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Nurses' role in a dignified death for patients with end stage chronic obstructive pulmonary disease :… Pannu, Kamaldeep Aug 31, 2017

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NURSES’ ROLE IN A DIGNIFIED DEATH FOR PATIENTS WITH END STAGE CHRONIC OBSTRUCTIVE PULMONARY DISEASE: AN INTEGRATIVE LITERA-TURE REVIEWby KAMALDEEP PANNU BSN, Kwantlen Polytechnic University, 2008 A SPAR PROJECT SUBMITTED IN PARTIAL FULFILLMENT OF  THE REQUIREMENTS FOR THE DEGREE OF  MASTER OF SCIENCE IN NURSING in The Faculty of Graduate and Postdoctoral Studies  (Nursing) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) August 2017
© Kamaldeep Pannu, 2017 
NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                2                                                                                                                                       
Abstract As a critical care nurse, I have witnessed gaps in front line nurses’ consistent inclusion in pallia-tive care discussions with patients and families within interdisciplinary team context. This inte-grative literature review examines the factors contributing to front line nurses’ inconsistent in-volvement in palliative care decision-making process specific to patients with chronic conditions in their final stage of life such as patients with end stage Chronic Obstructive Pulmonary Disease (COPD), and within a palliative care framework. These factors were envisioned from the health care professionals, as well as from the patient perspectives. Health care professionals related bar-riers include bedside nurses’ lack of training in end of life care, and attending doctor’s inconsis-tent preference for inclusion of nurses in palliative care discussions. Patient related factors in-clude lack of communication about goals of care with patients and families. Findings drawn from this review informs recommendations to break barriers intruding frontline staff nurses’ consistent inclusion in palliative care discussions. Findings from other grey literature have also been in-cluded to synthesize the recommendations to break the barriers to successful involvement of nurses in palliative care decisions. Recommendations focused on nurses’ training and education in the context of their work environment to improve the successful involvement of nurses in PC decision-making process in acute care settings, with the goal of enhancing quality PC care. The conceptual framework of a palliative approach is utilized  to underpin the arguments and integra-tive literature review for this project paper. Key words of Palliative Care (PC), End-of-life care (EOLC), palliative approach, PC decision-making process, PC discussions, bedside nurses and attending doctors have been used throughout this paper.  NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                3Lay Summary The key goal of this project paper is to improve the successful involvement of frontline nurses in palliative care decision-making processes, which underpins the quality of palliative care. In order to improve the role of nurses in the decision-making process, it is important to investigate the barriers in the way of successful involvement of nurses in palliative care discussions. An in-depth, integrative review of the literature has been used to conduct this project. Overall, this pa-per examines barriers and then recommends strategies to break the barriers intruding the success-ful involvement of frontline nurses in palliative care decision-making process to improve the quality of palliative care in acute care settings.
NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                4
Preface This SPAR project is original, unpublished and independent work by the author Kamaldeep Pan-nu. NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                5

TABLE OF CONTENTS Abstract…………………………………………………………………………………..2 Lay Summary…………………………………………………………………………….3 Preface…………………………………………………………………………..………..4 Table of Contents……………………………………………………………………..….5 List of Tables……………………………………………………………………………..7 Acknowledgments………………………………………………………………………..8 CHAPTER 1: Background and Research Question……………………………………9 1.1 Introduction…………………………………………………………………….…….9 1.2 Background…………………………………………………………………….…….13 1.3 Problem statement……………………………………………………………………14 1.4 Research questions…………………………………………………………….……..15 1.5 Conceptual framework………………………………………………………………15  1.5.1 Palliative care as holistic care…………………………………………..…17  1.5.2 The palliative approach as patient and person-centred care……………..…17 1.6 Methods……………………………………………………………………………….19  1.6.1 Problem identification and literature search………………………….……..21  1.6.2 Data collections and selection of relevant studies…………………………..22  1.6.3 Organization of Study……………………………………………………….24 CHAPTER 2: Analysis of Findings From the Selected Studies Methods………………..25 NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                6 CHAPTER-3: Discussion of the Findings……………………………………………..36 3.1: Several Roles of Bedside Nurses in PC Decision-making Process………………..36 3.2: Role Ambiguity of Bedside Nurses in the PC Decision-making Process………….37 3.3: Patient and Family-member Related Barriers to PC Decision-making Process……39 3.4: Health Care Professionals Related Barriers to PC Decision-making Process………39 3.5: Summary of Recommendations from the Integrative Literature Review……………40 CHAPTER-4: Conclusion and Recommendations……………………………………….42 4.1: Short Summary…………………………………………………………………………42 4.2: Key Recommendations…………………………………………………………………43 References……………………………………………………………………………………47 


NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                7

LIST OF TABLES Table 1.6.2 Studies selected for integrative literature review………………………..23 Table 2.1 Chronological overview of articles included within the integrative literature re-view by authors, year, study design and main themes………………………………..25 NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                8

ACKNOWLEDGEMENTS I would like to express my special appreciation and thanks to my advisor Professor Dr. Geertje Boschma, you have been a tremendous mentor for me. I would like to present the warm-est gratitude for your invaluable encouragement throughout this project. I could not accomplish this project to its fullest strength without your brilliant feedback. To my committee member, Dr. Patricia Rodney, I am grateful for your support and suggestions during this project. A very special thanks to my dear family, my words can not express how grateful I am to my mother-in-law, father-in-law and my beloved husband, Harwinder for their unwavering sup-port throughout my journey. A special appreciation for my beloved son, Jaskaran, and daughters, Jasleen and Gurleen, for their constant love and unyielding support throughout my endeavours. I would like to acknowledge my mother and sisters, Gagan and Saman, for believing in me. Finally, I have a special gratitude for my father, whose actions and words of wisdom inspired me to continue with my journey. NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                9CHAPTER 1: Background and Research Question 1.1 Introduction In this paper I am undertaking an exploration of the way nurses may support a dignified death in the palliative care (PC) of patients with chronic conditions in their final stage of life such as patients with end stage Chronic Obstructive Pulmonary Disease (COPD). In doing so, I am inspired by my work experience composed of working with patients with chronic, life-limit-ing conditions, particularly patients with end stage Chronic Obstructive Pulmonary Disease (COPD), who experience unmet palliation needs. Flannery, Ramjan, and Peters (2016) indicate in their critical literature review that nurses are not frequently included in the end of life decision making process. Further, they illustrate that nurses’ infrequent inclusion and role ambiguity are the major challenges to the successful involvement of critical care nurses in end of life care deci-sion-making process within collaborative teams and family meetings. The main goal of this pa-per is to review recent studies on nurses’ role in this complex domain of nursing care and draw recommendations for improvement from an examination of the findings of these studies and oth-er grey literature, using an integrative literature review approach.  As end of life care (EOLC) and palliative care (PC) are terms interchangeably being used throughout this paper, it is to be noted that they are very similar except one difference. PC is in-tended to improve a person’s quality of life until death once a life-limiting condition is diagnosed (Carstairs, 2010; WHO, 2017), while EOLC is also provided to improve the quality of living un-til death, but it refers to care initiated in the final stage of dying (Carstairs, 2010).   I work in a high acuity area, where approximately more than half of the patient population are afflicted with life-limiting respiratory illnesses, including COPD. These patients are either NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                10supported with non-invasive (NIV) or invasive forms of ventilation (Moerer & Harnisch, 2016). The NIV form includes any kind of ventilatory support not requiring an artificial airway, such as an endotracheal tube or a tracheostomy (Smith, Davidson, Lam, Jenkins, & Ingham, 2012). Bilevel Positive Airway Pressure (BIPAP) is a common form of NIV utilized in acute care areas to relieve dyspnea (Credland, 2013; Moerer & Harnisch, 2016).  