You are on page 1of 6

Original research

J Med Ethics: first published as 10.1136/medethics-2017-104339 on 30 October 2018. Downloaded from http://jme.bmj.com/ on 1 November 2018 by guest. Protected by copyright.
Of dilemmas and tensions: a qualitative study of
palliative care physicians’ positions regarding
voluntary active euthanasia in Quebec, Canada
Emmanuelle Bélanger,1 Anna Towers,2 David Kenneth Wright,3 Yuexi Chen,4
Golda Tradounsky,5 Mary Ellen Macdonald6

►► Additional material is Abstract and therefore unconstitutional.3 Together, these


published online only. To view Objectives  In 2015, the Province of Quebec, Canada two legal processes resulted in a legal framework
please visit the journal online
(http://d​ x.​doi.o​ rg/​10.​1136/​ passed a law that allowed voluntary active euthanasia for deliberately hastened death (ie, ‘medical aid in
medethics-​2017-​104339). (VAE). Palliative care stakeholders in Canada have dying’) in Quebec and Canada. The Quebec legis-
been largely opposed to euthanasia, yet there is little lation is particular because it explicitly confers to
1
Center for Gerontology research about their views. The research question guiding all citizens a positive right to receive a deliberately
and Healthcare Research, this study was the following: How do palliative care hastened death, assuming they qualify for and wish
Department of Health Services,
Policy and Practice, School of physicians in Quebec position themselves regarding to receive this intervention: ‘Every person whose
Public Health, Brown University, the practice of VAE in the context of the new provincial condition requires it has the right to receive end-of-
Providence, Rhode Island, USA legislation? life care’, where ‘end-of-life care means palliative
2
Department of Oncology, Methods  We used interpretive description, an inductive care provided to end-of-life patients and medical
McGill University, Montreal,
methodology to answer research questions about aid in dying’. ‘Medical aid in dying’, as it is referred
Quebec, Canada
3
School of Nursing, University of clinical practice. A total of 18 palliative care physicians to in the Quebec legislation,2 is consistent with
Ottawa, Ottawa, Canada participated in semistructured interviews at two voluntary active euthanasia (VAE) as it is known in
4
Palliative Care McGill, McGill university-affiliated hospitals in Quebec. the international literature. For clarity, VAE will be
University Montreal, Montreal, Results  Participants positioned themselves in
Quebec, Canada
used throughout this paper.
5
Department of Family Medicine, opposition to euthanasia. Their justifications were framed Palliative care is care that promotes quality of
McGill University, Montreal, within their professional commitment to not hasten life for patients and their families when facing a
Quebec, Canada death, which sat in tension with the value of patients’ life-threatening illness through the relief of phys-
6
Faculty of Dentistry, McGill autonomy to choose how to die. Participants described ical, psychosocial and spiritual suffering. The inclu-
University, Montreal, Quebec,
VAE as unacceptable if it impeded opportunities to sion of VAE as an end-of-life care option contradicts
Canada
evaluate and alleviate suffering. Further, they contested the ethos of palliative care philosophy, at least
Correspondence to government rhetoric that positioned VAE as a way insofar as palliative care neither hastens death or
Dr Emmanuelle Bélanger, Center to improve end-of-life care. Participants felt that VAE prolongs life.4 Observation of advocacy efforts by
for Gerontology and Healthcare would diminish the potential of palliative care to relieve the Quebec palliative care community during the
Research, Department of Health suffering. Dilemmas were apparent in their narratives,
Services, Policy and Practice legislative consultations that led to the legalisation
about reconciling respect for patient autonomy of VAE provides insight into its normative stance
School of Public Health, Brown
University, Providence, RI with broader palliative care values, and the value of on this practice. For example, in 2014, the Cana-
02912, USA; accompanying and not abandoning patients who make dian Society of Palliative Care Physicians and the
e​ mmanuelle_​belanger@​brown.​ requests for VAE while being committed to neither
edu
Quebec Palliative Care Network expressed concern
prolonging nor hastening death. about the blurring of boundaries between palliative
Received 21 April 2017 Conclusions  This study provides insight into nuanced care and medical aid in dying in an early draft of the
Revised 22 July 2018 positions of experienced palliative care physicians in law. The palliative care community was successful
Accepted 8 October 2018 Quebec and confirms expected tensions between an in advocating that the definitions of VAE and of
important stakeholder and the practice of VAE as guided palliative care be completely separated in the final
by the new legislation. version. They were also successful in persuading
the government to exempt free-standing residen-
tial palliative care facilities from having to provide
Introduction VAE to patients who would request and otherwise
In December 2015, the Canadian Province of qualify for this option. Hospital-based palliative
Quebec enacted legislation that added euthanasia as care units, however, were not exempt.2
a legal option among end-of-life interventions.1 Law Several articles have addressed the attitudes of
© Author(s) (or their physicians towards euthanasia, but few have focused
employer(s)) 2018. No 2 permits the deliberate injection of lethal medica-
commercial re-use. See rights tion by a physician when a request has been made on physicians with palliative care expertise.5 6 For
and permissions. Published by a terminally ill, cognitively apt adult patient, and instance, in a survey of 914 Belgian physicians,
