) 1=Not at all aware b) 2=Slightly aware c) 3=Somewhat aware d) 4=Moderately aware e) 5=Extremely aware 18. I feel prepared to care for a client requesting MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 19. I understand what is meant by conscientious objection a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 20. I know the steps to follow to declare contentious objection (will only show for students who answered ‘agree’ or ‘strongly agree’ to question # 19) a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree 135 e) 5=Strongly agree Part 4: Agreement/Disagreement with MAID: Please tell us about your feelings about MAID. 21.I am in support of Nurse Practitioners providing MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 22.I am in support of Physicians providing MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 23.A person has the right to decide on the timing of their own death a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 24.My attitude towards MAiD is conflicted a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 25.I accept MAiD as part of Canadian healthcare a) 1=Strongly disagree b) 2=Disagree b) 3=Neutral c) 4=Agree d) 5=Strongly agree 136 26. I believe nurses have the right to conscientiously object to participating in MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 27. My view on MAiD is impacted by my religious or spiritual beliefs a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 28. My view on MAiD is impacted by my family 29. My view on MAiD is impacted by my co-workers A )1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 30. My view on MAiD is impacted by my friends a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 31. My view on MAiD is impacted by my personal and/or professional experiences a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 32. My undergraduate nursing education has helped shape my views on MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 137 Part 6: Willingness to participate in roles related to MAID: Please indicate what you would be willing to participate in as an RN or NP 33. As an RN I would be willing to start an intravenous (IV) for a patient receiving MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 34.I am willing to care for patients and their families during the MAiD process within my scope of practice a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 35.I am willing to care for the patients’ body after a MAiD death a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 36.I am willing to care for families during the bereavement period following a MAiD death a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 37.I am willing to assist the NP or physician to administer a MAiD death within my scope of practice a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 38.I am willing to become a MAiD assessor in my future career (if I was an NP) a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 39.I am willing to become a MAiD provider in my future career (if I was an NP) 138 a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree Part 7: Clinical Scenarios MAID is now available to those whose natural death is not reasonably foreseeable. Further, there are several populations who are currently under consideration of becoming eligible to request MAID: mature minors those with psychiatric illness as the primary underlying condition, and those desiring to complete an advanced request for MAID. We are interested in your comfort with MAID under these special considerations. Case study #1: MAiD when death is not reasonably foreseeable You are working in home care, and a 48 year old client with Multiple Sclerosis (MS) makes a written request to their physician for MAiD. The client reports increasing pain and a significant decrease in quality of life in the last year. Currently their death is predicted to be years in the future 40. What is your comfort level with a patients’ right to make this decision whose death is not reasonably foreseeable? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 41. What is your comfort level, within your scope of practice, with assisting the physician/NP to administer MAiD to a patient whose death is not reasonably foreseeable? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 42. What is your comfort level with providing a MAiD death in the future to a patient whose death is not reasonably foreseeable if you were a qualified NP? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable Case Study 2: MAiD and mature minor who’s death is reasonably foreseeable 139 You are working on a pediatric oncology unit and a 16 year old patient that you have been working with over the last three shifts, who is receiving treatment for terminal and incurable cancer, asks to receive MAiD 43. What is your comfort level with a mature minors right whose death is reasonably foreseeable to make this decision? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 44. What is your comfort level, within your scope of practice, with assisting the physician/NP to administer MAiD to a mature minor whose death is reasonably foreseeable? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 45. What is your comfort level with providing MAiD in the future to a mature minor whose death is reasonably foreseeable if you were a qualified NP? A )1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable Case study #3: MAiD when psychiatric illness is underlying condition You are working in an acute psychiatric unit and a client who was diagnosed ten years ago with severe depression and schizophrenia requests MAiD. The client has no other medical conditions. The client reports being no longer able to cope with their mental condition and reports daily suffering with no relief from medication 46. What is your comfort level with a patients’ right whose sole underlying medical condition is psychiatric to make this decision? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 47. What is your comfort level, within your scope of practice with assisting the physician/NP to administer MAiD to a patient whose sole underlying medical condition is psychiatric? a) 1=Very uncomfortable 140 b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 48. What is your comfort level with providing MAiD in the future to a patient whose sole underlying medical condition is psychiatric if you were a qualified NP? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable Case Study #4: MAiD using an advanced request You are working with a client on the surgical unit who had a total hysterectomy for cervical cancer, and is now four days post-operative. A scan has found metastases on the patient’s brain. The patient makes an advanced request for MAiD, fearing they will lose capacity to make decision once the metastases progress. 49. What is your comfort level with a patients’ right to make an advanced request for MAiD? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 50. What is your comfort level, within your scope of practice, with assisting the physician/NP to administer MAiD to a patient using an advanced request? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 51. What is your comfort level with providing MAiD in the future to a patient using an advanced request if you were a qualified NP? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 141 Appendix F Discussion Guide for Focus Group Cognitive Interview Framework: Semi-scripted: Adapted from Willis (2005) Interview Timing: Approximately 60-90 minutes Prior to Interview: Interviewer will arrive 15 minutes early to test technology Introduction & Review of Consent: “Welcome everyone to the session, thank the participants for coming, and ensure everyone’s Zoom microphone is working. Introduce self and allow for student introductions” Review consent form: See consent for students Selkirk College Explanation of purpose of study: “The purpose of this study to develop and initially validate a survey that can be utilized at a future date to examine nursing students’ attitudes toward, and willingness to participate in, Medical Assistance in Dying (MAID) in the Canadian context. Currently there are no known quantitative studies with nursing students in the Canadian context, and there are no existing surveys that could be adapted for the purpose of this future research. During this interview the goal is for you to review questions and comment on the clarity and wording of the questions.” Audio Recording of Interview: “Please note this focused group interview will be audio recorded, and through the interview I will also be taking notes.” Request permission to record session. Preparing and training for the ‘think aloud’ technique: “Thinking aloud is talking through your thought process out loud to the group. The think aloud technique can be used to capture your understanding of each survey question and help you articulate its clarity. There are no wrong answers, I am interested in knowing what you are thinking” Sample practice question: “Try to visualize a place where you’ve lived. It could be your current home or a place you’ve lived in the past. As you think about that place, think about how many windows there are in that Synchronous interview with 5- 10 participants Participants 'think aloud' individually and comment on items Verbal probing techniques by interviewerGroup dicussion, questions & closing 142 place or in part of that place if it’s very large. As you move through the place and count the windows, tell me what you are seeing and thinking about.” (Willis, 1994) Probe examples that may be used following questions: “Following the think aloud technique, you may be asked verbal probe questions to further explore your answer and understanding of the questions. Examples of verbal probes that may be used during the interview include”: 1. Can you repeat the question in your own words? 2. Can you tell me in your own words what this question is asking? 3. Can you tell me what you were thinking when you read this question? 4. What does the word (x) mean to you when its used in this question? 5. How well does this question apply to you? 6. Can you tell me more about your opinion on that? 7. How did you arrive to this answer? 8. Was this easy or difficult to answer? 9. Can you think of any other reasons? 10. How much have you thought about (x)? 11. Is it OK to talk about this survey question or is it uncomfortable? 12. The question used the word (X), does that sound OK to you? Or would you choose something different? If students begin to discuss personal views about MAiD, the interviewer will provide a reminder to avoid discussing personal views and return to the discussion about the survey by moving on to the next question or re stating the previous question. Question period before beginning: “Are there any questions about the consent, the ‘think aloud’, or verbal probing techniques before we begin the interview?” “We will now get started with the cognitive interview” Instructions: 1. Please open the attached file the contains the survey questions. 2. Please read the survey instructions carefully and we will discuss any questions you have about wording or any areas that may be unclear before moving to question #1. 3. Read through the first interview question aloud to yourself (on mute) and then use the ‘think aloud’ technique to describe the question clarity within the group with microphone. When you are ready to think aloud, please use the ‘raise hand’ function on Zoom. 4. You will now repeat this think aloud technique as a group after reading each question Closing Discussion and Questions: 143 “Thank you very much for your participation in this interview. Please feel free to share any final comments you have, or anything additional you would like to add” “Are there any more questions?” Stop interview and record time. 144 Appendix G Final MAiD Survey Nursing students’ attitudes toward, and willingness to participate in MAiD in the Canadian Context 145 Part 1: Demographic Questions: Please answer the following questions about yourself. 1. Please enter your age in years g) Less than 20 h) 20-29 i) 30-39 j) 40-49 k) 50-59 l) 60 or greater 2. What gender do you identify as? a) Female b) Male c) Non-binary d) Prefer to self-describe 3. Please enter what country you were primarily raised in 4. Please enter what province or territory you were born in, if you were born in Canada (drop down menu, question will only appear if selected Canada in question #4) 5. How important is religion to you? a) 1=Very unimportant b) 2=Unimportant c) 3=Neutral d) 4=Somewhat important e) 5=Very important 6. How important is spirituality to you? a) 1=Very unimportant b) 2=Unimportant c) 3=Neutral d) 4=Somewhat important e) 5=Very important 146 Part 2: Experience with end of life 7. Have you cared for a patient who has died during the period of time you were looking after them? a) Yes b) No 8. Have you discussed or observed discussions with a patient regarding end-of-life issues? a) Yes b) No 9. Have you cared for a patient who was actively considering MAiD? a) Yes b) No 10. Have you cared for a patient who later received MAiD? a) Yes b) No c) Unsure 11. Have you been in the room when a patient received MAiD? a) Yes b) No 147 Part 3: Knowledge of MAiD 12. My nursing education has provided enough content for me to care for a patient considering or receiving MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly Agree f) 6=Unsure 13. I understand the role of the Registered Nurse in MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly Agree 14. I have enough understanding about MAiD to take part in a meaningful discussion with other nursing students a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 15. I know the current eligibility criteria in place within the MAiD legislation