This type of ventilation is wide-ly applied for acute exacerbations of COPD (Moerer & Harnisch, 2016). BIPAP is applied by means of a machine that provides pressurized air during inhalation and exhalation using a mask, and it monitors breathing via an electronic circuit (Credland, 2013). Despite its popular medical use, I have observed that most elderly patients do not like a Bilevel Positive Airway Pressure (BIPAP) mask, for example, because of the discomfort it brings with its use in the form of skin breakdown in the regions of contact pressure between the mask and the patient’s skin. The de-velopment of skin ulceration has a potential to reduce the tolerance of the mask and the success rate of BIPAP (Yamaguti et al., 2014). Thus, the discomfort attached with a BIPAP mask does not provide the comfort implied by PC, hence further obstructs the dignified PC for these pa-tients. In addition to physiological implications of BIPAP use, there are ethical implications too. C. M. Quill, Sussman, and  Quill  (2015) address these ethical implications as burdens of NIV.  For instance, they indicate in their study that if the  NIV has a potential to medically prolong the dying process or to add to suffering or to prevent communication and intimacy with patient’s loved ones at the end of life, it is burdensome as a palliative intervention. Patients and families deserve to be well-informed of these ethical implications in order to decide for the best interest of each patient’s goals of care. Nevertheless, during my practice as a bedside nurse, I have ob-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                11served gaps in the knowledge and choices in care provided to patients and their families with re-gard to physiological and ethical implications of BIPAP use, although a  significant amount of literature advocates for patients and families’ right to know this information (Credland, 2013; Quill et al., 2015). Thus, frank discussions with the patients and their families about priorities of care and end-of-life decisions seem not to be systematically to be included in care and treatment planning. In this paper, it is my premise that the vulnerable population of patients with COPD and their families need to be adequately involved in the decision-making process about their end-of-life care, and nurses, particularly critical care nurses, need to be better enabled to facilitate such involvement.    Communication is identified as a major barrier in the way of adequate involvement of patients and families in the decision making process about EOLC. Improved communication with families about end-of-life care is a longstanding and growing topic in the literature (Fakhri et al., 2016). Several factors might influence patient and families’ preferences for communication about palliative care. Some factors might include depressive and anxiety symptoms, as well as religious and spiritual values of patients and families, and so  the understanding of these factors by health care providers may help facilitate improved discussions about goals of care (Fakhri et al., 2016). Also, strong communication and trust are considered the foundation of person-centred care, which is defined as an approach to care delivery to ensure the care is responsive to individ-ual needs and values (CNA, CHPCA, & CHPCA-NG, 2015). Both Fakhri et al.’s (2016) study and the joint position statement of the Canadian Nurses Association, the Canadian Hospice Pal-liative Care Association, and the Canadian Hospice Palliative Care Association Nurses Group (CNA, CHPCA, & CHPCA-NG, 2015) support the argument that patients might gain dignity, NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                12and be empowered in the unpredictable dying process if the goals of care are discussed with them in a timely manner in a scheduled family meeting. Therefore, it is important to examine how nurses’ facilitative role can be improved to support such meetings are held in a timely man-ner. As a critical care nurse, I have experienced that I cannot always attend family meetings with other inter-disciplinary team members, either due to the high acuity of another patient under my care or due to the staffing issues. Nevertheless, I have observed that early family meetings with some form of bedside nurse’s involvement, ease anxiety for the patient and families, and families have less questions regarding the goals of care for the bedside nurse, after the meeting.   Timely discussions regarding each patient’s disease prognosis and goals of care are paramount to improve quality of end of life care in COPD patients (Tsim & Davidson, 2014). Here, I would argue that nurses cannot always be part of the team meeting because of environ-mental factors, such as increased workload. However, they still might play a crucial role to ob-serve whether a team meeting should take place or not depending on the patient’s disease pro-gression, and they can communicate such observation with the team. Furthermore, once the time-ly family meeting takes place, it will empower the patients and families to feel well-supported in their end of life decision-making process. Also, such empowerment of patients and families by nurses will further enhance the role clarity of nurses in their end of life care for their patients.   In this project, I propose to explore the significance of the nurses’ role in facilitating communication with families and teams as evidenced in current studies, using the concept of a palliative approach as a rationale and framework to guide the integrative literature review. This will further shed light on the role of nurses in end of life care planning and, drawing from that NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                13understanding, I will examine existing evidence about the barriers and promises to the successful role of nurses in delivering an optimal palliative care for life-limiting respiratory illnesses such as COPD, when it comes to family meetings with the care team. The rationale for my interest in these issues of concern is to improve the care practice for this population and beyond in my prac-tice setting and others. For example, the recommendations for high quality end of life care for chronic conditions, such as heart failure, COPD, neurological diseases and several other chronic conditions is evidenced in a vast amount of literature (Sawatzky et al., 2016). Thus, it seems im-portant to explore this literature more specifically for what it has found and recommends with regard to the role of nurses. A better understanding of the nurse’s role based on a systematic ex-amination of the research findings in relevant recent studies can generate useful recommenda-tions. The recommendations from this review project should be transferrable to various other practice settings relevant to care of patients with chronic conditions such as COPD and beyond. In addition, these findings should help nurses to better understand and enact their role in the pro-vision of timely family meetings with the interdisciplinary team. Furthermore, this understanding on the part of nurses will, if acted upon in practice, improve palliative care outcomes for the pa-tients, their families and their caregivers.  1.2 Background The complex nature of acute care in the context of a palliative care approach has been identified in literature. It has been argued that due to this complexity, a palliative care approach is often not considered or taken up in the acute care setting. One reason for this lack of take up might be that there is less awareness about the benefits attached with a palliative approach in acute care settings than in home and residential care settings (Initiative for A Palliative Approach NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                14in Nursing: Evidence & Leadership [iPanel], 2014). According to Thorne, Roberts, and Sawatzky (2016), there have been major gaps in understanding the life limiting nature of chronic diseases and their deep relationship with palliative care approach. These unattended gaps are the reason why acute care settings are not well positioned to support the quality of life of dying populations (Froggat & Payne, 2006; Seymour, Kumar, & Froggatt, 2011). This complexity also seems to form the background for underutilization of nurses’ potential in facilitating timely family meet-ings and their involvement in decision-making as an important component of a palliative ap-proach and palliative care.  Thus, there is a strong need to enhance nurses’ role in palliative approaches.  It is necessary to embed the palliative approach into acute care and to utilize it for the people with life limiting illnesses. As I have argued, nurses can play a significant role in the palliative approach to care by initiating communication that reflects patients' and families’ health care wishes, and by advocating for and supporting persons in their experience of living and dying (CNA, 2008; CNA, CHPCA, & CHPCANG, 2015). So, recognizing and enhancing nurses’ key role in the palliative approach puts them in a better position to advocate for timely family meetings for their patients to make people feel well-supported for their end of life decisions.  