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JOURNAL OF PALLIATIVE MEDICINE

Volume 26, Number 7, 2023 Special Report


ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2023.0209

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Medical Assistance in Dying and Palliative Care:


Shared Trajectories

James Downar, MD, MHSc (Bioethics),1,2 Susan MacDonald, MD, CCFP(PC), FCFP Founder,3
and Sandy Buchman, MD, CCFP(PC), FCFP4,5
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Abstract
Medical Assistance in Dying (MAID) and palliative care often have an antagonistic relationship in jurisdictions
where both are legal, but the early ethical and legal history of palliative care closely mirrors that of MAID in
important ways. Palliative practices that are commonplace today were considered homicide or ‘‘medically
assisted death’’ in most jurisdictions until quite recently. Moreover, while many patients request MAID today
for reasons that are criticized as ‘‘ableist,’’ the same rationale is accepted without comment or judgment when
used to justify withdrawal of life support or a discontinuation of life-prolonging therapies. Concerns about
factors that undermine autonomous decisions for MAID would apply equally to routine palliative care practices.
By the same token, palliative care exists because no field in medicine is able to fix every problem it encounters.
It is ironic, therefore, that some palliative care providers oppose MAID with the hubristic argument that we can
relieve all forms of suffering. Palliative care providers may choose not to participate in MAID, but palliative
care and MAID do not have to be mutually exclusive and are often complementary and synergistic for patients
and families.

Keywords: active; assisted; editorial [publication type]; euthanasia; palliative care; suicide; voluntary

their patients.2,3 Even as late as 2002, an international survey


L ooking at the (sometimes) antagonistic relationship
between Medical Assistance in Dying (MAID) and
palliative care today,1 it is easy to overlook the parallels
of oncologists found a substantial hesitancy to disclose a poor
prognosis or suggest hospice care,4 and many reported giving
between the two practices in terms of legal status and his- treatments they knew to be ineffective so as not to ‘‘destroy
torical acceptance by the medical community. The hospice hope.’’4 In 1974, the American Heart Association Guidelines
movement that formed in the 1960s and 1970s in United for Cardiopulmonary Resuscitation explained for the first time
Kingdom was far from accepted by mainstream medical that cardiopulmonary resuscitation (CPR) should be withheld
practice anywhere in the world. Core elements of modern (i.e., a ‘‘Do-not-resuscitate’’ order) in some situations where it
palliative care (e.g., disclosure, withholding ineffective and would not offer benefit; they did not suggest discussing (or
unwanted therapies, advance care planning) were virtually even disclosing) this decision to patients or family members.5
unknown and considered unethical or even illegal. Advance Directives only became legal for the first time in
In the 1960s and 1970s, very few physicians anywhere in California in 1975,6 and were not legally valid in many ju-
the world would routinely disclose a diagnosis of cancer to risdictions for years afterward. Even when the limitations of

1
Division of Palliative Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
2
Department of Critical Care, The Ottawa Hospital, Ottawa, Ontario, Canada.
3
Departments of Medicine and Family Medicine, Memorial University of Newfoundland, St. John’s, Newfoundland and Labrador,
Canada.
4
Division of Palliative Care, Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada.
5
Freeman Centre for The Advancement of Palliative Care, North York General Hospital, Toronto, Ontario, Canada.
Accepted May 23, 2023.

896
MAID AND PALLIATIVE CARE: SHARED TRAJECTORIES 897

medical care were recognized, they were often not ac- are deeply supportive of the right to request an intentional
knowledged to the patient or the public. There was a strong shortening of life when this is no longer realistic.13,14 Palli-
‘‘culture of cure’’; health care professionals were expected to phobia is not driven by a fear of MAID.
maintain a positive attitude and to continue to provide MAID and palliative care are not mutually exclusive op-
treatment until the bitter end. Palliative care was not neces- tions. Studies of MAID recipients have routinely shown very
sary because high-quality medical care was sufficient to cure high rates of PC involvement (70–90%).15–18 In the Nether-
virtually every problem. lands, palliative care professionals are also the MAID assessors
Withdrawing life-sustaining measures, a routine practice or providers in 60% of MAID cases. This can be reassuring for
in much of the world today, was widely considered to those concerned that MAID might be driven by poor access to
be homicide in the same jurisdictions until quite recently. In PC services. Nevertheless, it is notable that PC involvement
1975, Karen Ann Quinlan’s parents requested that she be re- generally precedes the MAID request by many weeks or
moved from a mechanical ventilator after she showed no sign months.18 This suggests that PC is not merely being consulted
of recovery following anoxic brain injury. Her physicians by a medical team as a procedural step before performing
refused, and the New Jersey Superior Court indicated that MAID, but that the patients themselves may be driving both.
withdrawal of life-support would constitute homicide.7 People who request or agree to involvement of the palli-
Although this decision was overturned on appeal,8 physi- ative care team are likely more accepting of their prognosis,
cians in other jurisdictions continued to oppose even com- and more willing to self-advocate for prioritizing quality of
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petent requests to discontinue life-sustaining measures in life over quantity of life. And herein lies a cognitive disso-
favor of palliative care. In 1992, Nancy B required a ruling nance for palliative care professionals who are opposed to the
from Quebec’s Superior Court to have her ventilator legally legalization of MAID. It is well and good to invoke the
withdrawn after she developed a case of severe, refractory ‘‘Platinum Rule’’ when people are not requesting MAID,11
Guillain-Barre syndrome lasting 2.5 years.9 Notably, her at- but then we cannot immediately discard the Platinum Rule
tending physician had initially refused to grant her wish, when a competent person is requesting MAID. A rule is not a
explaining that ‘‘She is young; she is lucid, conscious, and rule if it is selectively applied or abandoned to achieve the
she could go on living for many years.’’10 Although such result desired by the provider (i.e., no MAID).
practices are commonplace today in Canada and completely
in alignment with the philosophy of palliative care, this case
was described at the time as a medically assisted death.9,10 Why Do We Only Question Autonomy When People
Request MAID?