by BMJ. has been approved by two independent physicians.2 90% of respondents agreed that ‘the administra-
To cite: Bélanger E, Quebec was the first and only Canadian province to tion of life-ending drugs at the explicit request of
Towers A, Wright DK, et al. pass such legislation, although a parallel process led a patient is acceptable for patients with a terminal
J Med Ethics Epub ahead of the Canadian government to develop a federal law disease with extreme uncontrollable pain or other
print: [please include Day in compliance with a 2015 Supreme Court Ruling, uncontrollable suffering’ (p583), and there was no
Month Year]. doi:10.1136/
medethics-2017-104339 which found existing prohibitions on assisted death relationship between agreement with this state-
to be violations of fundamental rights and freedoms, ment and self-reporting any palliative care training
Bélanger E, et al. J Med Ethics 2018;0:1–6. doi:10.1136/medethics-2017-104339    1
Original research

J Med Ethics: first published as 10.1136/medethics-2017-104339 on 30 October 2018. Downloaded from http://jme.bmj.com/ on 1 November 2018 by guest. Protected by copyright.
in either basic training or continuing education.5 Conversely, a mainly been examined in the context of rhetorical analysis. We
survey of 3299 American oncologists suggests that those who explored the positions of palliative care physicians and focused
feel comfortable providing end-of-life care are less likely to on the dilemmas within their narratives, in order to consider the
report having performed euthanasia or assisted suicide.7 Zenz multiple ways in which their own perceptions of moral integrity
et al also found that a majority of palliative care professionals in are challenged by the recent legislative changes. The assumption
Germany would refuse to perform euthanasia.8 is not that participants might be disingenuous or confused in
Research in the USA, where a number of states allow physi- positioning themselves, rather that they are negotiating poten-
cian-assisted suicide (PAS) but not VAE, also highlights the tially conflicting identities and expectations.
challenges that palliative care providers have faced when imple-
menting different state laws. A study of hospice policies regarding Data generation and analysis
PAS in the states of Oregon and Washington revealed that Data sources consisted of semistructured interviews. A resi-
although hospices do not participate directly in hastened deaths, dent in palliative care (YC) and a palliative care physician and
there were inconsistencies and dilemmas regarding their role in researcher (AT) conducted the interviews throughout 2015.
providing information, in participating in the decision-making Interviews were audio-recorded with participants’ consent and
process and in accompanying patients.9 10 Finally, according to were transcribed verbatim. During the field research period,
a qualitative study from Switzerland, where requests for assisted the Quebec Parliament adopted Law 2, which added VAE as an
suicide are managed by right-to-die societies in parallel to the end-of-life care option, and the Supreme Court of Canada ruled
healthcare system, palliative care providers reported advising that existing prohibitions on both PAS and VAE were uncon-
patients who made requests, but most refused to write lethal stitutional.2 3 Some participants were therefore approached
prescriptions.11 The authors report that participants struggled for follow-up interviews to update their positions and react to
to reconcile their commitment to palliative care principles with current changes. The interview guide is provided in the online
patients’ wishes to exercise their autonomy.11 supplementary appendix. Analysis was led by a health services
Much has been written in the media about the opposition of researcher with specific expertise in qualitative research (EB),
key palliative care actors to euthanasia in Quebec,12 but there without affiliation with palliative care organisations. Transcrip-
remains little academic research on these views. In a study about tions were analysed in several iterations by the first author and
palliative care physicians’ perspectives about specific end-of-life following discussions with the entire research team. Analysis
care practices in Quebec, VAE was viewed as falling outside of was conducted in accordance with interpretive description and
what should be considered the scope of palliative care prac- also guided by the theoretical framework, as we examined the
tice.13 Policy-makers and the public, however, are surprised by emerging themes for contradictions and dilemmas, and consid-
the opposition of palliative care providers towards VAE.14 This ered what these might reveal about the ideological commitments
opposition deserves to be explored further, especially given that and moral positionings of our participants. The NVivo qualitative
it will have implications for the implementation of the provincial analysis software was used to help manage the data. Data collec-
legislation in practice. tion and analysis occurred concurrently in an iterative process,
In this study, we aimed to capture the perspectives of a key to enhance understanding and to permit deeper probing into
stakeholder group as the law in Quebec was changing. The the issues at hand. Thematic categories and dilemmas regarding
research question guiding this investigation was the following: these categories were found through a consensual process of
How do palliative care physicians in Quebec position themselves discussing excerpts involving all the authors. The researchers
regarding the practice of VAE in the context of the new provin- met regularly to ensure a uniform data analysis process and to
cial legislation? An indepth understanding of the moral perspec- confirm the emerging thematic categories. Participants signed
tives of palliative care physicians about euthanasia is essential to informed consent forms guaranteeing their confidentiality.