1.3 Problem statement Timely family meetings and better utilization of  the role of nurses in the facilitation of these meetings in the context of nurses' rapport with interdisciplinary team members, and with patients and families is well aligned with the principles of palliative approach of care (CNA, CHPCA, CHPCANG, 2015). While hospitals are responsible for most end-of-life care costs in Canada,  NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                15because hospitals are designed for treatment and recovery, the experience of dying there can of-ten mean inappropriate treatments, poorly managed symptoms, prolonged suffering and painful bereavement (CNA, 2008). As frontline leaders in acute care, nurses need to be more successful-ly involved in end of life discussions to prevent or improve these inappropriate and inadequate consequences for patients and their families. In this paper, I therefore intend to explore by means of an integrative literature review what constitutes improvement of the successful involvement of nurses in family discussions about end of life care in acute care settings underpinned by the pal-liative approach. Based on this review, I will provide recommendations to combat the barriers to successful involvement of nurses. 1.4 Research questions 1.  What are the barriers to successful involvement of nurses in family meetings to discuss end of life care in acute care settings in current evidence reported in the nursing literature?  2.   What are the recommendations to combat the barriers to successful involvement of nurses in acute care areas? 1.5 Conceptual framework  The recently developed notion of a palliative approach to care will serve as a framework and foundation for the argument and subsequent integrative literature review of this project. In this section, I will elaborate on the notion of palliative care as well as a palliative approach to care. In order to fully understand what entails a palliative approach, it is important to understand what palliative care is. Palliative care is defined as the care given to improve quality of life for NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                16people afflicted with chronic and life-limiting illnesses (CNA, CHPCA, & CHPCANG, 2015). The promotion of early identification and comprehensive assessment and treatment of pain, and early identification of challenges that come with chronic disease processes including physical, psychosocial and spiritual issues is the foremost goal of palliative care (WHO, 2015; CNA, CH-PCA, & CHPCANG, 2015). Palliative care  should start at the diagnosis of a chronic, life-limit-ing illness and continue through death, bereavement and care of the body (Carstaris, 2010; CNA, CHPCA, & CHPCANG, 2015). Based on patients’ needs, palliative care can be delivered at three levels: through a palliative approach, general palliative care and specialist palliative care (CNA,CHPCA, & CHPCANG, 2015). In what follows, I will explain each of these three levels: A palliative approach-The palliative approach makes use of five significant palliative care prin-ciples: dignity, hope, comfort, quality of life and relief of suffering (CNA, CHPCA, CHPCANG, 2015; Sawatzky et al., 2016). Most importantly, it applies to all stages of any chronic disease process, not just at the end of life. It reinforces personal autonomy, the right for persons to be actively involved in their own care and a greater sense of control for individuals and families (CNA, 2014; Sawatzky et al., 2016). What makes a palliative approach significant as an interac-tive approach is that it does not link the provision of care too closely with prognosis, rather, it focuses on dialogue with people about their needs and wishes (Stajduhar, 2011; CNA, CHPCA, CHPCANG, 2015). A successful role of nurses in EOL decisions is enacted within person-cen-tred care, which puts the patient’s values and beliefs at the forefront (CNA, CHPCA, CHP-CANG, 2015). As person-centred care is foundational to a palliative approach (CNA, CHPCA, CHPCANG, 2015), it can be stated that the routine patient care endeavours of bedside nurses should utilize a palliative approach. In this paper, the concept of a palliative approach will be uti-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                17lized to underpin the complexities of the barriers impeding the successful role of nurses in PC discussions. General palliative care-This is care for people with life limiting diseases provided by health care professionals and others, who have knowledge of palliative care (CNA, CHPCA, CHP-CANG, 2015). Specialist palliative care — This involves a specialist palliative care team or health profession-als to augment palliative care on two levels — patient and staff level. On a patient level, the team assesses and treats complex symptoms, and on a staff level, they provide information and advice to staff about complex issues, which might include ethical challenges, family issues and psycho-logical distress  (CNA, CHPCA, CHPCANG, 2015)  1.5.1 Palliative care as  holistic careThe World Health Organization (WHO) (2017) defines palliative care as a holistic form of care that focuses on reducing pain and other symptoms of life-limiting conditions, and im-proving quality of life. This form of care could be applied from the earlier stages of illness until the end of life. The goal of a holistic approach includes both  the patient with incurable illness, but also the needs of their families (Holm, Goliath, Sodlind, & Alvariza, 2017).  In other words, a palliative approach aligns well with holistic care by keeping patient and family the priority and illness secondary. 
1.5.2 The palliative approach as patient and person-centred care   Patient-centred care is defined as care that is respectful of and responsive to individual patient needs and values, and that is ensuring that a patient's values and needs guide all clinical decisions (Jacob, 2010; Newell, Entrep, & Jordan, 2015). In 2005, the WHO established a Pa-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                18tients for Patient Safety program to improve patient safety globally. According to this program, patient safety is improved if patients are placed at the centre of care and included as full partners in all aspects of their care. Consequently, contemporary global healthcare policy puts a very high value on patient engagement in all aspects of their health care as well as in systemic quality im-provement (Newell et al., 2015). At an individual level, patient-centred care is provided in a re-spectful manner, allows consistent, open and ongoing dialogue between the patients and health care providers and encourages participation of patients and families (Newell et al., 2015). Patient centred care has implications for organizations  providing end of life care (Ohlen et al., 2017).In fact, the essence of patient-centred care is well-aligned with person-centred care and the primary goals of a palliative approach to care (McHugh, Arnold, & Buschman, 2012), such as providing care aligned with patient and family needs and supporting them through difficult end-of-life decisions (Meier, 2011; Sopcheck, 2016). Nurses are well-positioned to provide per-son-centred care within a palliative approach as they often are in a good position to have or gain good insights into their patients’ lives from the perspective of social relationships, cultural beliefs and values that identify the meaning of good death to each individual. For this reason researchers and healthcare administrators have begun to understand nurses’ significant role in person-centred care (McHugh et al., 2012; Sopcheck, 2016). The literature on a palliative approach emphasizes the  high  need  of  therapeutic  relationships  between  the  patient  and  family,  and  health  care providers in order to enhance the quality of life through patient-centred care (Sawatzky et al., 2016; Sopcheck, 2016). In order to develop person-centred care planning for the human aspect of quality of life from the perspective of a palliative approach, the need for service delivery models that accom-modate the therapeutic engagement between nurses and patients is urgent. The need for more NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                19comprehensive information for patients and families should be at the core of these delivery mod-els. This information should include details of what their illness journey entails. The person-cen-tred plan of care should focus on the important values to an individual in order to guide a pa-tient’s support system alongside their illness journey (Thorne et al., 2016). Clear communication about the progressive nature of most chronic diseases despite self-management are foundational to enacting a palliative approach to care planning (Sawatzky et al., 2016; Seccareccia et al., 2015; Thorne et al., 2016). Such a plan will often involve acute hospitalizations, arrangements for management of symptoms and functional decline, and preparation for the eventual dying time, all of which will be more understandable when discussed as part of an expected trajectory with clear communication (Thorne et al., 2016). In brief, a palliative care approach is patient-centred care with its primary goal focused on patient and family needs to enhance their quality of life. Nurses are well-positioned to provide person-centred palliative approach to their patients because they typically spend more time with patients as compared to other health professionals, and clear communication between health care providers and the patient and family is of utmost importance. These insights are highly valued in growing bodies of health care literature.  