Abstract
Background: Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination.
Methods: In this qualitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis.
Results: We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems).
Interpretation: Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.
The relationship between the practice of medical assistance in dying (MAiD) and palliative and end-of-life care (PEOLC) in jurisdictions where both are available has been variable and sometimes tenuous.1 Although many PEOLC services and physicians in Canada are engaged in MAiD,2,3 national palliative care societies in Canada and elsewhere have not endorsed this practice.3–8 Meanwhile, demand for both MAiD and PEOLC has grown in Canada in recent years.4–6
Adults in Canada with a grievous and irremediable medical condition and a “reasonably foreseeable death” have been able to legally pursue MAiD since 2016.7 Eligibility for MAiD was extended in March 2021 to include people without a fatal or terminal condition.8 A further extension was planned for March 2024, to allow MAiD to be available to people whose sole underlying condition is mental illness.9,10
From 2016 to 2022, 44 958 people in Canada chose to end their lives through MAiD.10 In 2022, MAiD accounted for 4.1% of all deaths in Canada.10 The frequency of MAiD in Canada has increased by 20%–30% annually since its introduction.6,10–12 This practice is expected to grow as eligibility for MAiD has broadened to include people whose death is not “reasonably foreseeable.”8,13 Although a framework and action plan for PEOLC in Canada has been developed,14,15 the introduction and growth of MAiD in Canada has occurred without clear policies or guidelines in relation to its concurrent delivery with PEOLC.16,17 Further, there has been a lack of consensus on how MAiD and PEOLC services should relate to each other in practice.18 This policy gap has posed challenges for the collaborative planning of both services to ensure optimal delivery.19–28
Our aim was to understand the perspectives of health leaders in Canada with expertise in MAiD, PEOLC, or both on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. Whereas previous research has focused on the perspectives of patients and caregivers,29–31 we focused on health leaders who have roles in developing and modifying policies about MAiD or PEOLC.
Methods
Study design and setting
We have published the protocol for this qualitative study elsewhere. 32 We conducted interviews with health leaders across Canada with expertise in MAiD, PEOLC, or both and who have been involved in developing policy or modifying practice. Our study has fulfilled the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Appendix 1, Section 1, available at www.cmaj.ca/lookup/doi/10.1503/cmaj.231241/tab-related-content). To protect participant confidentiality, we did not report potentially identifying information.
The research team consisted of people from diverse career stages (trainees, early, mid-, and senior career), ethnicities (self-identifying as White, Asian, and other), gender (female and male), and place of birth (Canada, China, and Scotland). All team members lived in Toronto, Canada, during the completion of this research, and were living in Canada when MAiD was introduced. The research team was multidisciplinary, with expertise in health policy, health services, bioethics, psychiatry, palliative care, and clinical and health psychology. The research team also included PEOLC-only providers as well as PEOLC and MAiD providers, and held diverse views on the optimal relationship between PEOLC and MAiD.
Reflexive practices that maximized the rigour of our findings included the publication of the research protocol before data collection, refinement of the interview guide by team members, having 2 coders of data, an open discussion of themes, and reflection on the team’s positionality during team meetings. We identified potential participants through recommendations from team members, based on their large national professional network, and through snowball sampling.
Study framework
We chose the Integrated Health Services (PATH) framework33 to guide our analysis, because of its focus on understanding multiple levels of the potential integration of health services and its demonstrated ability (through use in case studies) to guide recommendations for services.34–37 This framework was valuable in examining the relationship between MAiD and PEOLC services and in understanding considerations for coordinating these services on 4 levels: client-centred services (we used “client-centred” rather than “patient-centred” because this is the terminology of the PATH framework), health operations, health systems, and intersectional initiatives. The PATH framework guided the development of questions included in the interview guide and data analysis.
