Background
In June 2016, medical assistance in dying (MAiD) was made legal in Canada. Since then, more than 2000 Canadians have received assistance in dying (Government of Canada, 2016). In Canada, MAiD can be requested by persons over the age of 18; however, assistance in dying is most prevalent for older adults (Government of Canada, 2016). In fact, the average age of Canadians receiving assistance in dying is approximately 73 years (Government of Canada, 2016).
In Canada, MAiD can be administered by a physician or nurse practitioner, or through the prescription of a self-administered substance (Ontario Ministry of Health and Long Term Care, 2017). Although the responsibility for the administration of MAiD is limited to physicians and nurse practitioners, assistance in dying may have implications for a variety of other health care professionals including pharmacists, nurses, and social workers. Each Canadian province has developed a different process for coordinating referrals, care, and access for patients requesting assistance in dying. Ontario, for example, has developed a provincial care coordination service to connect those requesting MAiD to physicians and nurse practitioners willing to perform the procedure (Ontario Ministry of Health and Long Term Care, 2017). A more diverse example is Manitoba’s interdisciplinary MAiD team, involving physicians, nurses, social workers, pharmacists, and speech language pathologists (Winnipeg Regional Health Authority, 2016).
To date, Canadian research has largely focused on the understanding of end-of-life legislation, cost analysis, and program implementation (Li et al., Reference Li, Watt, Escaf, Gardam, Heesters and O’Leary2017; Marcoux, Boivin, Arsenault, Toupin, & Youssef, Reference Marcoux, Boivin, Arsenault, Toupin and Youssef2015; Trachtenberg & Manns, Reference Trachtenberg and Manns2017). Internationally, a majority of the literature on assisted dying is focused on the physician; however, some research has also examined the roles of nurses and psychiatrists (Block & Billings, Reference Block and Billings1995; Edwards, Reference Edwards2016; Fujioka, Mirza, McDonald, & Klinger, Reference Fujioka, Mirza, McDonald and Klinger2018; Groenewoud et al., Reference Groenewoud, Van Der Maas, Van Der Wal, Hengeveld, Tholen and Schudel1997; Schwarz, Reference Schwarz1999). Much of this literature, however, is focused on opinions related to the ethics of assisted dying, and whether or not the practice is justifiable (Braverman, Marcus, Wakim, Mercurio, & Kopf, Reference Braverman, Marcus, Wakim, Mercurio and Kopf2017; Glebock Gawor, & Ostrowski, Reference Glebock, Gawor and Ostrowski2013). Less explored is the experience of health care professionals working with patients, caregivers, and other providers through the process of MAiD. A scoping review by Fujioka et al. (Reference Fujioka, Mirza, McDonald and Klinger2018) recently investigated the roles of providers involved in MAiD, and the challenges faced by providers involved in the provision of MAiD. This review ultimately concluded that, although a variety of providers are involved in assisted dying, most published literature examines the roles and experiences of physicians and nurses (Fujioka et al., Reference Fujioka, Mirza, McDonald and Klinger2018). Considering the variety of providers involved in Canadian contexts, it is important to understand the perspectives and experiences of all parties involved in the MAiD process. This scoping review will build on the findings of Fujioka et al. (Reference Fujioka, Mirza, McDonald and Klinger2018) by examining and summarizing the existing qualitative literature surrounding the perspectives and experiences of health care providers involved in the care of persons receiving MAiD.
Methods
This scoping review followed the five stages proposed by Arksey and O’Malley (Reference Arksey and O’Malley2005). The scoping review methodology was selected for this study to allow for a broad exploration of the available literature, and analysis and synthesis of the results of the identified studies. After developing the research question, a search of electronic databases (PubMed, Cumulative Index to Nursing and Allied Health Literature [CINAHL], and PsycINFO) was conducted using search terms related to “assisted dying”, “health care professional”, and “experiences” which is outlined in Table 1.