move forward in the planning and delivery of ethical end-of-life
care in the new legislative context. Such movement will need
to account for the challenges that palliative care physicians are Results
likely to face to their moral integrity when confronted with Eighteen palliative care physicians participated in the study; they
requests for euthanasia. represent the majority of the palliative care physicians on staff
at the palliative care units of two public hospitals located in an
urban area of Quebec. All participants were full-time palliative
Theoretical framework and methodology care physicians, and like most palliative care providers in Canada
In this study, the methodology of interpretive description was the majority of them (16 out of 18) were family physicians. As
selected to ensure a thorough depiction of the positions of palli- expected, all participants expressed discomfort with euthanasia
ative care physicians. Interpretive description is an inductive as an aspect of end-of-life care. All but one denied the influence
analytical methodology that can provide indepth descriptions of religious or political positions in shaping their views. At a
and interpretation of data to answer research questions about surface level, their shared discomfort is consistent with position
clinical practice.15 This methodology is being used increasingly statements from palliative care associations. Further, though,
in health science research because it is responsive to the expe- our participants felt that the richness of the issue was lost when
rience-based questions of interest to practice-based disciplines. the debate was framed in binary terms. Ultimately, participants’
As we explored the data, however, it became clear that some normative stances about VAE cannot be reduced to simply being
of the positions of palliative care physicians on this topic were ‘for’ or ‘against’. As one participant said, “There is this attitude
contradictory, and that a theoretical framework would help from the palliative care community that, you know, there’s no
us unpack these findings further. Therefore, we borrowed the discussion, we know how to take care of patients, and, you know,
theoretical notion of ideological dilemmas from the field of [those performing VAE] are killing patients. So I don’t think it’s
social psychology.16 Ideological dilemmas refer to the tensions as black and white as that’ (participant 7). Our findings suggest
and contradictions that occur between peoples’ values and that there were recurrent dilemmas in the ways that palliative
commitments, revealed in the way they talk. This concept has care physicians positioned themselves on this issue, as members
2 Bélanger E, et al. J Med Ethics 2018;0:1–6. doi:10.1136/medethics-2017-104339
Original research

J Med Ethics: first published as 10.1136/medethics-2017-104339 on 30 October 2018. Downloaded from http://jme.bmj.com/ on 1 November 2018 by guest. Protected by copyright.
of a professional community of palliative care and as members of for the patient, because you always wonder like, maybe we could’ve
Quebec society. As we explored the justifications that palliative done something, maybe they would have stopped asking for that. I
care physicians gave to explain their position against the new will feel like the patient is not getting the best care. (participant 8)
medical aid in dying law, we also found areas of uncertainty and
ambiguity. In the following excerpt, the same participant defends the
contrary position of accepting and understanding a patient’s
Professional roles versus a person’s right to choose choice. “I wouldn’t choose against the patient. […] I’d feel for
As healthcare providers pursue their training, they adopt the the patient, they are choosing it because they are suffering, and
norms, values and behaviours of the professional groups they they don’t necessarily want to choose it but they are choosing
aspire to belong to, and integrate them with their background it because they are suffering and they believe that that will help
and pre-existing personal identities and experiences. Controver- them suffer less” (participant 8). There was an inherent tension
sial issues such as VAE raise the challenge of personal conscience between respect for autonomy and what they perceived to be the
and of potentially conflicting positions between personal time required to provide good-quality palliative care.
and professional positions. Participants reported not having a
problem with individuals choosing euthanasia for themselves, Concern that VAE legislation is a policy response to poor-
thereby making their own decisions: quality end-of-life care
Participants were concerned that VAE legislation was, at least
I feel that it’s an extremely personal choice, I feel that part of some partly, developed in order to fix a broken healthcare system: that
of the resistance at times can be related to [the fact that] that this is, it was being offered instead of working to improve the quality
is something new. Would I practice euthanasia? No, I would not of palliation and symptom control. In the excerpt below, the
be able to do it. […] I think it’s a very dangerous thing. I think on desire for a hastened death is seen to make sense when embedded
an individual level, it might make sense, but I think on a societal in a patient’s desire for control; however, it becomes problem-
level, I think it sends a … message. I worry about what it sends [as a atic when it is a response to poor access to palliative care.
message]. But do I have the arrogance to think that someone should
not have something that they want? (participant 3) I think that as an individual, I would feel a certain level of comfort
in knowing that I had that degree of decision or control of my life.