Participant sampling and recruitment
We purposively sampled 19 participants to optimize representation of leaders with knowledge and expertise in MAiD, PEOLC, or both, as well as experience developing and modifying MAiD or PEOLC policy or managing large PEOLC teams. We employed snowball sampling to recruit 17 additional participants (Appendix 1, Section 2). We sent prospective participants an email invitation to participate in the study.
Data collection
We conducted semistructured interviews from April 2021 to January 2022, and collected sociodemographic characteristics of the interviewees. The development of the interview guide is described in the protocol (Appendix 1, Section 3).32 We conducted and audiorecorded interviews using a videoconferencing online platform. We used respondent validation during the interviews and checked emerging themes with interviewed participants to ensure the accuracy, validity, and generalizability of the findings.
Data analysis
We transcribed interviews verbatim using an online machine transcription service (Temi.com). An independent rater (E.T.) verified and deidentified transcripts before adding them to NVivo 12 for qualitative data analysis (NVivo, QSR International, version 12).
We analyzed data using conventional content analysis methodology. 38 Two authors (G.K.S., E.T.) conducted the initial open coding independently. After analyzing 10 transcripts, we compared and categorized codes and developed them into an initial coding scheme. We applied these codes to new transcripts and revised accordingly. We added further categories to reflect nuances and novel issues in the data. We used systematic comparative analysis to identify differences and similarities among participant accounts. Iterative analysis continued until data saturation was reached. To minimize bias, 2 research team members (R.N. and G.R.) reviewed codes and themes. We discussed codes until there was consensus.32 Similar to Jarvis and colleagues, 39 we used an inductive approach to examine participant experiences and attitudes regarding MAiD and PEOLC to develop the coding framework, and subsequently a deductive approach to examine themes using the PATH framework. We include quotes, even for single words, in the interpretation to emphasize how themes are grounded in participants’ own words.
Ethics approval
The study was approved by the University Health Network Research Ethics Board (No. 19-5518).
Results
Participant characteristics
We conducted 36 interviews. Most participants self-identified as White (83%), female (72%), and nonreligious, agnostic, or atheist (53%) (1 (53)). Central Canada was most represented, with a substantial minority (31%) of participants, and 2 were from Quebec (6%). Most participants had a health professional role (64%), in addition to roles in other sectors. Leadership roles included medical and nursing division heads, program directors and managers, presidents or CEOs of nongovernmental societies or associations, lead government policy analysts, scientists with expert specialization in MAiD or PEOLC or both, and chairs of advisory committees.
Demographics of study participants
Most participants (64%) were supportive of the legalization of MAiD. Those who were against, or neutral, generally accepted people’s right to make their own decisions. Interviews lasted on average 56 minutes.
The optimal relationship between MAiD and PEOLC
Participants noted that MAiD remains a relatively new practice in Canada and that more time is needed to adjust its relationship with PEOLC and other health services. They reported that there has been “improvement” and “better communication” in the relationship between practitioners of these services over time: “Initially it really felt like 2 separate worlds, and that was a bit of a challenge and barrier to good patient care in some ways, but that’s getting much, much better. There is better communication for sure.”
Participants expressed diverse views about the optimal relationship between MAiD and PEOLC (Table 2). Nevertheless, there was an overall recognition that some degree of cooperation is required for appropriate service referrals, care coordination, and prioritizing patient care.
Optimal relationship between medical assistance in dying and palliative and end-of-life care
Some felt that MAiD and PEOLC had distinct and often incommensurable goals and suggested that they should be separate services. They expressed concern that integrating the services could cause patients to be confused about the respective roles of these services. Some suggested that the burden of clinical care at many centres limited the capacity of PEOLC providers to dedicate time and effort to formally coordinating or integrating MAiD and PEOLC services.
In contrast, other participants believed that MAiD and PEOLC should be fully integrated and described MAiD as an “extension” or “continuity” of PEOLC. They emphasized that PEOLC is a shared goal of both services, and some suggested that the ideal integration would be individual clinicians providing both services.