Table 1: Examples of search terms
The search results were imported into RefWorks, and sorted according to the inclusion and exclusion criteria. Duplicates were removed, followed by a title and abstract screening process. A full-text screening process was completed as a last step for inclusion. Articles that were in English, peer reviewed, and published in an academic journal between the 2000 and 2018 were included. In the abstract and full text extraction, articles that involved qualitative methods, and focused on the opinions, experiences, and/or perspectives of professionals involved in the process of MAiD were included. Articles that focused on persons who requested assistance in dying in a country where the procedure was not legal were included if they focused on health care provider perspectives on caring for these patients and complications related to their request for assistance in dying. Articles that focused on opinions about what constitutes assisted dying, the justification of assisted dying, the legalization of assisted dying, reasons for requesting assisted dying, inclusion of persons with mental illness or dementia, or the interplay between religion and assisted dying were excluded. Additionally, articles that did not use qualitative methods or that focused only on the perspectives of patients and caregivers were also excluded.
All extracted articles were read in their entirety, and their results and findings were entered into an extraction table. The results in the table were initially analyzed using line-by-line emergent coding techniques (Braun & Clarke, Reference Braun and Clarke2006; Lofland, Snow, Anderson, & Lofland, Reference Lofland, Snow, Anderson and Lofland2006). This initial coding led to the development of a series of nodes focused on health care provider experiences during the assistance in dying process. The nodes were then sorted through a process of thematic analysis (Braun & Clarke, Reference Braun and Clarke2006) to develop a series of key themes existing across all extracted literature. These key themes were named, defined, and then reviewed to ensure that they accurately represented the original extracted results (Braun & Clarke, Reference Braun and Clarke2006).
Results
Overall, 2089 articles were retrieved. As demonstrated in Figure 1, a total of 21 articles met the inclusion criteria after full-text screening.
Figure 1: PRISMA flow diagram of study selection
The studies originated from the United States (4), Belgium (7), The Netherlands (7), Australia (1), Germany (1), and Israel (1). A total of 18 of the studies reported using in-depth or semi-structured interviews; the other 3 studies opted for focus group interviews (2) or open-ended survey responses (1). Six studies reported using a grounded theory methodological approach. Interview discussions related to perceptions, experiences, and processes of euthanasia and assisted dying from the view of physicians (12), nurses (8), social workers (2), and/or psycho-spiritual workers (1). These results are summarized in Table 2.
Table 2: Study characteristics
The four overarching themes that emerged across all articles were: complex process, importance of relationships and communication, interprofessional roles and dynamics, and coping.
Complex Process
The health care professionals involved in some of the studies referred to assistance in dying and euthanasia as a process, rather than an event (Borgsteede et al., Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Denier, Dierckx de Casterlé, De Bal, & Gastmans, Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2010a). In one study, nurses explained that caring for a person receiving assistance in dying is a complex, dynamic process that spans from the initial request to the after-care stages (Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2010a). In other studies, physicians explained the importance of timing, follow-up discussions, and clarity across the entire process, commenting that these factors contribute to their decision, and worked to ensure that patients are certain in their choice (Borgsteede et al., Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Snijdewind, van Tol, Onwuteaka-Philipsen, & Willems, Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014). Across multiple studies, the providers expressed the value of viewing assisted dying as a process, indicating that their confidence in the decision stemmed from the patients’ consistency in expressing their desire across numerous consultations (De Bal, Dierckx de Casterlé, De Beer, & Gastmans, Reference De Bal, Dierckx de Casterlé, De Beer and Gastmans2006; Dees et al., Reference Dees, Vernooij-Dassen, Dekkers, Elwyn, Vissers and van Weel2012; Denier, Dierckx de Casterlé, De Bal, & Gastmans, Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009; Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2010a; Denier, Gastmans, De Bal, & Dierckx de Casterlé, Reference Denier, Gastmans, De Bal and Dierckx de Casterlé2010b; Dierckx de Casterlé, Denier, De Bal, & Gastmans, Reference Dierckx de Casterlé, Denier, De Bal and Gastmans2010; Galushko et al., Reference Galushko, Frerich, Perrar, Golla, Radbruch and Nauck2016; Georges, The, Onwuteaka-Philipsen, & van der Wal, Reference Georges, The, Onwuteaka-Philipsen and van der Wal2008; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014; van Marwijk, Haverkate, van Royen, & The, Reference van Marwijk, Haverkate, van Royen and The2007; Voorhees, Rietjens, van der Heide, & Drickamer, Reference Voorhees, Rietjens, van der Heide and Drickamer2013).
