This article was published by the Psychiatric Times on December 19, 2022.
“The mere legalization of MAID creates a serious and discriminatory danger…”
|
Gordon Friesen
|
By Gordon Friesen
This article is in response to the series, “MAID and the Disabled” by Douglas W. Heinrichs, MD.
It is with the greatest pleasure I learn that Douglas W. Heinrichs, MD, has accorded me the honour of replying to my criticism of his views on assisted dying.
Dr Heinrichs incorrectly surmises that I support medical aid in dying (MAID) for patients at the end of life. I do not. However, I do believe that to usefully discuss MAID at the present time, we must stipulate a wider context; for this is how MAID is now increasingly defined and practised.
As the reader may recall, my principal argument (which Dr Heinrichs has not attempted to refute) concerns the inherently harmful effect upon the disabled and chronically ill of decriminalizing assisted suicide and euthanasia.
Simply stated: This decriminalization requires the selective removal of otherwise universal criminal code protections.(1) The mere legalization of MAID, therefore, creates a serious and discriminatory danger. That the danger is serious, we must certainly agree. Because, otherwise, we would have no prohibition, and no need for an exception. That the danger is discriminatory, appears in the fact that its burden falls upon one group alone.
In addition, I have made a second claim: that this discriminatory, lethal danger, has been imposed upon the members of that group, against their will. It is instructive, in this light, to review the recently successful passage, in Canada, of Bill C-7 (2021),(2) enacted to extend euthanasia to individuals not at the end of life.
Every single one of the testimonies and briefs introduced before Parliamentary Committee,(3) by disabled individuals and their organizations, was opposed to the expansion. Moreover, in a theatrically orchestrated Open Letter,(4) the Vulnerable Persons Standard(5) presented the signatures of no less than 147 nationally representative disabled organizations (and their allies) in opposition to the Bill.
If informed and engaged opinion are to be our guide, it can be confidently stated that the "disabled community" is unconditionally opposed to euthanasia eligibility for its members. And yet this legislation was carried, 213 votes to 106.(6)
What, we must ask, can possibly explain these facts?
Many of my disabled friends would point to the concept of ableism,(7) a highly developed social theory of injustice based upon systemic discriminatory oppression. Others, prefer to remain within the bounds of common language, in identifying an extremely negative exterior perception of disabled life.
Whatever explanation is chosen, the essential harm suffered by individual patients (faced with the unbridled subjectivity of individual doctors as noted by Susan Stefan, JD) results from the unfortunate expression of such prejudices under the cloak of legitimate medical care.
Sadly, also, we must remember that this is not just a disabled thing.(8) All of the above-noted concerns apply with equal force to assisted death at the end of life:
- Mere legalization creates a discriminatory danger for the nonsuicidal patient.
- This poisoned privilege is provided contrary to majority desire. For even in the Netherlands, among terminal cancer patients—who account for 70% of all euthanasia in that country—less than 1 in 10 will consent to die in that manner.(9)
- The push to "inform" all eligible patients, is a clear reflection of projected prejudice towards imperfect life.
On this point, Dr Heinrichs opens the door to a semantic rabbit-hole, where terms like "worth" are challenged in their common usage, and where it is suggested that the mystery of personal choice might permit a particular life to be terminated without implying negative judgment thereon. I will respectfully decline that discussion.
Allow me simply to conclude by reaffirming my own conviction (regardless of words or intention): that those who insist it is somehow appropriate for one class of persons to be deprived of criminal protections enjoyed by everyone else (and this against their clearly expressed collective wishes), would seem to have a fairly settled opinion as to the pertinence of continuing such lives; an opinion, I must add, which is very different from that of the people who are actually living them.
Gordon Friesen is a disabled individual who has followed the assisted death question closely since the early 1990s, and is currently President of the Euthanasia Prevention Coalition.
References
1. Statues of Canada: Bill C-14. An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) (2016). Accessed December 19, 2022. https://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent
2. Statues of Canada: Bill C-7. An Act to amend the Criminal Code (medical assistance in dying) (2021). Accessed December 19, 2022. https://parl.ca/DocumentViewer/en/43-2/bill/C-7/royal-assent
3. Standing Committee on Justice and Human Rights. House of Commons, Canada. Accessed December 19, 2022. https://www.ourcommons.ca/Committees/en/JUST/StudyActivity?studyActivityId=10983212
4. Open Letter in opposition to Bill C-7. Vulnerable Persons Standard. Accessed December 19, 2022. http://www.vps-npv.ca/stopc7
5. Vulnerable Persons Standard. Accessed December 19, 2022. http://www.vps-npv.ca/
6. 3rd reading and adoption of Bill C-7. An Act to amend the Criminal Code (medical assistance in dying). December 10, 2020. Accessed December 19, 2022. https://www.ourcommons.ca/Members/en/votes/43/2/39
7. Dr. Heidi Janz testifying before the Standing Committee on Justice and Human Rights, Parliament of Canada. November 10, 2020 (presentation at 12:19:00). Accessed December 19, 2022. https://parlvu.parl.gc.ca/Harmony/en/PowerBrowser/PowerBrowserV2/20201110/-1/34218?Embedded=true&globalstreamId=20&viewMode=3%20(testimony%20at%2012:19:00)
8. Friesen G. Lessons from the Canadian euthanasia debacle: utilitarian death-medicine piggy-backing on the power of choice—why (and how) to deconstruct the medical “narrative.” August 4, 2022. Accessed December 19, 2022. http://euthanasiadiscussion.com/wp-content/uploads/2022/11/connecticut_pdf_form_publish_v1.pdf