a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 16. I know the current safeguards in place within the MAiD legislation a) 1=Not at all aware 148 b) 2=Slightly aware c) 3=Somewhat aware d) 4=Moderately aware e) 5=Extremely aware 17. I feel prepared to care for a client requesting MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 18. I understand what is meant by conscientious objection a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 19. I believe nurses have the right to choose not to participate in MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 20. I know the steps to follow if I as a nurse choose not to participate in MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 149 Part 4: Opinions about MAiD 21. My attitude towards MAiD is conflicted a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 22. I am in support of Nurse Practitioners providing MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 23. I am in support of Physicians providing MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 24. A person has the right to decide on the timing of their own death a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 25. I believe MAiD should be a part of the Canadian healthcare system a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 150 Part 5: Influences on my beliefs about MAiD 26. My view on MAiD is influenced by my religious or spiritual beliefs a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 27. My view on MAiD is influenced by my family a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 28. My view on MAiD is influenced by my co-workers a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 29. My view on MAiD is influenced by my friends a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 30. My view on MAiD is influenced by my personal experiences a) 1=Strongly Disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 151 31. My view on MAiD is influenced by my professional experiences a) 1=Strongly Disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 32. My undergraduate nursing education has influenced my views on MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 152 Part 6: Willingness to participate in roles related to MAiD 33. As an RN I would be willing to start an intravenous (IV) for a patient receiving MAiD a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 34. I am willing to care for patients and their families during the MAiD process within my scope of practice a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly agree 35. I am willing to care for the patient’s body after a MAiD death a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly Agree 36. I am willing to care for families during the bereavement period following a MAiD death a) 1=Strongly disagree b) 2=Disagree c) 3=Neutral d) 4=Agree e) 5=Strongly Agree 37. I am willing to assist the NP or physician to administer a MAID death within my scope of practice a) 1=Strongly disagree b) 2=Disagree 153 Part 7: Clinical Scenarios MAiD is now available to those whose natural death is not reasonably foreseeable (in other words they are not at end of life). Further, there are several populations who are currently under consideration of becoming eligible to request MAiD: mature minors (adolescents under the age of 18 who can give legal consent, who have demonstrated decision making capacity, and who understand the consequences of medical treatment), those with psychiatric illness as the primary underlying condition, and those desiring to complete an advanced request for MAiD. We are interested in your comfort with MAiD under these special considerations. Case Study 1: MAiD when death is not reasonably foreseeable You are working in home care, and a 48 year old client with Multiple Sclerosis (MS) makes a written request to their physician for MAiD. The client reports increasing pain and a significant decrease in quality of life in the last year. Currently their death is predicted to be years in the future. 38. What is your comfort level with a patients’ right to choose MAID whose death who is not reasonably foreseeable? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 39. What is your comfort level, within your scope of practice, with assisting the physician/NP to administer MAiD to a patient whose death is not reasonably foreseeable? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable c) 3=Neutral d) 4=Agree e) 5=Strongly agree 154 Case Study 2: MAiD and mature minor You are working on a pediatric oncology unit and a 16 year old patient that you have been working with over the last three shifts, who is receiving treatment for terminal and incurable cancer, asks to receive MAiD. 40. What is your comfort level with a mature minor’s right to choose MAID? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 41. What is your comfort level, within your scope of practice, with assisting the physician/NP to administer MAiD to a mature minor? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable Case Study 3: MAiD when psychiatric illness is underlying condition You are working in an acute psychiatric unit and a client who was diagnosed ten years ago with severe depression and schizophrenia requests MAiD. The client has no other medical conditions. The client reports being no longer able to cope with their mental condition and reports daily suffering with no relief from medication. 42. What is your comfort level with a patients’ right to choose MAID whose sole underlying medical condition is psychiatric? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 155 43. What is your comfort level, within your scope of practice, with assisting the physician/NP to administer MAiD to a patient whose sole underlying medical condition is psychiatric? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable Case Study 4: MAiD using an advanced request You are working with a client on the surgical unit who had a total hysterectomy for cervical cancer, and is now four days post-operative. A scan has found metastases on the patient’s brain. The patient makes an advanced request for MAiD, fearing they will lose capacity to make a decision once the metastases progress. 44. What is your comfort level with a patients’ right to make an advanced request for MAiD? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 45. What is your comfort level, within your scope of practice, with assisting the physician/NP to administer MAiD to a patient using an advanced request? a) 1=Very uncomfortable b) 2=Somewhat uncomfortable c) 3=Neutral d) 4=Somewhat comfortable e) 5=Very comfortable 156
Thesis/Dissertation
eng
Nursing
Vancouver : University of British Columbia Library
Attribution-NonCommercial-NoDerivatives 4.0 International
Graduate
Pesut, Barbara
Nursing students' attitudes toward, and willingness to participate in Medical Assistance in Dying (MAiD) in the Canadian context : survey development
Text