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Abstract
The availability of willing providers of medical assistance in dying (MAiD) in Canada has been an issue since a Canadian Supreme Court decision and the subsequent passing of federal legislation, Bill C14, decriminalised MAiD in 2016. Following this legislation, Hamilton Health Sciences (HHS) in Ontario, Canada, created a team to support access to MAiD for patients. This research used a qualitative, mixed methods approach to data collection, obtaining the narratives of providers and supporters of MAiD practice at HHS. This study occurred at the outset of MAiD practice in 2016, and 1 year later, once MAiD practice was established. Our study reveals that professional identity and values, personal identity and values, experience with death and dying, and organisation context are the most significant contributors to conscientious participation for MAiD providers and supporters. The stories of study participants were used to create a model that provides a framework for values clarification around MAiD practice, and can be used to explore beliefs and reasoning around participation in MAiD across the moral spectrum. This research addresses a significant gap in the literature by advancing our understanding of factors that influence participation in taboo clinical practices. It may be applied practically to help promote reflective practice regarding complex and controversial areas of medicine, to improve interprofessional engagement in MAiD practice and promote the conditions necessary to support moral diversity in our institutions.
- consciousness
- euthanasia
- attitudes toward death
- care of the dying patient
- end-of-life
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Introduction
In Canada, medical assistance in dying (MAiD) practice became legally accessible to all Canadians following the Carter v. Canada case. This case led to the creation of Bill C14 (online supplementary appendix 1) in 20161 which is the overarching legal framework in which all MAiD practice is carried out.
Supplemental material
At the outset of MAiD practice in 2016, it was characterised by many as a troubling issue for health professionals, as it felt like a departure from how some perceived the goals of medicine. At this time, only half of all physicians were in favour of MAiD according to the report published by Medscape.2 No physician or nurse practitioner is obligated to provide MAiD care, thus patient access to this taboo medical practice rests entirely on healthcare provider’s willingness to engage in this practice. In the context of euthanasia, there exists a historic preoccupation with conscientious objection (CO) or conscientious objectors (COs) in taboo medicine such as MAiD, yet very little academic literature or theorisation addressing conscientious participation (CP) or conscientious participants (CPs). Professional practice guidelines generally address only the rights and responsibilities of COs and how they enact their right to objection. For example, the College of Physicians and Surgeons of Ontario (CPSO) policy on MAiD has a significant subsection titled ‘Conscientious Objection’. This subsection expressly states that ‘The federal legislation does not address how conscientious objections of physicians, nurse practitioners, or other healthcare providers are to be managed.’3 However, this policy makes clear that providing an effective referral for MAiD is not considered an act that ‘assists’ in MAiD, and that all medical options must be explored with patients.3 The Canadian Medical Association (CMA) uses similarly vague language in their policy, and explicitly states the rights of COs to have their deeply held values protected, while simultaneously stating that ‘to enable physicians to adhere to such moral commitments without causing undue delay for patients pursuing this intervention, health systems will need to implement an easily accessible mechanism to which patients can have direct access’.4 This suggests an expectation that CPs will make themselves available to resource this practice and meet patient requests, but no guidance is provided for either recruitment or support of CP. There is no recognition in these guidelines of the significant risks that providers of MAiD assume, and there is no recognition that their participation is itself an act of conscience.
How, then, do we understand the motivations of CPs? How do we create the conditions that facilitate providers to step in? How can we identify who might be CPs? How can we support potential providers in self-identification and create enabling structures to encourage and sustain their participation? This research aims to answer these questions through the narratives of CPs in MAiD practice in Canada.
Background
Conscience in the bioethics literature
Current literature on conscientiousness tends to emphasise a variety of conditions under which an objection to any given practice might arise. These objections range from the utterly unpalatable, such as racist or sexist or otherwise phobic ideology, to objection on the grounds of religion or personal values and protection of moral integrity.5 However, the grounds for what constitutes objection remain broad and unrefined. The ethical question, however, becomes one of accommodation. What types of objections should be accommodated, and under what circumstances?