Importance of Relationships and Communication
A study of physicians, nurses, and psychospiritual health providers explained that a relationship with the patient was an important component of the assistance in dying process (Galushko et al., Reference Galushko, Frerich, Perrar, Golla, Radbruch and Nauck2016). Physicians reported that their relationship with the patient influenced their decision to provide assistance in dying; specifically, they felt more comfortable agreeing to the procedure when they had a strong existing relationship with the patient (Dees et al., Reference Dees, Vernooij-Dassen, Dekkers, Elwyn, Vissers and van Weel2012; Sercu et al., Reference Sercu, Pype, Christiaens, Grypdonck, Derese and Deveugele2012; Voorhees et al., Reference Voorhees, Rietjens, van der Heide and Drickamer2013). In addition, physicians explained that relationships with their patients sometimes declined in response to a refusal to provide assistance in dying (Pasman, Willems, & Onwuteaka-Philipsen, Reference Pasman, Willems and Onwuteaka-Philipsen2013). One study discussed the significance of relationships between the physician and the patient, explaining the importance of growth in those relationships across the entire process (Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014). Physicians in this study explained that the decision to pursue assistance in dying developed through continuous consultation and conversation until the patient and the physician grew towards a consensus (Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014). Physicians explained that without this developing relationship, they felt much less confident in providing assistance in dying (Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014). Similarly, nurses in a study by Denier et al. (Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009) explained the importance of relationship building in caring for patients receiving assistance in dying. In this study, nurses explained that a strong relationship with the patient and family was important for providing quality care for the patient (Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009).
In multiple studies, physicians described the complexities involved in communicating these complex issues to patients. Physicians providing assistance in dying identified miscommunication in the process as a major source for concern (Borgsteede et al, Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014). Physicians explained that miscommunications frequently arose as a result of differing implicit expectations between the patient and the physician, misunderstandings about the rules and regulations surrounding the euthanasia process, and undetailed conversations or vague statements provided by the patient regarding important circumstances within the process (Borgsteede et al., Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014). The prevalence of this miscommunications left many physicians hesitant in their decisions to provide assistance in dying (Borgsteede et al., Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014). Nurses also described the significance of communication in their role in the assisted dying process: explaining the importance of their role in the patient’s becoming certain about the decision, advocating for the patient, and helping the patient come to terms with the decision (Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009, Reference Denier, Gastmans, De Bal and Dierckx de Casterlé2010b; Dierckx de Casterlé, Verpoort, De Bal, & Gastmans, Reference Dierckx de Casterlé, Verpoort, De Bal and Gastmans2006; Schwarz, Reference Schwarz2003). The nurses explained that they communicated with patients through active listening, providing information, translating jargon, consulting with the patient, providing advice, and engaging in non-euthanasia-related conversation to support patients receiving assistance in dying (Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009). Nurses expressed the importance of maintaining an open, attentive, patient, and trustworthy attitude in conversing with patients (Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009).
Interprofessional Roles and Dynamics
A number of the studies discussed interprofessional factors and roles in the assisted dying process. In these studies, providers discussed the importance of collaboration, advising, delegating, and engagement with other professionals and specialists (Denier et al., Reference Denier, Gastmans, De Bal and Dierckx de Casterlé2010b; Galushko et al., Reference Galushko, Frerich, Perrar, Golla, Radbruch and Nauck2016; Kelly et al., Reference Kelly, Burnett, Badger, Pelusi, Varghese and Robertson2003). Galushko et al. (Reference Galushko, Frerich, Perrar, Golla, Radbruch and Nauck2016) examined the perspectives of physicians, nurses, and psychosocial-spiritual health providers, but did not separate the perspectives by profession. Other studies that focused on physician perspectives made no mention of interdisciplinary teams, or even other providers, instead focusing on patient–physician relationships (Borgsteede et al., Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Dees et al., Reference Dees, Vernooij-Dassen, Dekkers, Elwyn, Vissers and van Weel2012; Georges et al., Reference Georges, The, Onwuteaka-Philipsen and van der Wal2008; Kelly et al., Reference Kelly, Burnett, Badger, Pelusi, Varghese and Robertson2003; Pasman