The arguments that participants used to justify a position […] I think that professionally I’m very uncomfortable with it, as an
against euthanasia were framed within their professional roles, option in the current state of the health care system in Canada, as I
which could then contrast with their respect for patients’ feel that many individuals within the greater society in Canada do
autonomy to choose end-of-life options. “I can see that it’s a not have the ability to make fully autonomous choices. I think there
are many external factors that affect people and even as simply as
very personal view, and there is not a single way of seeing things.
the access to palliative care. (participant 15)
Therefore when you ask me if I’m in favor or not of the Bill, it’s
very hard to answer. Obviously based on my own beliefs, I don’t
Participants acknowledged that some patients might indi-
want to use that right, but I cannot say that it’s wrong for other
vidually want euthanasia when faced with poor health services
people to use that right” (participant 6). Overall, their concern
and uncontrolled symptoms; however, they felt that this was
for the integrity of the palliative care profession prevailed as they
not a situation that should be condoned socially and profes-
discussed their own positions on VAE. As will be explored below,
sionally. Participants asserted that they could not condone VAE
tension became more prominent when the practice of euthanasia
as a policy response to a healthcare system that provides poor
explicitly conflicted with their professional roles.
end-of-life care. As professionals closely involved with accompa-
nying patients at the end of life, they suggested that expanding
Euthanasia as impeding the evaluation of suffering
access to palliative care was an important prerequisite and they
The analysis revealed a tension between the need to explore
did not believe that Law 2 would improve access despite explicit
patient suffering in order to alleviate it and the need to respect
engagement to do so in the provincial legislation.
patient choices even when shaped by the extent of that suffering.
Participants reported occasionally encountering demands for a
Potential of palliative care to provide peaceful deaths
hastened death in their practice and interpreting those demands
A contention that there was a lack of knowledge about palliative
as a plea to explore the patient’s suffering. There was concern
care among both the general public and other healthcare profes-
that once VAE would be legal, palliative care physicians would
sionals was evident throughout the interviews. Participants felt
no longer be able to explore requests for death in as much
there to be a need for better end-of-life care in our society and
depth. There was concern that with euthanasia as an option,
felt themselves best placed to address this need. As such, they
their patients would be less willing to allow them the time and
commonly mentioned the lack of knowledge about palliative
the engagement required to address suffering adequately and
care and the fear of dying that is present in the general public.
explore other care options. This concern revolved around the
implementation of the law, which guarantees rapid access to In a sense, I do understand why some people are supporting this
euthanasia after a patient request. Taking the time to explore and Bill. It’s because people want to have control over their lives, and
palliate suffering was presented as a fundamental component of so control over their death as well. That may stem from their fear
palliative care practice: of losing that control at end of life, suffering and not being able to
make decisions for themselves. I do understand where they come
When someone asks for hastened death, I spend time with from. But on the other hand, I do think there are ways we can
them, I try to explore the question, I try to explore existential, work around that, I think people need to be educated about what
physical, emotional and psychological things, we all [palliative care palliative care is. A lot of people may not be aware of what we
physicians] put in a lot of effort in trying to figure it out. I think if do. In a sense, they see it as black and white. Either I live a happy
euthanasia is available, I’m not sure if that person really wants me life, healthy no suffering; if I suffer, then I need to terminate my
to spend that time. It may actually be easier in a sense, I will have suffering myself, instead of having a team of professionals whose
less work but I’m not sure that it will be, you know, I will feel bad job is to help relieve that suffering. (participant 5)

Bélanger E, et al. J Med Ethics 2018;0:1–6. doi:10.1136/medethics-2017-104339 3


Original research

J Med Ethics: first published as 10.1136/medethics-2017-104339 on 30 October 2018. Downloaded from http://jme.bmj.com/ on 1 November 2018 by guest. Protected by copyright.