Citing Ancell and Sinnot-Armstrong, Card5 states that ‘physicians possess wide freedoms to determine the scope of their medical practice and therefore they have the freedom to lodge some conscientious objections’.5 Myskja and Magelssen discuss the potential harm caused by a clinician objecting to a particular practice, stating that there exists a potential for ‘four kinds of harm: delayed or restricted access to services; increased expenses; lack of important information; and the communication of moral disapproval of the patient’s choices or lifestyle’.6 This can be offset by adequate accommodation by colleagues, however that is not without potential impact on them.6 They additionally state:
It is not clear that the principles of toleration and freedom of conscience can justify tolerance of conscientious objection in professional life. Arguably, changing jobs or even profession is not something that affects fundamental issues of identity, and is a reasonable alternative if the job requires acts that are contrary to conscience.6
Should it then be true that health professionals are obligated to accommodate their objecting colleagues, or that the objecting colleagues are obligated to perform the task? Magelssen7 makes the argument that there are certain conditions under which an objection should be accommodated:
It must be a deeply held conviction, and otherwise performing the act would cause harm to the providing clinician.
The CO should be able to provide clear, coherent reasoning as to why this act would cause them harm.
The practice in question is not necessarily an essential aspect of the clinician’s duties.
The objection is not unnecessarily burdensome to the patient, other healthcare providers or colleagues, or the system at large.7
It remains unclear if these conditions are precipitating CO in MAiD practice, as empirical literature on the subject is still emerging in the Canadian context. However, in the professional practice guidelines (such as the CPSO or the CMA guidelines) there is no mandate to declare if the CO has met these criteria. Thus, it is possible that clinicians may be objecting for a whole host of reasons that have nothing to do with conscience, such as workload, lack of competency, emotional avoidance, fear, and so on.
Participation in taboo medicine
What little literature exists relating to CP of taboo medical practice comes from the bioethics literature on abortion provision. In this literature, these articles centre on themes of autonomy, activism, front-line healthcare challenges and patient advocacy as motivators of CP.
In an article that explores the self-reported reasoning for physicians that elected to provide abortion amidst controversy, Harris states:
Most are narratives of activism, commitment, stories of the personal rewards that come from caring for memorable patients. Often, they are ‘life on the front line’ stories—tales of conflict with anti-abortion forces, and the personal and family sacrifices, including harassment, death threats and violent attacks—made to support women’s right to choose abortion.8
In the article ‘Dangertalk: Voices of abortion providers’ by Martin et al,9 the authors identify several areas in which there are tensions created in the narratives of providers and the discourse of taboo medical practice. One physician stated, ‘I still to this day say to myself I hope I’m doing the right thing. That never goes away. I embrace [this uncertainty] as healthy because … it lets me know that certainty about being right is not necessary to move forward.’9 Rather, this physician suggested that supporting a patient’s wishes is a greater motivator that being perceived as ‘right’ or as ‘doing the right thing’ by their colleagues, the public or themselves.
Summarising the literature up to the year 2000, Curry et al 10 state:
It has been established that attitudes toward PAS [Physician Assisted Suicide] are shaped by multiple factors, such as the physician’s demographic and personality characteristics, personal values, religiosity, respect for patient autonomy, fear of litigation, and experience with terminally ill patients. However, the complex interrelationships among these factors are not well understood.10
While this article addresses some of the key features of providers of MAiD and the requirements of a provider conducting this practice, it remains centred largely around the risks and negative attributes of the practice as opposed to the motivators.