1.6 Methods  An integrative literature review methodology will be utilized for this project. This methodology has many benefits including evaluating the strength of the scientific evidence, iden-tifying gaps in current research, identifying the need for future research and exploring which re-search methods have been used successfully (Russell, 2005). The simultaneous inclusion of ex-perimental and non-experimental research and the combination of data from theoretical and em-pirical literature enhances the understanding of a phenomenon of concern (Whittemore & Knafl, NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                202005), which, in this case, is the exploration of barriers in the way of successful involvement of nurses in the end of life decision making process. Further, the varied sampling frame of integra-tive reviews in conjunction with the multiplicity of possible purposes has the potential to result in a comprehensive understanding of complex concepts and health care issues of importance to nursing (Whittemore & Knafl, 2005). This is why this methodology is advocated as important to nursing science and nursing practice (Whittemore & Knafl, 2005).   As suggested by Whittemore and Knafl (2005), a five stage review process has been used as a guidance for the integrative review in order to increase the rigour of the review. These five stages include: Problem identification, Literature search, Data collection and evaluation, Data analysis and Presentation (Whittemore & Knaft, 2005). In this paper, the latter two steps are combined in the presentation of a description and analysis of findings from the selected literature in chapter 2.  For the first stage of problem identification, I have identified that the role of nurses in the end of life discussions is unclear. Thus, my research question has two parts: what are the barriers to successful involvement of nurses in end of life discussions and what are the recom-mendations made in existing studies to combat these barriers? The identified barriers and rec-ommendations will be examined within the context of the concept of a palliative approach. For the literature search, which is the second stage of an integrative literature review, a systematic search approach has been applied for all studies relevant to the topic of the role of nurses in end of life care discussions in the COPD population. The third stage involved the selection of the rel-evant studies with target population of COPD patients in critical care settings. The selection of studies included in the review and the analysis of the findings from these selected studies will be discussed in detail in chapter 2 and 3. A summary of the research approaches used in these stud-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                21ies will be described in chapter 2 (Table 2). The final stage will be further covered in Chapter-3 to include a discussion of the main findings presented in the selected studies  with regard to the barriers in the way of successful role of nurses in end of life discussions. Chapter 4 will include a summary, conclusions and recommendations drawn from the review with regard to improvement of the role of nurses in end of life discussions. 1.6.1 Problem identification and literature search  1.6.1a Selection criteria Key terms for the literature search included Palliative Care, End of life Care, Advanced Care Planning, Bereavement, Palliative Care Approach, Dignity and COPD Patients, and Com-munication, Involvement of Nurses and Team Meeting, Family and End of Life Care, and nurses’ role were used with combinations with mappings to subject headings with MeSH terms. I also hand searched the reference lists of eligible articles to identify further articles for screening. 1.6.1b Inclusion and exclusion criteria The inclusion criteria for selection of studies were:  - health care literature from the last 17 years (2000-2017); because the literature search revealed that recent studies tended to encompass the older scholarly studies. Therefore, a focus on literature from the last 17 years sufficiently captured the relevant studies.  - studies relevant to end stage COPD population with focus on critical care      settings  - articles selected from published journal articles  - experimental and non-experimental research  -literature written in English NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                22The exclusion criteria are as follows: - studies outside of health care disciplines 1.6.2  Data collection and selection of relevant studies   In the selection of articles included in the review were those relevant to end stage respiratory patients. Empirical studies conducted within the last seventeen years of nursing litera-ture are the main focus of this project, but the older foundational work relevant to the discourse of end of life care was also examined. A bibliographic search in various databases: CINAHL, PubMed, MEDLINE and Google Scholar abstracts was undertaken. In summary, the inclusion criteria encompassed literature published in journals, both experimental and non-experimental research, most of which is available in electronic format. Initially, approximately 80 studies were selected for review. The references were stored in author’s UBC library account to track back the titles of the studies.  However, after careful examination of abstracts of the selected studies,  10 studies met the inclusion criteria. These 10 studies are the focus of the integrative literature re-view and their citations are listed  in the following table 1.6.2. 

NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                23
Table 1.6.2 Articles selected for integrative literature review 
• Anderson, W. G., Boyle, D., Turner, K., Noort, J., Grywalski, M., Meyer, J.,…Pantilat, S. (2016). ICU bedside nurses’ involvement in palliative care communication: a multicenter survey. Journal of Pain and Symptom Man-agement, 51(3), 589-596. http://dx.doi.org/10.1016/j.jpainsymman.2015.11.003 • Reimer-Kirkham, S., Sawatzky, R., Roberts, D., Cochrane, M., & Staj-duhar, K. (2016). ‘Close to’ a palliative approach: nurses’ and care aides’ descriptions of caring for people with advancing chronic life-limiting con-ditions. Journal of Clinical Nursing, 25, 2189-2199. doi: 10.1111/jocn.13256 • Flannery, L., Ramjan, L. M., & Peters, K. (2015). End-of-life decisions in the Intensive Care Unit (ICU) – exploring the experiences of ICU nurses and doctors – a critical literature review. Australian Critical Care, 29, 97-103. http://dx.doi.org/10.1016/j.aucc2015.07.004 • Australian and New Zealand Intensive Care Society. (2014). ANZICS Statement on Care and Decision-Making at the End of Life for the Criti-cally Ill (Edition 1.0). Melbourne,.  • McMillen, R. E. (2008). End-of-life decisions: nurses perceptions, feelings and experiences. Intensive and Critical Care Nursing, 24(1), 251–259. doi: 10.1016/j.iccn.2007.11.002 • Newell, S., & Jordan, Z. (2015). The patient experience of patient-cen-tered communication with nurses in the hospital setting: a qualitative sys-tematic review protocol. JBI Database of Systematic Reviews and Imple-mentation Reports, 1391, 76-87. Doi: 10. 11124/jbisrir-2015-1072 • Oczkowski, S. J. W., Chung, H., Hanvey, L., Mbuagbaw, L., & You, J. J. (2016). Communication tools for end-of-life decision-making in the intensive care unit: a systematic review and meta-analysis. Critical Care. 20(97), 1-19. DOI: 10. 1186/s13054-016-1264-y • Wysham, N. G., Hua, M., Hough, C. L., Gundel, S., Doherty, S. L., Jones, D. M.,…Cox, C. E. (2017). Improving ICU-based palliative care delivery: a multicenter, multidisciplinary survey of critical care clinician attitudes and beliefs. Critical Care Medicine Journal, 45(4), e372-e378. • You, J. J., Downar, J., Fowler, R. A., Lamontagne, F., Ma, I. W. Y., Jayaraman, D.,…Heyland, D. K. (2015). Barriers to goals of care discussions with seriously ill hospitalized patients and their families a multicenter survey of clinicians. JAMA Internal Medicine. 175(4), 549-556. doi: 10.1001/jamainternmed.2014.7732NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                241.6.3 Organization of Study
 Following this introductory chapter, the next chapter highlights the analysis  of  findings from the integrative literature review. It focuses on the ten selected studies listed in Table 1.6.2. and provides a description of the main findings from these studies. The subsequent chapter three will  give a further  discussion of  the findings from the review within the context of the main themes emerged during the literature review process.  Key points and themes will be summarized and presented at the end of each chapter. In a final chapter four,  conclusions and recommenda-tions will be presented to conclude the paper. 


NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                25CHAPTER-2- Analysis of Findings from the Selected Studies 
 This chapter explores the ten studies selected for this review by first presenting an over-view of the studies in Table 2.1, and then, following the table, I will discuss each study in the or-der they appear in the Table,  analyzing the different aspects in answer of both research ques-tions, including barriers to successful involvement of nurses in PC discussions, and perspectives about nurses’ role in EOL discussions, patient-centred communication, shared decision-making processes, and recommendations to improve PC communication in acute care areas.  Table 2.1 Chronological overview of articles included within the integrative literature re-view by authors, year, study design and main themes Article Authors Year Study design ThemesEnd-of-life decisions: nurses perceptions, feelings and experi-encesMcMillen, R. E.2008 Qualitative research method  No. of partici-pants-8• Nurses’ contribution is vital to EOLC decisions • Nurses should be well supported in the role of EOLC decision-making processEfCCNa survey: Eu-ropean intensive care nurses’ attitudes and beliefs towards end-of-life careLatour, J. M., Fullbrook, P. & Albarran, J. W.2009 Survey method No. of partic-ipants-419• EOLC discussions occurred too late • Most ICU nurses are involved in EOLC discussionsANZICS Statement on Care and Decision-Making at the End of Life for the Critically Ill (Edition 1.0)Australian and NewZealand Intensive Care Society2014 Framework for best practice in respect of criti-cally ill pa-tients at the EOLInvolvement of critical care nurse is vital to the PC planning in terms of consultation by ICU doc-torNURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                26End-of-life decisions in the Intensive Care Unit (ICU) – exploring the experiences of ICU nurses and doctors – a critical literature reviewFlannery, L., Ramjan, L. M., & Peters, K.2015 Systematic Literature review• Overall accountability assigned to the doctor for EOL decision-making process • Role ambiguity for nurse’s role in EOL decision-making process (informal role). • Communication issues • Lack of standardized approach to EOL decision making processThe patient experience of patient-centred communication with nurses in the hospital setting: a qualitative systematic review protocol Newell, S., Entrep, G. C. I., & Jordan, Z.2015 Qualitative Systematic review• patient centred care • recommend to pro-mote a shift from communication with patients occurring only at times suited to the routine of the clinicians to the inte-gration of proactive patient engagement and interaction throughout the con-tinuum of a patients' hospital stay. NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                27ICU bedside nurses’ involvement in palliative care communication: a multicenter surveyAnderson, W. G., Boyle, D., Turner, K., Noort, J., Grywalski, M., Meyer, J.,…Pantilat, S. 2016 Multicenter Survey-design No. of participants= 598• engagement of nurses in palliative care is important to quality of patient care. • Frequently reported barriers to nurses’ involvement in PC communication was need for more training, physicians not asking their perspectives, and emotional stress of discussionscommunication tools for end-of-life decision-making in ambulatory care settings: a systematic review and meta-analysisOczkowski, S. J., Chung, H., Hanvey, L., Mbuagbaw, L., & You, J. J.2016 • A Systematic Review and Meta-Analysis of RCTs and non-RCTsThe use of structured communication tools may increase the frequency of discussions about EOL care in outpatients settings.Close to’ a palliative approach: nurses’ and care aides’ descriptions of caring for people with advancing chronic life-limiting conditionsReimer-Kirkham, S., Sawatzky, R., Roberts, D., Cochrane, M., & Stajduhar, K.2016 • Qualitative study with interpretive description • 25 nurses participated • Focus groups and interviews conducted in BC, Canadabenefits of palliative approach have been recommended for life-limiting conditions by nursesNURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                28McMillan (2008) indicates the crucial role played by nurses in end of life decisions. Four major themes have been revealed from the analysis of the nurse’s role in EOL decision-making process: the experience of the nurse, planting the seed, being a patient advocate and supporting the family. In this study, various roles of nurses have been highlighted. One of them is the high value placed on nurses’ input into the decision-making process within interdisciplinary context. The barrier faced by nurses in this role is their potentially short length of work experience in the ICU. For example, senior nurses’ input has been demonstrated as highly valued by the ICU doc-tors as compared to junior nurses, whereas junior nurses are more often not taken into considera-tion. Next, McMillan (2016) clarifies that the role of planting the seed refers to the process of the Barriers to goals of care discussions with seriously ill hospitalized patients and their families a multicenter survey of cliniciansYou, J. J., Downar, J., Fowler, R. A., Lamontagne, F., Ma, I. W. Y., Jayaraman, D.,… Hey-land, D. 2017 Multicenter survey of nurses and physicians from 13 teaching hospitals from 5 Canadian provinces with 512 nurses out of 1256 Clinicians.• Patient and Family-member related factors are the most important barriers to goals of care discussions as perceived by Clinicians. • Recommended interventions include better communication skills training for all clinicians including nurses.Improving ICU-based palliative care delivery: a multicenter, multidisciplinary survey of critical care clinician attitudes and beliefsWysham, N. G., Hua, M., Hough, C. L., Gundel, S., Doherty, S. L., Jones, D. M., …Cox, C. E. 2017 • Mixed-methods • 303 participants-nurses and intensivistsDisagreement about the role of ICU nurses in PC delivery.NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                29nurse starting to signal the medical staff about the need to discuss end of life decisions. Further, for the role of advocate, nurses reveal that they are not adequately prepared for this role because of the complexity of the ethical principles involved in decisions that should be made on behalf of sedated patients. Finally, supporting family members through patient’s complex disease process has been viewed as a significant aspect of nurse’s role in EOL decision-making process.  Latour et al. (2016) support the fact that involvement of ICU nurses in EOL decision-making process is inconsistent. The authors used a survey method to survey ICU nurses in sever-al European countries and developed a self-administered questionnaire about nurses’ involve-ment with EOL practices. The response rate for completed questionnaires was 39%. The data in-dicates that most ICU nurses in this study were involved in EOL care with 91.8% of the partici-pants, while only 73.4% indicated active involvement in decision-making process. The 91% of participants strongly agree or agree that timing of EOL discussion is often too late. It has been indicated in the study’s conclusion that differences in nurses’ attitudes occur and are affected by factors such as ethical beliefs and religious views.  According to the Australian and Newzealand Intensive Care Society, ANZICS (2014), a statement has been intended to provide a framework for best practice in respect of critically ill patients at the end of life in Australia and New Zealand and to provide strong support to inten-sive care staff involved in the care of these patients and their families. It has been highlighted in the Foreward section of the statement that this statement builds on the 2003 ANZICS statement, and was meant to provide support for ICU staff under conditions, where the burden of intensive treatments may outweigh the potential benefits for patients. However, the new statement (2014) encompasses the details of clinical context, ethical principles and the legal framework in Aus-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                30tralia and New Zealand for end of life care in critical care settings. This framework articulates the shared responsibility of ICU doctors and other interdisciplinary team members including ICU nurses to reach a mutually agreed upon decision by all parties that reflects the best understanding of the patient’s goals of care in context of prognosis, and of the patient’s wishes. Also, it has been recommended for ICU nurses to take a leadership role in end of life discussions in the medical units, particularly when ICU doctors and palliative care teams are not available during out of hours.  Flannery, Ramjn and Peters (2016) report in their critical literature review the differences in the EOL decision making process and collaboration between doctors and nurses. The authors reveal in the study that the careful selection of 12 papers for the study was undertaken by using the Critical Appraisal Skills Programme (CASP) tool. EOL decisions were identified as the core theme, with critical examination of the three topic questions: who is involved? What are the chal-lenges? And are decisions a source of moral distress? It has been emphasized that collaboration was dependent on physician preference or seniority of nurses with most accountability assigned to the physician. Role ambiguity, communication issues and the initiation of  EOL discussions have been illuminated by authors as major challenges in the way of effective PC decision-mak-ing process. Nurses are not always integral to the EOL decision-making process even though they are considered in a unique position to guide families in the process, when the patient is con-sidered incompetent to participate in the decision-making process. So, this inconsistent inclusion of nurses in the decision-making process leads to role ambiguity for nurses. A next theme in this review is that, communication issues include the underrepresentation of nurses in EOL decision-making process. For initiation of EOL discussions, it has been revealed that in various studies it NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                31has been recognized that nurses alerted attending doctors for the need of end of life discussions. Despite this, nurses were not formally involved in the EOL decision-making process and their inclusion was decided by the attending doctor. Consequently, nurses have to suffer emotional challenges due to the above discussed barriers in the way of their formal role in EOL discussions. In the end, need for a more comprehensive standardized approach to support the ICU team in EOL decisions has been recommended as best practice in the study.  