et al., Reference Pasman, Willems and Onwuteaka-Philipsen2013; Sercu et al., Reference Sercu, Pype, Christiaens, Grypdonck, Derese and Deveugele2012; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014; van Marwijk et al., Reference van Marwijk, Haverkate, van Royen and The2007; ). In one case, a physician-focused study mentioned physician–physician consultation (Voorhees et al., Reference Voorhees, Rietjens, van der Heide and Drickamer2013), and in another, there was mention of the potential importance of psychiatric consultation (Curry, Shwartz, Gruman, & Blank, Reference Curry, Schwartz, Gruman and Blank2000). Physicians tended to focus their discussions on the decision to provide assistance in dying, and their process of deliberation in making such decisions (Borgsteede et al., Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Dees et al., Reference Dees, Vernooij-Dassen, Dekkers, Elwyn, Vissers and van Weel2012; Georges et al., Reference Georges, The, Onwuteaka-Philipsen and van der Wal2008; Kelly et al., Reference Kelly, Burnett, Badger, Pelusi, Varghese and Robertson2003; Sercu et al., Reference Sercu, Pype, Christiaens, Grypdonck, Derese and Deveugele2012; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014; van Marwijk et al., Reference van Marwijk, Haverkate, van Royen and The2007; Voorhees et al., Reference Voorhees, Rietjens, van der Heide and Drickamer2013). This focus on solitary decision making from the physician perspective conflicts with the findings of Dierckx de Casterlé et al. (Reference Dierckx de Casterlé, Denier, De Bal and Gastmans2010), who concluded that the practice of excluding other health care professionals from decision making was perceived as disrespectful and counterproductive by the sidelined professionals. In fact, nurses felt that interdisciplinary decision making practices actually led to better care (Dierckx de Casterlé et al., Reference Dierckx de Casterlé, Denier, De Bal and Gastmans2010). Denier et al. (Reference Denier, Gastmans, De Bal and Dierckx de Casterlé2010b) specifically examined interprofessional communication from the viewpoint of nurses, and found that nurses felt that their role was particularly valuable in keeping their colleagues informed, consulting about care decisions, understanding conflicting opinions, and mitigating conflict. Complementary to the perspectives of nurses, social workers were optimistic about the potential to expand their role in the assisted dying process (Norton & Miller, Reference Norton and Miller2012). However, social workers felt that they were currently only involved in the process when physicians felt uncomfortable discussing issues of death and dying themselves (Leichtentritt, Reference Leichtentritt2002).
Studies focused on physician perspectives seemed to indicate that physicians viewed their role in euthanasia care as pertaining to decision making in consultation with the patient (Borgsteede et al., Reference Borgsteede, Deliens, Graafland-Riedstra, Francke, van der Wal and Willems2007; Dees et al., Reference Dees, Vernooij-Dassen, Dekkers, Elwyn, Vissers and van Weel2012; Georges et al., Reference Georges, The, Onwuteaka-Philipsen and van der Wal2008; Kelly et al., Reference Kelly, Burnett, Badger, Pelusi, Varghese and Robertson2003; Sercu et al., Reference Sercu, Pype, Christiaens, Grypdonck, Derese and Deveugele2012; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2014; van Marwijk et al., Reference van Marwijk, Haverkate, van Royen and The2007; Voorhees et al., Reference Voorhees, Rietjens, van der Heide and Drickamer2013). In contrast, nurses seemed to view their role as providing hands-on continuous care and support for the patient throughout the entire process of assistance in dying (De Bal et al., Reference De Bal, Dierckx de Casterlé, De Beer and Gastmans2006; Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009, Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2010a; Dierckx de Casterlé et al., Reference Dierckx de Casterlé, Denier, De Bal and Gastmans2010). Nurses felt that it was their role to advocate for the patient’s end-of-life desires, regardless of medical appropriateness, and to provide quality euthanasia care while creating a sense of clarity, peace, and balance for the patient (Denier et al., Reference Denier, Gastmans, De Bal and Dierckx de Casterlé2010b). Similar to the views of nurses, social workers felt that their role in caring for patients was to resolve internal conflict and promote acceptance (Norton & Miller, Reference Norton and Miller2012).
Coping
Many studies investigating nurses examined the feelings that these professionals had during the assisted dying process. Nurses in these studies described their feelings as intense, conflicted, guilty, and in some cases powerless (De Bal et al., Reference De Bal, Dierckx de Casterlé, De Beer and Gastmans2006; Denier et al., Reference Denier, Dierckx de Casterlé, De Bal and Gastmans2009). Many of the studies reported that nurses discussed the importance of taking time for self-care, mourning, and bereavement, recognizing that although the caregivers and family members are the immediate concern, they need to take the time to reflect on the experience for their own mental and emotional health (De Bal et al., Reference De Bal, Dierckx de Casterlé, De Beer and Gastmans2006; Dierckx de Casterlé et al., Reference Dierckx de Casterlé, Denier, De Bal and Gastmans2010).