Gaps in the bioethics literature on CP
In the past 20 years, PubMed has 404 articles listed to date that concern CO. As of April 2019, there are 40 articles pertaining to CO published this year, suggesting that 2019 will yield the highest number of publications on this topic to date and that interest in this topic is increasing. When searching using the terms ‘conscientious’ and ‘participation or support or involvement or contribution’, there were no obvious results that were distinct and separate from the literature on CO. Most notably, there was no literature when searching for ‘best matches’ that specifically discussed an act of CP in any given medical practice. Rather, perhaps the closest article described the act as ‘conscientious non-objection’.11 This is problematic, as it leaves an empty space for language to describe the act of conscience where a person may actively, morally and purposefully support a practice. Given the absence of language and theory we suggest the use of CP or CPs to describe those that fall within this category.
This absence is unsurprising because the voices of those that object are often the dominant voices, as observed by Curry et al.10 They state that
Although the role of physicians’ personal values is critical to ongoing discussions about legalization of PAS [physician assisted suicide], polarized views such as those articulated by participants in this study are not likely to be reconciled. The tenor of the voices on either side suggest the fissure might be exacerbated by the adamant positions of those opposed to PAS, as the views of physicians in favor of PAS were frequently tempered by qualifying conditions.10
Overall, the predominance of objection as a focus in the ethics literature creates a chilling effect for the voices of participants.
An additional gap in the literature pertaining to MAiD is the experience of nurses and other health professionals. A number of Canadian health professional associations and colleges have released policies and guidance for MAiD participation, such as the Ontario College of Pharmacists12 and the Ontario College of Social Workers and Social Service Workers.13 Despite the recognition of the importance of interprofessional engagement in this practice, these guidelines give little insight into what supports might be needed for non-clinician professionals engaged in this practice. Denier et al provide a rare paper that explores the nursing perspective in relation to the experience of providing MAiD in Belgium. Nurses reported feelings an ‘intensity’ around the experience of provision and the time leading up to it, they also state that the ‘euthanasia care process is much deeper, much more conscious than a normal deathbed because one often still has good conversations with the patient and the family until the final moment’.14 They additionally state that ‘Nurses also described that a euthanasia [MAiD] death is often more peaceful than a natural deathbed’.14
This publication of literature that pertains to the negative, or challenging, aspects of MAiD has remained predominant, to the exclusion of other voices. This paper will seek to provide a counterbalance to this narrative by exploring the reasoning behind participation in taboo medicine, the benefits of MAiD participation, and explore the conditions that precipitate active CP through the use of qualitative research methods.
Methods
This paper describes the results of a qualitative, mixed methods study. The data comprised interviews conducted at the outset of MAiD practice in Canada in 2016–2017, followed by focus groups with the MAiD (Assisted Dying Resource and Assessment Service, ADRAS) team and interviews with leadership 1 year into practice in 2017–2018. All participants in this research were actively engaged in MAiD practice, either through administrative roles directly related to MAiD practice, or as providers and assessors. The demographic data of the participants are captured in table 1. These data are augmented by informal observations and meetings with the ADRAS team during its formative period from 2016 to 2018.
Individual interview n:11, focus groups n:14
Study location and context
This study took place at Hamilton Health Sciences (HHS) in Hamilton, Ontario, Canada. Hamilton has a population of over 500’000, with five hospital sites varying in specialty. This hospital system is a tertiary care centre serving the entire Hamilton/Niagra region of over 2 million people. It includes an oncology center and palliative care hospital, as well as specialized acute care hospitals and a community hospital. It is a secular healthcare system that is publicly funded. At the time of the initial interviews, the majority of the participants were based at either the oncology centre, or the acute care hospitals. During the study period, the ADRAS team processed 84 requests for MAiD.
Participant recruitment and inclusion criteria
Participants were recruited for the individual interviews using snowball sampling, with ADRAS members being the primary points of contact. The focus groups were assembled through targeted recruitment of participants on both the ADRAS team, and leaders responsible for the oversight of MAiD practice at HHS. This study excluded healthcare providers, managers and administrators that did not have a role in MAiD provision, support or oversight.