The notion that causing patients’ death directly is not necessary Discussion
to relieve suffering was also prevalent in the interviews. “People This study provides insight into the nuanced positions of expe-
who actually deal with patients who are dying are opposed to rienced palliative care physicians in Quebec during the adoption
the Bill. Why? Because we don’t see it as a great need. We are of a provincial legislation about VAE. The integration of VAE
able to treat patients and we’re able to alleviate their suffering. and PAS in palliative care practice remains a highly contentious
And for the most part, do so without even having to sedate them topic.14 17 In this study, in addition to a concern for patients’ right
in a continuous manner” (participant 2). Participants felt that to choose, the position that prevailed was one of professionals
the public and policy-makers were not aware of the potential with a commitment to improving the state of end-of-life care and
of palliative care to relieve suffering and help patients attain to promoting awareness about the potential of palliative care to
a peaceful death. There was an understanding of the societal provide adequate symptom control and maximise opportunity
need that came from this lack of knowledge about palliative for valuable end-of-life moments. Few studies have focused on
care and of the distress that came with it, even among health the attitudes of palliative care providers and how they position
professionals. The fear of dying and of suffering is a powerful themselves beyond the official position of professional associa-
force that has to be addressed with public policies. “Everyone’s tions. We identified dilemmas that appeared when justifying an
afraid of dying. Everyone’s afraid of suffering. So I think to put opposition to VAE, which were framed within professional roles
together a Bill that would sort of meet the needs of the popula- and contrasted with positions that emphasised personal prefer-
tion, I think makes sense” (participant 2). However, even when ences, and patients’ autonomy and right to choose. In our data,
acknowledging the challenge of alleviating pain and suffering, participants acknowledge that positions are deeply personal, but
participants emphasised that there is already an ethically accept- justified their opposition as part of their professional roles and
able treatment, palliative sedation, that can be used in the rare palliative care values. Participating physicians did not explicitly
cases where suffering endured: “Now, statistically speaking, are align with religious or politically conservative agendas, contrary
there some people who persist in asking for it? Will there be to a Belgian study.5 Similarly, Lavoie et al did not find religious
some people I can’t manage their symptoms so they will persist affiliation to be associated with the intention to practise eutha-
in asking? For sure, but it hasn’t happened really that often and nasia among Quebec physicians.18
[…] palliative sedation was an option” (participant 8). Participants perceived that truncating the dying process
undermines the value of end-of-life experiences and that desire
Reconciling accompaniment without participation in for hastened deaths implies a lack of awareness of the potential
hastening death of palliative care to provide peaceful deaths. Their perspectives
There was a general agreement among participants that palli- resonate with the position of the International Association for
ative care should neither hasten nor delay death, and should Hospice and Palliative Care and the European Association for
therefore remain separate from the implementation of the new Palliative Care, both of which recommend that requests for a
provincial legislation. Further, there was agreement that pallia- hastened death should be addressed as part of palliative care
tive care physicians should not be involved because participants practice through interventions that can help relieve suffering,
felt it would threaten the therapeutic relationship and reduce such as palliative sedation.19 20 The advocacy notion that eutha-
trust: “I have great concerns as to how that makes a population nasia would not be necessary if access to palliative care was
feel that they can trust the health care system” (participant 3). adequate was identified in a previous discourse analysis of Cana-
However, participants were also aware that as physicians, they dian physicians’ positions in the print media.12 Although often
have expertise which could help ensure that euthanasia would not explicitly stated in official position statements, this theme
be carried out without inducing more suffering than necessary. implies that palliative care is able to create value at the end of life.
A major dilemma for the participants appeared to be the need to Dying is presented as a ‘natural’ process that should be neither
remain true to the definition of palliative care, not abandoning hastened nor delayed. The palliative care movement seeks to
patients and continuing to care for them even if they requested restore meaning and dignity at the end of life.21 This movement
euthanasia. For some, this meant removing VAE patients from has historically positioned itself in opposition to assisted death,
the palliative care units; for others, this was problematic: “I although this positioning is not without controversy. Bernheim
would question the not-doing-it-on-a-palliative-care-unit, if the and Raus,22 for example, argue that criticisms of the Belgian
patient has been trying palliative care and it hasn’t, to their mind, model of end-of-life care (which integrates both euthanasia and
been successful. Or, at this point, they want to then make use of palliative care) fail to consider that ‘there is a plurality of reason-
euthanasia; it seems a bit harsh to me to then somehow transfer able and defensible views on the ethical acceptability of eutha-
them off of the palliative care unit to be killed, you know, some- nasia’ (p493). For these authors, respecting patient autonomy
where else” (participant 4). The question of who should be in in a way that makes room to consider euthanasia as an ethical
charge of providing VAE was a persistent one, one which few option in some cases is a more authentic way of enacting empathy
participants had an answer to, beyond “not us, palliative care (a core palliative care value) than rigid adherence to historical or
physicians”: doctrinal positions of outright moral rejection.