Some participants advocated for these services to be coordinated, as this would be the best approach to allow teams to support their shared patients, prioritize patient care, respect patients’ wishes, facilitate open communication, and improve service access. Participants also acknowledged that some patients who are eligible for MAiD would not necessarily require PEOLC, particularly with anticipated changes to the legislation regarding MAiD and mental illness.
Enhancing relationships between MAiD and PEOLC services
Participants described ways to enhance relationships between MAiD and PEOLC, which we have organized into themes across the 4 PATH Framework levels (Figure 1): client-centred services (1), health operations (5), health systems (4), and intersectoral initiatives (1). Representative quotes for each theme are included in Table 3.
Overview of themes, by PATH level. Note: PATH’s framework describes the relationship of services on 4 levels: a) client-centred services, focusing on clients, families, and the broader community; b) health operations, focusing on the planning and delivery of services; c) health systems, focusing on coordination at the regional, provincial, and national level, which includes broader governance and capacity issues; and d) intersectoral initiatives, including intersection with more than 1 system. Note: MAiD = medical assistance in dying, PEOLC = palliative and end-of-life care.
Themes and selected quotes by PATH framework level
Client-centred services
Educate patients and public
Participants advocated for greater education for patients and the public about MAiD and PEOLC (e.g., roles and boundaries of each service). This was recognized as challenging, given what participants viewed as a “death-denying culture,” in which open discussions about death and dying are associated with stigma or discomfort.
Health operations
Educate providers
Participants described the importance of educating and training MAiD and PEOLC providers about both services, to help shift any “barriers” or “misunderstandings on both sides.” They suggested that this would better equip providers with the “skills and tools” to have informed and comprehensive discussions on PEOLC with their patients.
Clarify institutional policies and guidelines
Some participants expressed frustration with the lack of clarity about policy or guidelines regarding the relationship of MAiD and PEOLC services. Some indicated the need for clearer institutional policies, particularly regarding access and effective referral. In the absence of clear guidelines, participants described the potential for some providers to “project” their personal beliefs onto patients by refusing to refer patients, ultimately creating “barriers” and “doing harm” to patients.
Foster cultural safety and collegial relationships
The importance of “mutual respect” and clear “communication” between MAiD and PEOLC teams resonated with many participants. They acknowledged the overall emotionally challenging nature of PEOLC, the “controversial” relationship between MAiD and PEOLC, and the resultant “tension,” “trepidation,” and “uncertainty.”
Participants emphasized the need to support the “autonomy of the provider,” the “choice to opt out,” and the experiences of “uncertainty” and “moral distress,” particularly in those who conscientiously object to MAiD. However, some noted that a minimum professional requirement should be to “put their patient’s need first” and to “refer” or “transfer” patients to MAiD, regardless of personal beliefs.
Those involved in MAiD described the “difficult” and “isolating” nature of MAiD work. Some disclosed feeling “not valued,” like a “target,” and “in the firing line,” and described “disrespectful” and “painful” experiences from some colleagues for being a MAiD assessor or provider. Considering this, participants noted the importance of fostering “cultural safety” and described feeling “lucky” when there was a respectful relationship between teams within their organizations. They expressed that the opportunity to be “in the same room” and to have “open,” “two-way dialogue” allowed both teams to acknowledge their shared value of patient-centred care. When present, collegial relationships were described as helpful in facilitating referrals and coordinating treatment for patients. Greater contact and trust between MAiD and PEOLC providers and teams was reported to facilitate increased communication and collaboration, alleviate fears, and “demystify” misunderstandings.
Create multidisciplinary MAiD teams with a clinical coordinator
Participants emphasized that having a dedicated multidisciplinary MAiD team was helpful in facilitating a comprehensive understanding of patients’ needs, streamlining MAiD service delivery, and coordinating efficient referrals between related services. Participants described the importance of having a clinical coordinator to act as the “point of contact” for patients and health care providers, and to direct patients to the service that matches their needs. Having a single MAiD team was also described as important for enhancing “peer support” and developing a “community of practice.”