Assisted Dying Resource and Assessment Service
The ADRAS is an interprofessional team that can respond to MAiD requests directly, and offer clinical support to patients and staff. The purpose of ADRAS is to address the complex needs of patients and healthcare providers as they navigate the legal, social and clinical challenges of the MAiD process. This team uses an interdisciplinary approach in order to provide high-quality, whole-person, value-based and evidence-informed MAiD care. (HEALTH ORGANISATION) now manages over 100 MAiD cases with the support of ADRAS annually, with increased growth expected in the coming years as MAiD becomes more widely accepted as an end-of-life care option.
MAiD administrators
While providers and assessors directly involved in MAiD practice through ADRAS form the majority of study participants, administrators that supported and facilitated this practice through resource allocation, professional oversight, advocacy at an institutional level and coordination of service across the hospital system were additionally included.
Ethics approval
This study was submitted to the Hamilton Integrated Research Ethics Board (HIREB) for approval in 2016. Participants were told that the data collected would be confidential, and when circumstances dictated, a pseudonym would be used in place of their name. No participants wished to be identified; however, many expressed that they are not secretive about their involvement in this practice. Given this small study population, gender-neutral pronouns have been used throughout in order to maintain the confidentiality of their identities.
Analysis
Analysis of the interviews and focus groups was conducted using an inductive analytical approach, where codes emerge naturally from the data rather than from preconceived categories. Coding software in the form of NVivo V.10.0 was used for the purposes of data organisation. The coding structure closely resembles the layout of the Results section of this paper. The questions in the individual interviews sought to explore the narrative of providers as it relates to their decision to become a CP and engage actively in MAiD practice (online supplementary appendix 2). The focus group interviews, while originally intended to determine if needs had been met within the institution, had yielded similar data and were coded using the same coding structure as the individual interviews (online supplementary appendix 2.1). The interviews were analysed thematically, first through manual coding, and then using NVivo once codes were established and observed consistently across multiple data sets (interviews and focus groups).
Supplemental material
Supplemental material
Demographic analysis
Religious identities of ADRAS individual interviews n:11
Results
The predominant findings are that motivations for CP fall into four broad categories: personal values and identity; professional values and identity; and experience with death and dying. These categories are additionally influenced by a fourth category, the overarching social context of the organisation in which MAiD practice takes place. In every interview and focus group, these categories were present for all participants. There are nuances within these categories that we have broken into subthemes. Not all subthemes are reported by every participant.
Personal values and identity
‘Personal values’ are identified in the literature as important motivators for CO; however, this concept is poorly defined. In the context of this study, ‘personal values and identity’ are defined as formative features in the personal lives and histories of participants (outside of professional spheres), which influence their moral beliefs and sense of meaning and purpose. These are values and identities that are accrued across the life course, and often inform the participant’s decision to engage in their profession of choice. The following subthemes emerged in this category.
Early life experience
Some participants discussed experience with trauma and hardship early in life. This early exposure to trauma, particularly emotional trauma, helped inform their career interests and future professional pursuits. One nurse from ADRAS stated that
I knew drama from my home. Looking back, I can see what drew me. It drew me that I didn’t have to sleep, and I didn’t sleep at my house, it wasn’t safe… so it’s what I knew. I knew that high intensity life or death… and life or death, I would say that my call for psychological issues…its part of me
This narrative suggests that early experiences with trauma led to personal attributes such as emotional resilience and an interest in deep questions of life and death, which they later translated into a professional career that involves these facets. This particular nurse worked in intensive care, which has an emotionally intense atmosphere that felt familiar. This tolerance for intensity was iterated in the aforementioned Denier article as a feature experienced by nurses in MAiD care in Belgium. This suggests that early exposure to trauma and emotionally challenging situations may enable MAiD practitioners to withstand the intensity of the MAiD procedure, and may be a motivator for participation.