Newell et al. (2015) support the idea of patient-centred care in clinical practice in medical-surgical wards. The aim of this qualitative systematic review is to synthesize the results of studies exploring patient experiences, beliefs, opinions and desires of engaging, interacting and communicating with nurses at the bedside setting in medical-surgical wards during a hospital stay. The authors are hopeful about the identification of major themes and concepts regarding the patient experience of patient-centred communication. They advocate for the promotion of a shift in attitude of clinicians in the context of patient-centred approach. The authors suggest that communication with patients should occur throughout the continuum of a patient’s hospital stay, and not only at the time best suited with health care provider’s convenience. Although the study indicates gaps in research with the absence of systematic reviews on patient experiences of en-gaging and interacting with bedside nurses in medical and surgical wards, it does not provide specific recommendations regarding communication on a day to day basis of nurses with pa-tients. Anderson et al. (2016) undertook the exploration of the perspectives of ICU bedside nurses on their involvement in PC communication. They utilized the survey design and 598  participants were surveyed. Of these, 88% indicated the direct relationship of nurses’ engagement in goals of NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                32care and palliative care to the quality of patient care. 45% of participants reported rarely or never participating in family meetings. Nurses indicated three main barriers to their participation in PC communication: need for more training (66%), physicians not asking their perspective (60%), and emotional toll of discussions (43%). The authors recommend the need for interventions of training, opportunities and support for nurses to actively participate in PC discussions.  Oczkowski et al. (2016) report in their systematic literature review  that the use of structured communication tools may increase the frequency of discussions about, and completion of advance directives, and agreement between the care expected  by patients and the care deliv-ered to patients. However, no specific information about the structured communication tools has been reported in the study. The use of different kinds of interventions to assist in EOL decision-making has been reported in this study. Examples included traditional decision aids, structured meetings, and educational interventions, which allowed the authors to review a variety of tools in the published peer-reviewed literature. Further, the authors illuminate that the above mentioned method of research ensured to include all the peer-reviewed journals, which otherwise might not have been termed as a decision-aid. Overall, the authors suggest that the use of structured com-munication tools to end-of-life decision-making should be considered, and the selection and im-plementation of such tools should be modified  to address the needs of the patients in a particular context.  Reimer-Kirkham et al. (2016) examine nurses’ and nursing assistants’ perspectives of a pal-liative approach in a variety of nursing care settings that are not specialized for PC. They have utilized a qualitative design for this study. It has been recommended that  integration of palliative approach can be enhanced by the reorientation to the care of patients with chronic illnesses. Fur-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                33ther, nurses’ capacity building factors, such as person-centred communication, and the role clari-ty about nurses’ scope of practice and role in relation to a palliative approach have been de-scribed as the key indicators of reorientation to care. The nurses’ role has been highlighted as “pivotal role” in the integration of a palliative approach. Provided nurses’ lack of clarity about roles, practice structures, such as residential care settings and acute care settings embedded in their contexts of care could give clear direction to have conversations about goals of care by pro-viding more education opportunities for nurses. In addition, the study indicates that although some studies  have put a high value to the effective interprofessional team as the foundation to a palliative approach, one study by Hartrick, Stajduhar, Causton, Bidgood, & Cox (2012) supports the need for more research to understand the reciprocal relationship between autonomous profes-sionals practices and interdisciplinary team collaboration in a palliative approach. It is to be not-ed here that the study by Reimer-Kirkham et al. (2016) does not shed light on the examination of interplay between autonomous professional practices and interdisciplinary team collaboration, so I had looked at the cited Hartrick et al.’s (2012) study for further clarification. Hartrick et al. (2012) clarify that the differences within interprofessional teams need to be questioned to en-hance end of life care. Questions of support between the processes of autonomous practice and team collaboration, and of converting divisions between the professions to the sites of inter-pro-fessional collaboration should be considered by inter-professional teams.   You et al. (2015) claim in their study that hospital-based clinicians perceive family member-related and patient-related factors as the most important barriers to goals of care discus-sions. These factors include family members’ or patients’ difficulty accepting a poor prognosis, family members’ or patients’ difficulty understanding the limitations and complications of life-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                34sustaining treatments, lack of agreement among family members about goals of care, and pa-tients’ lack of capacity to make decisions about goals of care. The authors have utilized a survey design and participants included 512 nurses, 484 internal medicine residents and 260 staff physi-cians from five Canadian provinces’ participating hospitals. One purpose of this study was to in-vestigate the barriers in communication and decision making about the goals of care with very ill patients and their families. The second purpose was to determine participants’ own desire and the acceptability for other clinicians to engage in this process.  The authors emphasize the need for shared decision-making about goals of care in  order to improve quality of patient care. They suggest that other team members, including nurses,  act as decision coaches and initiate goals of care discussion.  Interventions, such as more communication skills training, conversation guides and decision aids to support discussion planning  for clinicians have been recommended to im-prove goals of care discussions. Wysham et al. (2016) clarify in their mixed-methods study the disagreement about the role of ICU nurses in PC delivery. 150 bedside nurses participated in this study. They reported a de-sire among nurses to be more active participants in PC delivery and to reduce ICU attending variability in PC consultation. Also, they shed light on the past research, which demonstrates that physicians perceive nurses to be more involved in EOL decision making than is actually the case. Although nurses spend more time with patients and families than physicians and this role allows nurses a greater opportunity to assess patients’ PC needs, they do not consistently feel empow-ered to address these needs within the interdisciplinary context of PC. Further,  the authors found out that only 48% of physicians, as compared to 73% of nurses voted in the support of the sys-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                35tem in which both could initiate PC referrals. This issue of care implications of such tension is a reason why nursing staff perceptions have been suggested to be a quality indicator in ICU.   To sum up, the findings from the above ten studies indicate that none of them provides the clear definition of successful involvement of nurses in PC decision-making process. In addi-tion to  this observation, the studies also indicate that nurses play different roles in the PC deci-sion-making process, which include signalling the interdisciplinary team for a team meeting, supporting family during PC decision-making process and acting as an advocate for the patient during the PC decision-making process, but still they are inconsistently involved in the PC deci-sion-making process. Nurses’ inconsistent involvement indicates role ambiguity for their suc-cessful involvement in the PC decision-making process. In the next chapter I will explore the health care professionals related, and patient related barriers intruding the successful involve-ment of nurses in PC decision-making process. The recommendations suggested by the integra-tive literature review to improve nurses’ successful involvement will also be presented in the fol-lowing chapter.NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                36 CHAPTER-3: Discussion of the Findings  In order to discuss the barriers intruding the successful involvement of nurses in PC decision-making process, it is important to clarify what  is meant by the successful involvement of bedside nurses in PC decision-making process. It is clear from this integrative literature re-view, however, that the selected studies and reports do not provide one clearly defined statement about what constitutes the successful involvement of nurses in PC decision-making process. However, different roles of bedside nurses in EOL decision-making process have been enunciat-ed in the  literature reviewed.  