Cultivate compassionate and proactive leadership
Participants acknowledged the role of “significant,” “proactive,” and “influential” leaders in setting the tone for the relationship between MAiD and PEOLC. Some believed that leaders who conveyed strong opposition to the views of others or did not provide “explicit communication” created barriers for collaboration. Some described that having “open-minded” and “compassionate” leaders who were “committed” to “respecting” all views helped to ensure that “the whole system can function overall together.”
Health systems
Provide standard practice guidelines within professional regulatory bodies
Participants described a need for greater “clarity” of boundaries, standards, and regulation within their professional regulatory bodies regarding the relationship between MAiD and PEOLC services, while maintaining “flexibility.” They also noted tension between the importance of “a policy of noncompulsion” (i.e., not requiring any physician to be involved in the delivery of MAiD) for providers while ensuring availability of MAiD to patients through physicians making an effective referral.
Determine the role of religion in health institutions
Participants acknowledged the “complex” and “polarizing” relationship between MAiD and PEOLC, particularly in institutions influenced by religion (e.g., in funding, history, or governance). They were divided on whether faith-based, publicly funded institutions should be exempted from providing MAiD. Some expressed concern about the religious institutional barriers for patients who consider MAiD and regarded the requirement to transfer patients who seek MAiD out of religious institutions as “disgusting,” “cruel,” and “unnecessary.”
Others emphasized the importance of faith-based institutions maintaining the right to refuse to provide MAiD. They noted the negative impact that providing MAiD would have on their ability to maintain donor funding and therefore to provide quality care within their institutions. They also indicated that patients could be “easily” transferred elsewhere to receive MAiD. They disagreed with “heavy-handed” approaches or being “forced” to provide MAiD, and they likened MAiD to other services that some institutions do not provide.
Conduct broad and inclusive consultation and planning
Participants emphasized the importance of broad consultation and planning in facilitating the relationship of MAiD with PEOLC. They highlighted the need to have the “right” people at the table in a “respectful” way from the planning stage to ensure that the “whole system can function together.” Participants described this as an opportunity to have “complex conversations,” amplify diverse voices regarding MAiD (e.g., “It’s not so much [being in] the same room as who gets to speak”), and address concerns.
Increase funding for MAiD, PEOLC, and coordination
Participants noted the “fixed pie” of resources in a “system under stress” and reported competition for funding and resources between MAiD and PEOLC services. They discussed a need for greater funding for PEOLC. The “attention” and “funding” that MAiD has received in recent years was described as a potential “threat” to PEOLC, ultimately negatively affecting the relationship between services. Participants noted that there is inadequate funding to allow for service “coordination,” “consistency in services,” and equitable access to care, which made achieving a coordinated relationship between hospice MAiD and PEOLC services challenging. Others expressed the need for more support for “dedicated” time for providers involved with MAiD. They also advocated for greater funding for a clinical coordinator to provide strong administrative and navigation support for patients and other health care providers.
Intersectoral initiatives
Ensure oversight and standardized practice across Canada’s health care systems
Participants reported a “disconnect” between the introduction of the MAiD legislation in Canada by the federal government and the “operationalization” of MAiD at the level of health systems. Some expressed their preference for a unified national approach that shows “leadership” and “direction” about the needed infrastructure to “standardize” MAiD practices (e.g., forms), clarify “legislative nuances,” and provide guidance on the optimal relationship between MAiD and PEOLC. Some participants expressed their wish for a “uniform approach for oversight” and a “centrally coordinated” system to maintain “consistency” across the country. However, some noted this would require a “balancing act” to allow for “flexibility” for inherent differences in patients’ wishes and needs across jurisdictions. Conversely, others believed that the federal role should be more “circumspect,” to allow for autonomy in service delivery at provincial, territorial, and institutional levels.