Social justice advocacy
Many participants in this study described exposure to situations in their lives that they deemed unjust, and a determination to rectify injustice. Most of this injustice centred around inequitable or unfair treatment, either in a clinical context (eg, end-of-life care that was inappropriate) or in the realm of social care and policy. One physician, who was also an abortion provider and former social worker, found their exposure to injustice in women’s health to be a significant motivator throughout their career. They state, ‘studying women’s issues, and then working as a social worker, I was just exposed to a lot of social justice issues.’
Exposure to injustice was typically followed by direct, clear action to counterbalance that observed injustice. Many participants cited a desire to take action following the observation of injustice in healthcare or society at large. An ADRAS social worker was raised in an environment where issues of social justice were discussed openly. They state, ‘my mother was a social worker, but the human experience has always been the thing that sort of…. I found the most compelling. I have been also really drawn to issues of injustice… from a young age.’ This social worker went on to pursue a career in children’s aid, and clinical social work where they frequently supported patients and family through challenging decisions, and confronted social inequities. This sense of a desire to advocate for vulnerable persons and populations was a frequently cited motivator for participation in MAiD practice.
Religious identity
While it could be assumed that religious identity could impact willingness to participate in MAiD, it was found that among MAiD participants this aspect of identity is nuanced and individual. There were many faiths represented in these data that may be assumed to be misaligned with MAiD practice. However, each participant for whom faith was an important part of their identity found a way to reconcile their practice with the doctrine of their community. For example, one ADRAS physician stated that
I’m Buddhist. So, the Buddhist principles that probably most inform my work relate to the fact that were all connected… That you and I are no different from the person down the street, because that brings you right to the point where its this person sitting here now, but it could be me, it could be me as someone else… Also, the capacity, I think, to face hard things with people, and just sit with them when its hard, and [explore] what we can do.
A chaplain described their interpretation of their role as a spiritual care provider through the lens of Catholicism. While they were raised Catholic, they questioned their faith during their professional formation. Eventually they developed a unique perspective, interpretation of and identity as a Catholic spiritual care provider throughout their education:
[when I did] my masters thesis, I wrote on spiritual care from a Catholic perspective, because I thought if I wrote a masters on spiritual care from the Catholic perspective I would prove to myself that I was not Catholic, and that I could go about finding what[ever] tradition I needed to be formed in, in order to be a chaplain. Well, it turns out that the Catholic form of spiritual care is to care for the other in whatever way the other needs to be cared for. So, in doing my thesis I just proved to myself that I really am a Catholic spiritual care provider.
Each participant who espoused a religious orientation had found a way to reconcile MAiD practice with their faith. This identity provided a sense of connectedness to a wider set of values that motivated their participation. Given the wide range of religious identities reported in this small sample, religious affiliation should not be presumed to preclude someone from being involved in MAiD practice.
Professional values and identity
Professional values and identity are defined, for the purpose of this paper, as the moral orientation and meaning/purpose derived through a particular professional practice. The following subthemes emerged in the interviews with participants.
Patient self-determination
Many professionals suggested in their interviews that they did not engage in MAiD practice solely because they were interested in ending suffering. Rather, their primary interests were in supporting patient autonomy and patients’ right to choose their own destinies. Patient suffering was secondary, as they wanted the patient to determine what degree of suffering was acceptable or meaningful based on their own subjective experience, and decide how that suffering could be managed. In an interview with a psychologist, they stated:
I think it just comes back to some of the core principles in psychology and that I think all of us have? I think that the patient has a right to choose and, so I know that even when we do an assessment, do treatment… the patient has a right to refuse that and we make that really clear to our patients.
Many of the professionals identified their profession as one that honours autonomy, particularly nurses and other allied health professionals, such as spiritual care and social work. They suggest that supporting a patient’s right to choose was at the core of their professional ethics, and is a principle that should be supported in all contexts, including MAiD.