Two major themes have recurred throughout the reviewed litera-ture: 1) several roles of bedside nurses in PC decision-making process were highlighted and 2)role ambiguity of bedside nurses in PC decision-making was consistently mentioned. These major themes will be addressed in this chapter. Subsequently,  two additional themes: 3) the pa-tient and family-member related barriers, and 4) health care professional  related barriers will be examined as they reflected other important influences on the successful involvement of nurses in PC decision-making process in acute care settings. Following the discussion of these four themes, which will be addressed in the next four sections, a fifth and final section will conclude this chapter, in which recommendations from the selected studies about improvement of nurses' involvement will be synthesized. 3.1: Several Roles of Bedside Nurses in PC Decision-making Process  In the reviewed literature, nurses’ involvement in the PC decision-making process has been highlighted as pivotal to the decision-making process (Anderson et al.,2016; Flannery et al., 2016; McMillen, 2008; Reimer-Kirkham et al., 2015). Nurses have several formal and informal NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                37roles in EOL decision-making process (McMillen, 2008). They include giving signals to the in-terdisciplinary team that it is an appropriate time to think about withdrawing intensive treatments and providing comfort care to a patient; supporting the family during the EOL decision-making process, and acting as a patient advocate to protect the patient’s safety and legal position in the PC decision-making process (McMillen, 2008). Although several studies indicate that the attend-ing doctor, who is in charge of an acute care area for that day, holds overall responsibility for ini-tiating the EOL decision-making process (Flannery et al., 2016; Latour et al., 2016), most studies support a shared decision-making process (ANZICS, 2014; Flannery et al.,  2016; Latour et al., 2016; You et al., 2015), which involves nurses, patients and their family members. Thus, it is ex-trapolated from the above discussion that nurses play a variety of roles in the PC decision-mak-ing process, while the attending physician mostly leads the EOL decision-making discussions. Although bedside nurses play above mentioned roles in the EOL decision-making process, the reviewed literature indicates the lack of clarity of bedside nurses’ role in the PC Decision-making process (Flannery et al., 2016). The following section will examine the factors responsible for the role ambiguity of nurses in PC decision-making process. 3.2: Role Ambiguity of Bedside Nurses in the PC Decision-making Process  Role ambiguity of nurses contributes to the lack of successful involvement of nurses in PC decision-making process as the PC decisions are often made unilaterally by the attending physician (Flannery et al., 2016). The major factor contributing to role ambiguity of bedside nurses is their inconsistent involvement in the PC decision-making process (Anderson, 2016; Flannery et al., 2016; Latour et al., 2016; Wysham et al., 2016). There are several reasons  high-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                38lighted in the reviewed literature why bedside nurses can not consistently involve in PC decision-making processes. For the purpose of this paper, only two will be discussed because they consis-tently recurred in the reviewed literature. One of them is bedside nurses’ lack of seniority (Flan-nery et al., 2016; Latour et al., 2016; McMillen, 2008). The second reason responsible for bed-side nurses’ inconsistent involvement in PC decision-making process is the attending doctor’s inconsistent preference to involve the bedside nurse in the PC decision-making process (Flannery et al., 2016; McMillen, 2008; Wysham et al., 2016).  Terms such as  ‘seniority’ and ‘level of work experience’ (Flannery et al., 2016) were used in the reviewed literature to describe how work experience accounts (McMillen, 2008) for nurs-es’ involvement in the PC decision-making process. It is evidenced in the reviewed literature that both factors (bedside nurse’s work experience, and the attending doctor’s preference to involve the bedside nurse in PC decision-making process) are two reciprocal factors responsible for the successful involvement of beside nurses in PC decision-making process (Flannery et al., 2016; McMillen, 2008). As the attending doctor leads the decision-making process in most PC cases (Flannery et al., 2016; Latour et al., 2016), it often is at the doctor’s discretion to decide who is involved in the PC decision-making process. The attending doctors value the input from nurses with extensive critical care experience and, hence end of life experience to effectively manage PC decision-making process (Flannery et al., 2016; Latour et al., 2016; McMillen, 2008). So, it is clear from above discussion that role ambiguity alluded to bedside nurses’  inconsistent involve-ment in PC decision-making process may contribute to their lack of successful involvement in PC decision-making process. While senior nurses were more often consulted, in reality teams NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                39consist of  both senior as well as  junior nurses. It seems important to better equip junior nurses for participation in inter-professional discussions. 3.3: Patient and Family-member Related Barriers to PC Decision-making Process The literature reviewed indicates that patients and families place high value on bedside nurses’ involvement in PC decision-making process (Anderson et al., 2016). While critically ill patients see communication and decision making about goals of care as high priorities for end of life care (Oczkowski et al., 2016; You et al., 2015), in one study only a few patients and family members (22% and 24% respectively) were asked by their health care providers (including nurs-es), about their wishes for EOL care (You et al., 2015). In the same  study clinicians including bedside nurses perceived patient and family member related factors as the biggest barriers in en-gaging in decision-making process (You et al., 2015). These factors include families’ and pa-tients’ difficulty accepting the poor prognosis, and understanding the futile nature of intensive treatments (You et al., 2015).  3.4: Health Care Professionals Related Barriers to PC Decision-making Process  Despite bedside nurses desire to be active participants in PC decision-making processes (Wysham et al., 2016), there are three health care professional related barriers consistently re-ported in the reviewed literature, which impact nurses’ successful involvement in the PC deci-sion-making process. These three barriers are as follows: 1. the need for more training, 2. attend-ing doctors not asking for bedside nurses’ perspectives; and 3.the pressure of moral distress of PC decision-making process (Anderson et al., 2015; McMillan, 2008). Moral distress is concep-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                40tualized as the inability of successfully negotiating the intersecting professional and corporate values (Musto, Rodney, & Vanderheide, 2015). In a study by Anderson et al. (2015), 66% of 598 nurses agreed or strongly agreed that the need for more training was a barrier to their successful involvement in PC decision-making process; 60% nurses reported of not being asked about their opinions by the attending doctor and 42% reported of the emotional distress attached to PC deci-sion-making process. Similarly, support for more training for junior nurses who lack end of life experience has been viewed as an area to be improved upon by several nurses in a study by McMillan (2008). The need for more training for junior nurses, nurses not being asked about their opinions by the attending doctors, and the emotional toll of PC discussions occur  because of nurses’  lack of experience in end of life care, which impacts their successful involvement in PC decision-making process (McMillan, 2008). Thus, it is evident that nurses perceive the health professionals (doctors and nurses) related barriers discussed above as major impediments  to their successful involvement in PC decision-making process. 3.5: Summary of Recommendations from the Integrative Literature Review   The need for more training for bedside nurses especially for junior nurses, to effectively manage the PC discussions, and the use of modified structured tools and decision aides has con-sistently emerged in the literature reviewed in this paper. Reimer-Kirkham et al. (2016) suggest that nurses be provided with  both disciplinary and interdisciplinary education through multiple teaching and learning approaches. They reveal the need for education on topics such as the  iden-tification of patients, who could benefit from a palliative approach;  goals of care; ethical-legal knowledge regarding withdrawal of  invasive treatments; and symptom management for life-lim-iting conditions. McMillan (2008) and Flannery et al. (2016) note that bedside nurses are sig-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                41nalling the team for organizing an early family meeting to discuss PC goals of care with the pa-tient and family. However, this important aspect of bedside nurses’ involvement in the PC deci-sion-making process is neglected by the attending doctors, who frequently do not include the nurses in family meetings (Flannery et al., 2016).    