The work of Quebec’s Commission on Dying with Dignity that
I don’t know that I have that expertise and I don’t know that took place in 2010–2011 was central to the development of the
I feel that I’d be capable and competent to do that really. That medical aid in dying legislation in the province. This Commis-
being said, I’m torn, because who is it going to be? Is it going to be sion explicitly concluded that end-of-life care is inadequate in
some person they are going to hire that’s going to be a euthanasia
the province, and therefore euthanasia should be provided as an
specialist? Is it going to be like a pharmacist-driven thing? Who else
would be the best advocate to do it? So at the same time, I’m so
option for patients who are inevitably suffering as a result.23 In
utterly protective of humanity and patients, especially the ones that our study, participants described euthanasia as an inappropriate
have no mandate, that have nobody, I worry about who would be response to poor-quality end-of-life care, one that was also
that identified person. Who would be that competent person? So incompatible with their professional role as palliative care physi-
the answer is, wow, I don’t know. (participant 3) cians. This point again aligns with associations that advocate
4 Bélanger E, et al. J Med Ethics 2018;0:1–6. doi:10.1136/medethics-2017-104339
Original research

J Med Ethics: first published as 10.1136/medethics-2017-104339 on 30 October 2018. Downloaded from http://jme.bmj.com/ on 1 November 2018 by guest. Protected by copyright.
against the decriminalisation of physician-assisted death in the that foundational ethical principles of palliative care and physi-
absence of universal access to palliative care.19 20 The main cian-assisted death appear to be at odds for a majority of profes-
ethical issues that have been raised in previous work surrounding sional palliative care associations, some argue that the practical
the provision of physician-assisted deaths in the context of insuf- implications of decriminalisation for palliative care services
ficient access to palliative care services concern the absence of should have been taken into account explicitly as part of legisla-
meaningful choice, the risk of health inequity regarding access tion to minimise conflict in implementation.17 At the same time,
to care and the development of VAE as a potential barrier to other critics observe that continued and unequivocal rejection of
the development of palliative care.24 Yet emerging evidence indi- euthanasia by the palliative care community will only result in
cates that the decriminalisation of euthanasia has not impeded the marginalisation of palliative care within euthanasia-permis-
the development of palliative care services in Benelux coun- sive jurisdictions.22
tries.25 In cases reported in the Dutch-speaking part of Belgium, Our participants perceived tensions between their personal
there appears to be an increase in the percentage of euthanasia and professional identities, which undoubtedly will have impli-
cases where palliative care was consulted, from 34.0% in 2003 cations for their self-evaluations of moral integrity. Exposing
to 42.6% in 2013.26 However, a unique feature of the Belgian the nuanced views of stakeholders who are heavily involved
context may be synergy between the euthanasia and the palli- in providing end-of-life care is meant to contribute to further
ative care movements, something that has not been observed ethical analysis and debate on this topic, especially in the light
elsewhere.27 A remarkable feature of the situation in Quebec is of recent considerations by Quebec and Canadian governments
the tension inherent in Law 2, which includes VAE as an option about potentially broadening access to medical aid in dying to
on the continuum of medical care at the end of life, despite the cognitively impaired adults through advance directives. The end
opposition of palliative care providers who provide a large part of life is often depicted as unavoidably painful and undignified
of this care.14 in public debate, with what appears to be limited awareness of
The findings of our study speak directly to ongoing debates palliative care practice. The role of palliative care providers in
regarding the integration of euthanasia into modern notions of the implementation of physician-assisted deaths remains unre-
ethical end-of-life care, specifically with regard to the role that solved. Regardless of whether or not the law is expanded over
palliative care providers ought to play in the care of patients the coming years, there is no doubt that more research is needed
requesting and/or receiving euthanasia. In this paper, we high- to assess the impact of this provincial legislation in the context
lighted dilemmas apparent in participants’ narratives about of the Quebec healthcare system. This impact will undoubtedly
reconciling respect for patients’ right to choose their own deaths be shaped by the degree to which palliative care providers are
with palliative care values, and about accompanying patients involved, or not, in the care of these patients moving forward.