Compassionate care
All participants in this study were strongly motivated to provide care that is compassionate, and honouring of a patient’s struggles. A pharmacist expressed how compassion can be integrated readily into care, and policies can be interpreted specifically in order to allow room for compassionate care. They stated:
We have a lot of rules and procedures and protocols that we follow in pharmacy and you always want to be careful not to overstep your scope…but at the same time, I realize that the rules are there because they were created to help protect the patient. As long as what I do preserves that underlying need to make sure that the patient is safe and that helps the patient in the end, sometimes some of the rules… you can justify following a different procedure, a different protocol.
Like this pharmacist, several participants expressed frustration about clinical situations where policies or systemic issues impede the provision of compassionate care. For these participants, protocols are an important way to ensure safe and high-quality care, but compassion for the suffering was a pre-eminent motivation in their professional practice and participation in MAiD.
Patient advocacy and facilitating access to care
Perhaps one of the more frequently reiterated statements across the data was participants’ self-identification as a ‘patient advocate’. Advocacy took many shapes, from advocating for better end-of-life care, or for patient autonomy, or for family involvement in care. Nurses most frequently cited ‘advocacy’ as a primary professional value. In the focus groups, the team described the role of ADRAS as a group that advocates collectively for better end-of-life care and whole-person care for patients and families. An ADRAS team nurse stated, ‘The only reason why I do this…, and the biggest reason I am a nurse, is because you can advocate for [your patients]. You make sure they get what they need.’
Experience with death and dying
‘Bad death’ as the opposite of assisted death
All participants in this study had experience with dying, either in a personal or professional context. ‘Bad death’, while subjective, was often described as a process of dying that did not honour the wishes of the patients, lacked dignity or was protracted after a long and difficult illness. ‘Bad death’ predominantly centred around the patient’s experience and perspective of dying. One physician stated:
Even in the last 30 or 40 years there has been a dramatic change in the way that people die. And where that takes place. Ontario, as a jurisdiction, has a really high number of people who die in hospital and how you get in to hospital is through the emerg [sic] [Emergency Department]. So, we see a lot of it. And I have also seen a lot of what I thought of as poor deaths, a lot of outcomes in the last hours and days that like… enough that I started to advocate the fact that as a hospital we need to do something better for these people.
Experience of traumatic dying
Many participants went beyond the typical description of bad death and instead described death that was traumatic to those who witnessed it. In this case, ‘traumatic death’ refers to the experience and perspective of the family or loved ones. Many participants had experienced the traumatic death of a loved one themselves, such as a parent, and many more had watched their loved ones endure the traumatic passing of someone else. A spiritual care worker stated that
My cousin’s father had ALS and it was brutal… and watching her intolerable suffering as she watched her father [die]…. [It was] awful. Awful. I can’t speak to how intolerable it was for her, and she’s perfectly healthy and just watching her father do that….
Assisted death as ‘Good’ death
Conversely, we must then assume that there exists a ‘good death’ that is less traumatic, or perceptibly ‘bad’ for both the patient and their family or loved ones. A nurse from ADRAS, who had a distinguished career in intensive care and had witnessed many ‘bad’ deaths, described their first experience with MAiD as follows: ‘it was amazing… it was good. I thought it was… I felt like I benefited that woman somehow, that I had a part in relieving her suffering, she got to die the way she wanted…’
It is certainly unique to describe a patient’s dying and the experience of bearing witness to a death as ‘amazing’; however, this sentiment was felt among many participants who had been in certain areas such as emergency department and intensive care unit for several years and had witnessed the worst forms of dying. As such, MAiD participation acted as a positive counterbalance to the negative experiences of dying in their everyday professional work.
Organisational context
Leadership support
The organisational context in which MAiD is practised was identified as having a significant influence on the willingness of professionals to participate. Given the taboo nature of the practice, and the risks associated with it, participants in our study cited a need for support and protection from the institution. One of the ADRAS directors described how soliciting leadership support for the practice early in the development of the MAiD programme was crucial to recruitment of willing MAiD providers:
Two years ago, we went before the board, not to ask permission but to develop their consciousness around the philosophy of care that we were trying to promote in doing this work. And they just stepped in with us. They stepped in beside us and said ‘yes of course this aligns with our values!’.