Surprisingly,  attending doctors perceive bedside nurses to be more involved in the family meetings than actually is the case as indicated by Wysham et al. (2016) in their study. Anderson et al. (2016) advocate for the need for education of nurses and physicians alike to increase their awareness of scope of nursing practice in PC communication. It is hoped by me from this inte-grative literature review that education for nurses focused on discussions of the prognosis as well as goals of care and palliative care with patients, their families  and physicians, can increase nurses’ confidence to engage in PC decision-making process. Indeed, Oczkowski et al. (2016) and You et al. (2016) recommend the implementation of decision aides and modified structured communication tools to goals of care discussions to improve PC decision-making process. In ad-dition, shared decision-making processes for PC decision-making process has been highly rec-ommended  in the literature reviewed for this paper (ANZICS, 2016; Reimer-Kirkham et al., 2016; You  et al., 2015). The next chapter will conclude this paper by undertaking a distinctive approach. The  synthesis  of the recommendations presented in this section (based on 10 re-viewed studies), and the recommendations suggested in other reviewed grey literature will be highlighted to provide a short summary of recommendations to improve PC decision-making process. NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                42CHAPTER-4 Conclusion and Recommendations  The intended purpose of this paper was to investigate the barriers and recommendations for successful involvement of nurses in family meetings and PC decision-making processes in acute care settings in current evidence reported in the nursing literature. This paper met the pur-pose of examination of barriers and recommendations in the context of nurses’ role ambiguity in PC decision-making process and answered both of following research questions: 1.  What are the barriers to successful involvement of nurses in family meetings to discuss end of life care in acute care settings in current evidence reported in the nursing literature?  2.   What are the recommendations to combat the barriers to successful involvement of nurses in acute care areas? 4.1: Short Summary This paper highlights the different roles of bedside nurses, such as, alerting or signalling the team of the need or family wish to withdraw intense treatments and update the family regard-ing PC goals of care and providing support and advocating for patient and family during PC de-cision making process as examined in the  integrative literature review. Despite varied roles of bedside nurses in PC decision-making process, there is an overall lack of clarity in their role (role ambiguity) in PC decision-making processes. The major factor underpinning the role ambi-guity is inconsistent involvement of bedside nurses in PC decision-making process. Further, nurses’ work experience or seniority level, and the attending doctor’s inconsistent preference for bedside nurses’ involvement in PC decision-making process, have been consistently mentioned in the reviewed literature as reasons contributing to nurses’ inconsistent involvement in PC deci-NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                43sion-making process. As inconsistent involvement of bedside nurses is directly related to their lack of successful involvement in PC decision-making, the paper provided a discussion of patient and family, as well as health care professionals related barriers. This discussion  helped to better understand the gap in successful involvement of bedside nurses in PC decision-making process. The following section encompasses and synthesizes the distinct key recommendations from the above discussion and from additionally reviewed grey literature (Storch, Starzomski, & Rodney, 2013) to break these barriers in the way of successful involvement of bedside nurses in PC deci-sion-making process as suggested in the reviewed literature. 4.2: Key Recommendations  As highlighted in Chapter-3, there were three health care professionals’ related barriers identified, which impact the successful involvement of bedside nurses in PC decision-making process. These barriers include nurses’ need for more training, doctor’s inconsistent preference for nurses’ input and moral distress involved in the PC decision-making process. The recommen-dation for more training for bedside nurses (especially junior nurses) to effectively manage the PC discussions has consistently emerged in the reviewed ten studies reviewed for the purpose of this paper. This finding aligns with the recommendation provided in the joint position statement (CNA, CHPCA, CHPCANG, 2015), which  also highlights the need for the education of all nurses involved in PC decision making process. Novice to expert nurses should be provided edu-cation by nurse educators about PC by explaining and modelling the relevant competencies in order to provide high quality PC (CNA, CHPCA, CHPCANG, 2015; Storch, Starzomski, & Rodney, 2013). As nurses, interdisciplinary team members, health-care employers and govern-ments all are accountable for high quality PC (CNA, CHPCA, CHPCANG, 2015), it is their NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                44shared responsibility to involve key stakeholders-especially  bedside nurses, in the PC decision-making process to  provide high quality PC.   In order to provide high quality PC, all team members, including nurses, need to further explore the gaps in the successful involvement of bedside nurses in the PC decision-making process.  Reimer-Kirkham et al. (2016) suggest to providing both disciplinary and in-terdisciplinary education through multiple teaching and learning approaches. They reveal the need for education on topics, such as identification of patients, who could benefit from a pallia-tive approach, goals of care, ethical-legal knowledge regarding withdrawing invasive treatments and symptom management for life-limiting conditions. Moreover, Anderson et al. (2016) advo-cate for the need for education of nurses and physicians alike to increase their awareness of scope of nursing practice in PC communication. Nurses’ education focused on discussions of the prognosis, goals of care and palliative care with patients and physicians, would increase nurses’ confidence to engage in PC decision-making process. Further, such education will mitigate the moral distress faced by nurses  in the context of disempowerment resulting from their inconsis-tent involvement in PC decision-making process.   In terms of moral distress, Musto et al., (2015) recommend the implementation of  several strategies, such as built in interdisciplinary rounds to learn “from, with and about” each other;  transparent feedback between all levels of the structural domains of health care system; ethics support for complex PC decision-making processes; and  supportive work environments that encourage inter professional debriefings after morally distressing incidents (p. 98). These strategies address the challenge of successful involvement of bedside nurses in PC decision-mak-ing process from an interdisciplinary approach. This approach seems promising for a reduction NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                45of the  gaps between senior and junior nurses in the context of their successful involvement in PC decision-making process.  As the integrative literature review conducted in this paper indicates, in addition to health care professionals’ related barriers, patient and family related barriers also debilitate PC decision-making process. Thus, You et al. (2017) advocate for communication skills training for in-terdisciplinary team members in addition to the interventions including decision aids in PC deci-sion-making processes. However, decision aids should not be replacing the standardization of meaningful interactions on all levels of patient care-including communication between team members, and between patient and families and health care professionals. In fact, a standardized approach to shared decision-making process to shape PC decision-making process has been high-ly valued in the reviewed literature. Routine or consistently built in rounds in the critical care settings is one example of this standardized approach, which has a potential to consistent inclu-sion of  bedside nurses in PC decision-making process (Musto, et al., 2015). As a critical care nurse, I can see the significant  value of these daily rounds for  team communication, and hence for quality patient care because the opinions of team members are highly acknowledged by the attending physician. The bedside nurse as a key stakeholder during these rounds can impact the PC decision-making process with their valuable input about all the domains of  patient assess-ment. However, there is a  need is to improve the quality of these rounds with supportive training opportunities to improve the successful involvement of bedside nurses to enhance the  quality of PC decision-making process. Nurses need to take a leadership role to identify and to address the barriers to their successful involvement in these team rounds with the above suggested measures and approaches. NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                46Overall, given the diversity of barriers to PC decision-making process (You et al., 2017), emphasis should be given to the need to understand the contextual realities of nursing practice in the light of barriers and facilitators of the knowledge translation in order to achieve the quality end of life care for all (Stajduhar, 2011). Nurses need to play leadership roles (ANZICS, 2014) at all levels of care in order to facilitate their successful role in PC decision-making processes so that their voice can be heard within collaborative models of  care in the provision of quality end of life care (Storch, Starzomski, & Rodney, 2013). It is evident from the literature reviewed in this paper that communication skills training and education of PC care will enhance the confi-dence of bedside nurses to engage in PC decision-making process, and hence will shape their leadership skills in relation to the promotion of patient and family support. In conclusion, bed-side nurses are  key stakeholders in the end-of-life care of patients with COPD and other chronic diseases, and  have the  potential to play a successful role in PC decision-making process within shared decision-making models of care if they are well-supported by the health organizations for their needs of education. NURSES’ ROLE IN A DIGNIFIED DEATH                                                                              !                                                                                47
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