who make requests for euthanasia while remaining committed This study has certain limitations. First, participants were
to neither prolonging nor hastening death. Our findings show interviewed by either a palliative care resident or a palliative care
that palliative care providers are sensitive to a host of ethical physician, which might have triggered social desirability and
issues at play in the care of patients seeking euthanasia, including affected responses. However, questions were open-ended and
(but not limited to) the limited access to palliative care that many confidentiality was guaranteed; it is reasonable to assume that
patients face, and the time that it takes to provide adequate we obtained authentic responses. In addition, an independent
end-of-life care to people who are suffering, as well as the value health services researcher (EB) led the analysis with the input
of non-abandonment for ethical therapeutic relationships. Lack of team members who have a diversity of viewpoints, including
of time to properly evaluate suffering and provide the stan- as palliative care providers (nursing, medicine) and researchers
dard of care that palliative care providers feel patients need with training in social science and bioethical approaches to
and deserve puts such providers at risk of experiencing moral health research. The presence of dilemmas and of nuanced
distress.28 Regarding non-abandonment, a similar concern was answers conveying uncertainty also suggests that participants
also documented among Swiss palliative care physicians, who could adopt any position. Another limitation is that the physi-
found it difficult to accompany patients in decision-making cians involved in this study take care primarily of patients with
about assisted suicide while honouring palliative care principles cancer. While this is transferable to the practice of other pallia-
that do not support this practice.11 Interestingly, the theme of tive care providers in the province, the views of physicians who
non-abandonment figures among the reasons that US physicians are not primarily palliative care providers but who still provide
provide for supporting the decriminalisation of euthanasia.29 palliative care to patients who have other diseases might be
Research in the Netherlands has shown that tension between different. For instance, patients with neurodegenerative diseases
what physicians consider to be a good death and patients’ views such as amyotrophic lateral sclerosis have contributed signifi-
and preferences can have significant implications for the imple- cantly to the development of current euthanasia legislation in
mentation of physician-assisted death.30 It is worth highlighting Canada and largely die under the care of neurologists unless they
that the majority of arguments mobilised by participants were are transferred to palliative care units. Finally, all participants
also identified in a review about the moral issues surrounding practised palliative medicine in one urban area of Quebec, and
euthanasia as presented in palliative care journals.31 Arguments early evidence of implementation practices suggests that there
about dying as being a part of life, euthanasia diverting atten- may be disparities in access to VAE across regions, suggesting
tion from good palliative care, as well as the non-necessity argu- that clinicians working in other regions might have different
ment when receiving good palliative care were encountered in opinions; conducting similar research in different regions would
the data. The dilemmas documented further shed light on the be informative.
challenges involved in upholding these principles while also In conclusion, this study documented the dilemmas and
respecting autonomy, being compassionate and acknowledging tensions that palliative care providers face when discussing the
the fallibility of palliative care.31 Less attention was paid to the inclusion of euthanasia as an end-of-life care option in the Prov-
slippery slope argument or the dehumanisation that can result ince of Quebec. These positions highlighted some of the struggles
from a culture of death, perhaps because participants were not inherent in reconciling commitments to values—such as respect
envisioning VAE as part of their palliative care practice. Given for autonomy—with broader identities that are shaped within a
Bélanger E, et al. J Med Ethics 2018;0:1–6. doi:10.1136/medethics-2017-104339 5
Original research

J Med Ethics: first published as 10.1136/medethics-2017-104339 on 30 October 2018. Downloaded from http://jme.bmj.com/ on 1 November 2018 by guest. Protected by copyright.
disciplinary context, one that opposes hastened death. Insofar 10 Campbell CS, Cox JC. Hospice-assisted death? A study of Oregon hospices on death
with dignity. Am J Hosp Palliat Care 2012;29:227–35.
as palliative care providers are a major stakeholder of end-of-
11 Gamondi C, Borasio GD, Oliver P, et al. Responses to assisted suicide requests:
life care in Quebec, we need to further explore how the policy an interview study with Swiss palliative care physicians. BMJ Support Palliat Care
allowing euthanasia is shaping the practice of palliative care and 2017:bmjspcare-2016-001291.
the evolving role of palliative care providers more generally 12 Wright DK, Fishman JR, Karsoho H, et al. Physicians and euthanasia: a Canadian
print-media discourse analysis of physician perspectives. CMAJ Open 2015;3:E134–9.
when faced with patients who request a hastened death. 13 Blondeau D, Dumont S, Roy L, et al. Attitudes of Quebec doctors toward sedation at
the end of life: an exploratory study. Palliat Support Care 2009;7:331–7.
Contributors  AT and YC planned the study and conducted the semistructured 14 Dyer O. "Euthanasia kits" are prepared for Quebec doctors as palliative care centres
interviews with the participants. YC conducted the descriptive content analysis of rebel on right to die. BMJ 2015;351:h4801.
the material. EB conducted the first iteration of interpretive analysis and prepared 15 Thorne S, Kirkham SR, MacDonald-Emes J. Interpretive description: a noncategorical
the material for discussion with all coauthors before the next iteration of analysis. qualitative alternative for developing nursing knowledge. Res Nurs Health
All authors contributed substantially to reporting the work through direct input 1997;20:169–77.
about organisation of the argumentation, quote selection and discussion of 16 Billig M, Condor S, Edwards D, et al. Ideological dilemmas: a social psychology of
everyday thinking. London: Sage Publications, 1988.
relevant literature. EB and AT are responsible for the overall content of the article as
17 Hudson P, Hudson R, Philip J, et al. Physician-assisted suicide and/or euthanasia:
guarantors.