Participants described the importance of knowing that leaders at the highest level, including the board of directors, were supporting them in developing a new approach to end-of-life care as an important factor in their willingness to participate in MAiD.
Structural support
The ADRAS team has a unique team structure that is multidisciplinary and highly collaborative. Each assessment is done as a team of two (one physician or nurse practitioner and one interprofessional team member), and there are designated MAiD coordinators to facilitate system navigation, and guidelines/policies designed to support ADRAS members as they move through the assessment and provision process. Participants describe a great deal of pride in the structure of the MAiD programme at HHS. One senior leader stated, ‘my sense is that the model we have is probably one of the most sophisticated models in the country, in terms of how care gets delivered and the fact that it is truly an interdisciplinary team.’ Specifically, the structures developed by the MAiD programme that participants found most supportive included: interprofessional and interdisciplinary models of care delivery, a commitment to a whole-person model of care and continuous support from leaders within the institution (ADRAS focus group 1). This level of pride, and confidence, in the programme at an institutional level creates an atmosphere of respect and trust in MAiD practice within this institution, which removes a potential barrier to participation in MAiD.
Peer support
A nurse on ADRAS discusses how the peer support facilitated through the ADRAS team contributes to her resilience and continued participation in MAiD practice:
I was worried, when this team started, that it would be a very emotionally difficult [practice] and lead to a lot of burnout and distress on my part. And that really hasn’t happened at all. In fact, this team is really a counterpoint to the other work I do in the Intensive Care Unit. And that actually tends to be the work that burns me out and gives me a lot of moral distress. And this team…I think it’s partly because of the support structures and the team processes and the fact that we debrief and that I feel really supported…this work is has not led to any feelings of burnout or distress on my part.
The peer support processes built into the ADRAS team structure, including: peer review of cases, attending assessments/provisions in teams of two, providing space for reflective practice before and after MAiD provision, are clearly significant in the prevention of burnout and fatigue from emotionally complex cases, and enable continued participation in the practice.
Discussion
The CP model
In summary, four factors emerged as important motivators for CP in MAiD. The first, organisational context, refers to the structural and social supports that exist within the organisation that may facilitate a supportive environment in which a taboo practice might occur. The second, professional values and experience, includes the goals and duties or meaning/purpose of their specific profession and how those values may align with the taboo practice. The third, personal values and experience, denotes the experiences accrued across a lifetime that may facilitate a personal world view that makes the taboo practice permissible morally. Finally, experience with death and dying is essential to MAiD practice, as a ‘bad’ or ‘traumatic’ death was frequently cited as motivation for participating in the provision of MAiD deaths, which are perceived as conversely a ‘good’ way to die.
Based on the themes that emerged in the data, a model was constructed to illustrate the inter-relatedness of professional values and identity, personal values and identity and experience with dying. These themes are influenced by the organisational/social context in which this practice takes place. The individual’s predisposition towards MAiD is situated at the convergence of these themes and context. We propose that this model best describes the social, professional and experiential realms that influence CP in MAiD, and potentially other areas of taboo medicine. See figure 1.
Conscientious participant model. MAiD, medical assistance in dying.
Based on our study, the strongest predictor of CP is professional values and identity, followed closely by experiences with death. Organisational context was a significant facilitator in terms of motivating engagement, while personal values and identity were less strong of a predictor. Interestingly, religious identity was not a barrier for these participants, given that the majority identified with a faith tradition. No notable variability was found among responses across a wide range of health professionals and backgrounds participating in this study; thus, these themes may be relevant to CP across profession groups.