Interpretation
This national qualitative study of the perspectives of health leaders regarding the relationship of MAiD and PEOLC in Canada revealed divergent views about the optimal relationship between these services. However, leaders recognized, overall, that a collaborative relationship of some kind is required for appropriate referrals, care coordination, and patient care. Accordingly, a “distinct but collaborative” approach to the concurrent delivery of MAiD and PEOLC may be the most feasible approach at present, especially as MAiD eligibility has been extended in Canada to include people without a terminal condition.8,13 Because MAiD criteria in Canada no longer stipulate a “reasonably foreseeable death,” MAiD is now accessible to patients who may not receive or require PEOLC.8 Therefore, it is possible that health leaders’ perspectives about the optimal relationship between MAiD and PEOLC services will change. It is planned that some patients with mental illness will be eligible for MAiD after March 2024; the optimal relationship between MAiD and psychiatric services will require careful consideration.9
The findings of our study highlight the philosophical and practical challenges involved with the integrated delivery of MAiD and PEOLC services in Canada. The views of some of those we interviewed contrast with recent assertions that service integration is the “gold standard” to prioritize patients’ needs, improve access to and quality of services, and improve the overall effectiveness and efficiency of health care systems. 40,41 Although more than three-quarters of patients in Canada who received MAiD also received palliative care,10 there have been complaints from patients and families who were told they would no longer be able to access PEOLC services after requesting MAiD.42 Furthermore, the transfer of patients desiring MAiD who are receiving care in institutions with strong objections to providing MAiD is often perceived as suboptimal and impractical.43 The preference of most participants in our study was for a coordinated, rather than fully integrated, relationship between MAiD and PEOLC. A similar coordinated approach is in place in countries such as Belgium, where MAiD and palliative care services coexist in “a largely unproblematic and even synergistic way.”1
Our study also identified key considerations to enhance the relationship between MAiD and PEOLC, which we organized using the PATH framework (Figure 1). Although this framework offered a systematic approach to guide our study design and analysis, most of the themes generated were at the health operations and health systems levels; only 1 theme was generated on client-centred services. This may be because we interviewed health leaders who operate in these realms and the interview guide focused on these areas. The themes generated would likely have been different if we had interviewed other participant groups (e.g., patients and caregivers).
Health leaders in this study emphasized the need for greater patient, public, and provider education about MAiD and PEOLC to reduce misunderstandings about both services and their current and future relationship. This is consistent with previous research that identified public education on MAiD and palliative care as an important health priority,44 along with increased specialized training in MAiD communication.18,45 Many PEOLC curricula have begun incorporating training on assisted dying.46,47 Moreover, a national MAiD curriculum aimed at health care providers is currently in development in Canada,48–50 and may also serve to address this need. Public education campaigns that help to clarify who is eligible for MAiD, how to request MAiD, and where to find information could direct the public to a user-friendly and dependable website, which has nuanced information for the public across different Canadian jurisdictions. There should also be greater effort to provide education tailored for the patient population that is eligible for MAiD. A recent environmental scan of available resources for patients considering MAiD in Canada indicated that few educational resources have adequate understandability and actionability, particularly for patients with low health literacy and those who are not proficient in English or French.51
Across multiple PATH levels, the need for clarity and standardization in institutional polices, operationalization of MAiD, and practice guidelines within professional regulatory bodies was emphasized. A more consistent approach across jurisdictions may help to ensure a uniform standard of care and consistent practice, compliance with legal requirements, and clarity on the concurrent delivery of services, while allowing for flexibility and autonomy at the provincial, territorial, and institutional levels. Health leaders also highlighted the importance of compassionate leaders to ensure a respectful relationship between services and the fostering of cultural safety and collegial relationships. Facilitating communication that focuses on the common goals between MAiD and PEOLC teams (e.g., patient-centred care) is critical to improving the relationship between providers of these services.