Studies that focused on physician perspectives also reported a number of complex feelings and emotions experienced throughout the assisted dying process. Physicians discussed feeling a heavy, traumatic, and difficult responsibility (Georges et al., Reference Georges, The, Onwuteaka-Philipsen and van der Wal2008; Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2016; van Marwijk et al., Reference van Marwijk, Haverkate, van Royen and The2007) that resulted in mixed feelings, loneliness, and a sense of loss (van Marwijk et al., Reference van Marwijk, Haverkate, van Royen and The2007). Physicians explained that the negative effects of providing assistance in dying result in a need for emotional support (Georges et al., Reference Georges, The, Onwuteaka-Philipsen and van der Wal2008; van Marwijk et al., Reference van Marwijk, Haverkate, van Royen and The2007).
Discussion
The results of this review indicate the importance of adopting a process view of assistance in dying. Although the Government of Canada currently considers the items required prior to the administration of MAiD, there are no existing standards of care for patients moving through the MAiD process (Government of Canada, 2016). This review provides evidence of the value of various health professional perspectives, indicating that the views of all parties involved in assistance in dying should be considered in the development of future policy in Canada.
As demonstrated through existing literature, relationships and communication in caring for persons receiving assistance in dying are crucial for quality care. There exists a clear potential for the use of relational care methods to support patients in attaining peace and clarity in the assisted dying process. It is evident that the patient, the caregiver, and entire care team should be involved in consistent and clear communication across the process. Fujioka et all. (2018) identified the lack of interprofessional collaboration and role ambiguity as challenges for health care providers involved in MAiD. Additionally, recent qualitative work by McKee & Sellick (Reference McKee and Sellick2018) concluded that, for Canadian physicians, the largest source of stress in the MAiD process stemmed from administrative or institutional barriers. The results of this review support a shift towards a more interdisciplinary approach to MAiD care in all provinces. Li et al. (Reference Li, Watt, Escaf, Gardam, Heesters and O’Leary2017) have implemented an interprofessional MAiD framework in Ontario hospitals, suggesting that these models can be successful in Canadian contexts. Retchin’s (Reference Retchin2008) conceptual framework for interprofessional and co-managed care also suggests that an interprofessional team-based approach would be successful in MAiD care. As explained in Retchin’s (Reference Retchin2008) framework, the longer time frame and relatively low urgency of care required in the MAiD process provide an ideal situation for interprofessional collaboration, allowing time for team meetings and care planning. A shift towards an interprofessional model would work to enhance care quality for patients, while acknowledging the contributions of all providers involved. Interprofessional approaches may also support better coping among professionals involved in the process by creating a network for support and an environment of understanding.
Limitations
This scoping review limited its search to articles published in the English language, and did not involve a grey literature search, because of the review’s focus on qualitative research findings. Several of the articles included in this review were completed by the same authors, using the same data set. These articles were ultimately included, as each focused on a different topic in analyzing the data.
Conclusions
The results of this scoping review build on the work of Fujioka et al. (Reference Fujioka, Mirza, McDonald and Klinger2018), who worked to identify key challenges faced by MAiD providers. This review uniquely identifies the major themes and findings of the qualitative research pertaining to experiences and perspectives of health care professionals involved in the assistance in dying or euthanasia care process. As identified by Fujioka et al. (Reference Fujioka, Mirza, McDonald and Klinger2018), existing research provides some insight into the perspectives of physicians and nurses, but little has been published on the experiences of social workers or other allied health providers. In fact, this review returned no results related to the experiences of psychiatrists, pharmacists, or speech language pathologists, despite the inclusion of these professionals in provincial plans.
Although understanding the views of health care professionals is important, it is equally as critical to recognize the perspectives of patients and caregivers who experience these processes. The experiences and perspectives of patients and their caregivers should be a crucial consideration in developing a complete understanding of the assisted dying experience, and in developing future policy and care improvement initiatives.