Application and relevance of the CP model
This model of CP in taboo practice can have a diversity of applications, beyond the context of MAiD. Specifically, this model could support values clarification and reflective practice, when a professional is deciding whether to participate in any morally complex practice, including: reproductive medicine, research, disaster aid, and more. The sphere of ‘experience with death and dying’ would simply need to be altered to be relevant to the specific practice in question. For example, when discussing an issue of reproductive health and abortion, this theme could be amended to ‘experience with pregnancy’.
This model could also be used in group settings to facilitate reflection with a variety of professionals from across the moral spectrum. The themes described apply to CO and CP professionals, thus this model could be a tool to bring people together to discuss the factors that inform their motivations and how to support one another in the context of a morally diverse workforce like a hospital. This has the potential to facilitate more inclusive dialogue, recognising that each factor in this model is fluid and ever evolving based on changing personal and professional experiences over time.
The findings of this research could help better define and understand the claims of CPs and COs. CO remains poorly defined, with few requirements in terms of justifying or expressing the root of the objection. This model may provide the language and framing necessary to describe the source of an objection.
Finally, this matrix could be used for the purposes of recruiting participants to a taboo medical practice like MAiD, helping professionals discern if this is an appropriate practice for them and how to make it sustainable in their unique personal and organisational contexts.
Key findings and recommendations
There are several key findings and recommendations that emerged from this research as detailed in table 3.
Predictors of CP and how to facilitate CP among healthcare providers
Study limitations
This was a small, local study, specific to one institution in Ontario in the inaugural year of MAiD in Canada. One of the most pertinent challenges when attempting to recruit participants to this study was the sampling method. Because MAiD was so divisive and controversial at the outset, a sampling method that began with active supporters and advocates for the procedure may not include those with more moderate opinions. As a result, this study recruited and ultimately focused solely on ‘early adopters’, who may or may not be representative of CPs once a practice like MAiD is well established.
Areas of potential ongoing research
More research is needed involving a larger pool of participants to explore the complex interplay of professional and personal identity, organisational factors and clinical experiences as potential influencers of MAiD participation. Further investigation in other institutional and organisational locations is required in order to create a more generalisable set of criteria for CP in other clinical practices, and to determine if the model applies equally to COs and CPs.
Conclusions
Through this research we have developed an evidence-informed model of CP, derived not theoretically, but from the narratives of those who self-identify as CPs in the taboo practice of MAiD. These narratives describe CP as a complex decision, and one that is dynamic over time. Our participants tell us that there are four key motivators for CP in MAiD: the organisational context must be supportive; their professional values and identity must align with the practice; their personal story and experiences must intersect with the practice; and experiences with death and dying, particularly ‘bad deaths’, are very influential.
As there is currently no literature specifically detailing the complexities of CP in MAiD practice, this work provides a novel contribution to the bioethics literature. This article offers a significant counterbalance to the historic focus in the bioethics and medical literature with barriers, challenges and CO to MAiD practice. It also refutes the predominantly negative characterisation of CP, illustrated in work by Curry et al.10 Instead, this model frames providers of MAiD as patient advocates and compassionate professionals, with deep personal values that are expressed through engagement in this controversial area of practice.
After MAiD became legally accessible to Canadians in 2016, it became clear that demand for this clinical service would increase rapidly. This circumstance required healthcare providers to identify their position on this issue, and for hospitals and other institutions to recruit potential MAiD providers to facilitate access to this new form of end-of-life care. Understanding what motivates CO, and what underpins CP in a taboo practice like MAiD, can support the development of structures, processes and recruitment strategies to support sustainable access to services. This is significant, as resourcing of this service, and creating resilient care teams, is essential to ensuring that MAiD remains accessible to patients. If healthcare organisations are able to create opportunities for reflective practice, identify potential MAiD providers and create the right conditions for their participation, this enables patients to express their autonomy while ensuring care providers remain resilient and engaged in the provision of taboo medicine.
Footnotes
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval This research was approved by the Hamilton Integrated Research Ethics Board (HIREB).
Provenance and peer review Not commissioned; externally peer reviewed.
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