Pragmatic implications for palliative care [corrected]. Palliat Support Care
Funding  The authors have not declared a specific grant for this research from any 2015;13:1399–409.
funding agency in the public, commercial or not-for-profit sectors. 18 Lavoie M, Godin G, Vézina-Im LA, et al. Psychosocial determinants of physicians’
intention to practice euthanasia in palliative care. BMC Med Ethics 2015;16:1–10.
Competing interests  None declared. 19 De Lima L, Woodruff R, Pettus K, et al. International Association for Hospice and
Patient consent  We used the standard consent forms from the IRB that reviewed Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide. J Palliat
the study. Med 2017;20:8–14.
20 Radbruch L, Leget C, Bahr P, et al. Euthanasia and physician-assisted suicide:
Ethics approval  The Institutional Review Board of the hospitals involved and McGill A white paper from the European Association for Palliative Care. Palliat Med
University Health Centre approved this study. 2016;30:104–16.
Provenance and peer review  Not commissioned; externally peer reviewed. 21 Vachon M. Quebec proposition of Medical Aid in Dying: A palliative care perspective.
Int J Law Psychiatry 2013;36:532–9.
22 Bernheim JL, Raus K. Euthanasia embedded in palliative care. Responses to
essentialistic criticisms of the Belgian model of integral end-of-life care. J Med Ethics
References 2017;43:489–94.
1 Dyer O. First death by voluntary euthanasia in Quebec is confirmed. BMJ 23 2012. Copie de Rapport- Comission Spéciale Mourir dans la Dignité. http://www.​rpcu.​
2016;352:i326. qc.​ca/​pdf/d​ ocuments/​rapportcsmd.​pdf (Accessed November 2017).
2 Quebec National Assembly, Bill 52: An act respecting end-of-life care. Québec Official 24 Barutta J, Vollmann J. Physician-assisted death with limited access to palliative care. J
Publisher 2014 http://​www2.​publicationsduquebec.​gouv.​qc.​ca/​dynamicSearch/​ Med Ethics 2015;41:652–4.
telecharge.​php?​type=​5&​file=2​ 014C2F.​PDF (Accessed 5 Dec 2015). 25 Chambaere K, Bernheim JL. Does legal physician-assisted dying impede
3 Carter v. Canada, 2015. (Attorney General) Supreme Court of Canada https://​scc-​csc.​ development of palliative care? The Belgian and Benelux experience. J Med Ethics
lexum.​com/​scc-c​ sc/​scc-c​ sc/​en/​item/​14637/​index.​do. 2015;41:657–60.
4 World Health Organization. Palliative care. http://www.​who.​int/​cancer/​palliative/​ 26 Dierickx S, Deliens L, Cohen J, et al. Euthanasia in Belgium: trends in reported cases
definition/​en/ (Accessed June 3, 2016). between 2003 and 2013. CMAJ 2016;188:E407–E414.
5 Smets T, Cohen J, Bilsen J, et al. Attitudes and experiences of Belgian physicians 27 Bernheim JL, Distelmans W, Mullie A, et al. Questions and Answers on the
regarding euthanasia practice and the euthanasia law. J Pain Symptom Manage Belgian Model of Integral End-of-Life Care: Experiment? Prototype? J Bioeth Inq
2011;41:580–93. 2014;11:507–29.
6 McCormack R, Clifford M, Conroy M. Attitudes of UK doctors towards euthanasia and 28 Oliver D. Moral distress in hospital doctors. BMJ 2018;360:k1333.
physician-assisted suicide: a systematic literature review. Palliat Med 2012;26:23–33. 29 Braverman DW, Marcus BS, Wakim PG, et al. Health Care Professionals’ Attitudes
7 Emanuel EJ, Fairclough D, Clarridge BC, et al. Attitudes and practices of U.S. About Physician-Assisted Death: An Analysis of Their Justifications and the Roles of
oncologists regarding euthanasia and physician-assisted suicide. Ann Intern Med Terminology and Patient Competency. J Pain Symptom Manage 2017;54:538–45.
2000;133:527–32. 30 Ten Cate K, van Tol DG, van de Vathorst S. Considerations on requests for euthanasia
8 Zenz J, Tryba M, Zenz M. Palliative care professionals’ willingness to perform or assisted suicide; a qualitative study with Dutch general practitioners. Fam Pract
euthanasia or physician assisted suicide. BMC Palliat Care 2015;14:60. 2017;34:723–9.
9 Campbell CS, Black MA. Dignity, death, and dilemmas: a study of Washington 31 Hermsen MA, ten Have HA. Euthanasia in palliative care journals. J Pain Symptom
hospices and physician-assisted death. J Pain Symptom Manage 2014;47:137–53. Manage 2002;23:517–25.

6 Bélanger E, et al. J Med Ethics 2018;0:1–6. doi:10.1136/medethics-2017-104339

You might also like