We May See a Difference, But Most Patients Do Not Autonomy and decisional capacity can obviously be un-
dermined by a variety of factors (e.g., socioeconomic, illness-
Notably, the history of the hospice movement and of pal- related, societal), but again, we cannot selectively apply this
liative care practice in general is one of patient-driven concern to reject autonomy only in situations where a person
changes in practice and law, often without the support (and is requesting MAID.19 People who are structurally ‘‘vulner-
sometimes with the active resistance) of medical practition- able’’ are at risk of receiving treatments they don’t want, but
ers and organizations. For better or worse, patients and they are also at risk of not receiving treatments that they do
families have embraced the idea that quality of life is want. And if we are concerned that vulnerability or societal
sometimes more important than quantity of life. pressure is shortening life by driving a decision to request
Generally, this is not a dichotomy, and patients can pursue MAID, we must be equally concerned about these factors
quality without compromising quantity. However, when this influencing people who choose to stop life-sustaining or
cannot be achieved, palliative care providers work with the disease-modifying treatments in favor of palliative care.
person to help them choose when and how they may wish to When Nancy B requested that her ventilator be discontinued
prioritize quality over quantity. This is the core ethos of in 1992, she explained,10
palliative care, to the degree that Dr. Harvey Chochinov re-
cently described it as a ‘‘Platinum Rule’’11 (‘‘doing unto I am fed up with living on a respirator; this is no longer a
patients as they would want done unto themselves’’). It is also life..I do not want to live on this machine.. The only thing I
the core ethos of MAID. The goal of the MAID provider, have is television and looking at the walls. It’s enough. It’s
been 2 1/2 years that I’ve been on this thing, and I think I’ve
similar to the palliative care (PC) professional, is not to
done my share.
hasten death. The goal of each is to support choice.
Of course, there are many physicians who would support a Conspicuously absent from the public response was any
palliative philosophy for their patients, yet strongly oppose a notion that her decision was influenced by societal ableism, or
request for MAID. Palliative care professionals often per- the lack of personal or home care resources to allow her to live
ceive that some patients or family members resist a palliative at home, while dependent on the ventilator. Nor was there any
approach to care (e.g., limiting life-sustaining measures, public comment that her desire to die would have changed if
adding comfort medications) because of concerns that it she had received psychotherapy, or more emotional support
would compromise survival. From this observation, they from health care workers and family. On the contrary, Pro-
assume that excluding MAID from palliative care settings fessor Margaret Somerville (a law professor and MAID op-
and practice will make palliative care more acceptable to ponent) commented that she was ‘‘pleased’’ with the decision
patients and family members. It is important to emphasize and that ‘‘.if you think of the consequences of the alternative,
that palliative interventions do not appear to shorten life.12 that is completely unacceptable. Here she is.a completely
However, while people may fear unintentional shortening of conscious young adult. There obviously was clear and con-
life when they are pursuing a cure or prolongation of life, they vincing evidence that she wants to end it.’’10
898 DOWNAR ET AL.

Although this case referred to the discontinuation of a does not feel comfortable with MAID should have the support
ventilator and not MAID, Nancy B was clearly requesting of a team, who can supplement care or take the patient in
death. She was not hoping to continue living in the same state transfer.21 Palliative care and MAID do not have to be mutu-
once the ventilator was discontinued. And this request was ally exclusive and are often complementary and synergistic for
supported by the palliative care community then as it would patients and families. Both respect and support patient au-
be today. Similarly, when patients transition to comfort- tonomy. Cooperation and collaboration enhance trust in the
focused care as they near the end of life, the decision is patient’s health care providers, the very foundation of patient-
frequently motivated by a loss of independence, or an in- centered, effective, and compassionate health care.
ability to perform activities that gave their life meaning. As
PC providers, we do not dismiss this rationale as ‘‘ableism’’; Funding Information
we respect a person’s right to rate their own distress and
accept that they are best positioned to determine when that No funding was received for this article.
distress should prompt a change in treatment.
One legal expert did observe at that time that in the United Author Disclosure Statement
States, courts had ordered life-prolonging care continued for 2 J.D. has received honoraria from Joule, Inc., for develop-
of 14 cases of critically ill women whose family members felt ing educational material related to MAID provision, and is a
they would want it discontinued, but had not ordered life- former advisor to Dying with Dignity Canada, an advocacy
Downloaded by University of Toronto via COAHL from www.liebertpub.com at 07/13/23. For personal use only.

support continued for any of 8 cases involving men.9 The group. S.M. has no conflicts to declare. S.B. is a palliative
reasoning in these cases appeared to be based on gender-based care physician, a cofounder of Neshama Hospice in Toronto,
stereotypes—women being ‘‘emotional’’ and ‘‘liable to a MAID Assessor and Provider, a member of the Canadian
change [their minds],’’ required ‘‘protection against their own Association of MAID Assessors and Providers (CAMAP),
instincts’’; men, being more ‘‘rational’’ and ‘‘capable of taking and a co-founder and advisor to MAiDHouse, a not-for-profit
responsibility for the preferences they exhibit,’’ clearly did not organization aimed at providing a home-like setting for eli-
require such protection.9 Of course, nobody can rationally gible patients to receive MAID.
argue today that we should treat men and women differently in
terms of their autonomous choices. However this is a recent References
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