Finally, consistent with previous findings,17,52,53 inadequate funding of PEOLC in Canada was also identified in this study as a challenge for both services and for the coordination of care. For example, health leaders expressed concerns about timely and equitable access to both services, and the perceived competition for limited resources. Although some health leaders may perceive funding for PEOLC and MAiD as competing, this view may arise because there are substantial needs and insufficient funding in both areas. Currently, it is not clear whether or in what way the attention to MAiD has affected resources provided to PEOLC.
Limitations
The data we collected were cross-sectional, and health leaders’ opinions and attitudes may evolve over time. Despite our purposeful sampling, there was an overrepresentation of participants identifying as White and those located in central Canada. There was an under-representation of participants from Quebec, even though we offered to conduct the interview in English or French. This may limit the generalizability of our findings, especially given the novel role Quebec played in leading the provision of MAiD in Canada.
Our study was not comprehensive in interviewing all key parties, although the views of patients, caregivers, and the public have been previously investigated.29–31,54 Although we had anticipated that health leaders who supported MAiD would be more willing to participate in the study,32 diverse views on MAiD were evident in the responses. Further research with representative samples of health leaders and with quantitative methods is needed to better understand attitudes toward MAiD and its relationship with PEOLC.
Conclusion
This study highlights the wide-ranging views held by health leaders regarding the optimal relationship between MAiD and PEOLC in Canada. However, there was overall recognition that some degree of coordination between MAiD and PEOLC is required for optimal patient-centred care. In Canada, where MAiD eligibility has been extended to include people without a terminal condition, options are needed for patients to be able to access MAiDonly services, PEOLC-only services, and both MAiD and PEOLC services. In this study, health leaders identified the need for public and provider education, standardization of practice guidelines and oversight, relationship-building, and leadership. These findings have implications for improving MAiD and PEOLC policy development and clinical practice across Canada and informing policy in other jurisdictions.
Acknowledgement
The authors gratefully acknowledge the health leaders who participated in this study.
Footnotes
Competing interests: Gilla Shapiro reports receiving a Canadian Institutes of Health Research (CIHR) 2019 Fellowship Award (MFE 171271), in support of the present manuscript. Dr. Shapiro reports receiving consulting fees from the World Health Organization, honoraria from Toronto Public Health, and a CIHR funding grant (no. 185783), all outside the submitted work. Madeline Li reports receiving a CIHR project grant in support of longitudinal MAID research and income as the project lead and working group chair of the Canadian Association of MAiD Assessors and Providers MAiD Curriculum project. Dr. Li has also received honoraria from Memorial Sloan Kettering Grand Rounds, Southlake Grand Rounds, Tulane University School of Medicine, and the Korean Psycho-Oncology Society, as well as payment for expert testimony in the case of Lamb v. Attorney General of Canada (all outside the submitted work). Dr. Li reports serving as Director of Medicine of the Board of Canadian Association of Psychosocial Oncology (CAPO) and Chair, Research Advisory Committee, CAPO (unpaid positions). No other competing interests were declared.
This article has been peer reviewed.
Contributors: All authors contributed to the conception and design of the work. Gilla Shapiro, Eryn Tong, and Gary Rodin drafted the manuscript. All authors revised the manuscript critically for important intellectual content, gave final approval of the version to be published, and agreed to be accountable for all aspects of the work.
Funding: This work was supported by the call for collaborative research funding issued by the Global Institute of Psychosocial, Palliative and End-of-Life Care, the University of Toronto Division of Palliative Medicine, and the Dalla Lana School of Public Health to Gilla Shapiro. The funders of the study played no role in the study design, data collection, data analysis, data interpretation, or writing of this manuscript.
Data sharing: Data available by reasonable request from the corresponding author.
- Accepted December 21, 2023.
This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: https://creativecommons.org/licenses/by-nc-nd/4.0/
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