9. Note on Dutch cancer patients who consent to euthanasia.
Total Dutch deaths (2020): 168,678
https://www.statista.com/statistics/520011/total-number-of-deaths-in-the-netherlands/
Dutch cancer deaths (2020): 49,008
https://gco.iarc.fr/today/data/factsheets/populations/528-the-netherlands-fact-sheets.pdf
Total Dutch euthanasia deaths (2020): 6938
Cancer euthanasia deaths (2020): 4480
Euthanasia as fraction of total deaths (2020): 0.041
https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&cad=rja&uact=8&ved=2ahUKEwij-cCK8_77AhVfxikDHZ6xC6wQFnoECCYQAQ&url=https%3A%2F%2Fwww.euthanasiecommissie.nl%2Fbinaries%2Feuthanasiecommissie%2Fdocumenten%2Fjaarverslagen%2F2020%2Fapril%2F15%2Fjaarverslag-2020%2FRTE-jaarverslag2020_Engels.pdf&usg=AOvVaw0lnNcwldC9d12ycGWfjLg1
Cancer deaths as fraction of total deaths: 49,008 / 168,678 = 0.29
Cancer euthanasia as fraction of total euthanasia deaths: 4480 / 6938 = 0.65
Cancer euthanasia as fraction of total deaths: 0.65 * 0.041 = 0.027
Cancer euthanasia as fraction of total cancer deaths: 0.027 / 0.29 = 0.09 “less than 1 in 10”
This article was published in the World Medical Journal. (Link - page 28 - 39)
Written by: Dr Leonie Herx, Dr Margaret Cottle and Dr John Scott.
In June 2016, Canada legalized euthanasia
and assisted suicide, which legislators referred to collectively as “Medical Assistance
in Dying” (MAiD). In Sept 2018, an article was published in this journal summarizing
the early impacts of legalized euthanasia on
Canadian medicine [1]. In October 2019,
the World Medical Association (WMA) reaffirmed its opposition to euthanasia and
assisted suicide [2]. We propose in this article to update colleagues around the globe
on consequences of the rapid expansion and cultural normalization of the practice of intentional termination of life in Canada.
|
Dr Leonie Herx |
This paper will balance recent portrayals in
the popular and medical media that imply
only a positive impact as a result of the introduction of euthanasia into Canada’s health
system [3–4]. Evidence will be presented to
demonstrate that there are significant negative and dangerous consequences of this
radical shift for medicine, and particularly
for palliative medicine. These include the
widening and loosening of already ambiguous eligibility criteria, the lack of adequate
and appropriate safeguards, the erosion of
conscience protection for health care professionals, and the failure of adequate oversight, review and prosecution for non-compliance with the legislation. Indeed, what
we have seen over the past four years is that
“the slope has in fact proved every bit as
slippery as the critics had warned” [5]. We
also seek to reaffirm the vision of the physician’s role “to cure sometimes, to relieve often and to comfort always.”
How Many People Undergo
Euthanasia in Canada?
|
Dr John Scott |
In just under four years, the number of
euthanasia deaths has rapidly increased in
Canada. New statistics released by the federal government on February 24, 2020, show
that 13,000 people have died by euthanasia
since the legalization of the practice, which
represents approximately 2% of all deaths
in Canada. The government estimated
that there were 5,444 deaths in 2019 and
4,438 deaths in 2018 from euthanasia [6].
In comparison, Statistics Canada reported
1,922 deaths in motor vehicle accidents for
2018, the latest year for which statistics are
available [7]. Euthanasia proponents argue
that the Canadian death rate should stabilize at a level comparable to other jurisdictions with equivalent legislation, such as
the Netherlands where euthanasia now accounts for 4.9% of deaths [8]. However, it
is troubling that Canada’s rate has increased more rapidly than other permissive jurisdictions over a similar initial time period, and
that our rates are quickly approaching current rates in the Netherlands and Belgium,
where euthanasia has been legal for almost
20 years.
Expansion of Euthanasia
Practice and Legislative
Changes
|
Dr Margaret Cottle |
In addition to the increasing numbers of
cases, there is also an expanding range of
indications approved for euthanasia. In four
years, Canada has moved from approving
euthanasia for so-called “exceptional” cases
to euthanasia being treated as a normalized,
almost routine, option for death.
Ongoing court challenges to legislative requirements for euthanasia have resulted in
its approval for individuals with chronic illnesses such as osteoarthritis, dementia, and
physical disability [9, 10, 11, 12]. Media
reports point to less restrictive interpretations of eligibility criteria by assessors and
providers of euthanasia without intervention from the courts [13, 14]. These precedent-setting cases have produced what
euthanasia providers themselves call “not an
expansion of our law” but “a maturing of the
understanding of what we’re doing” [12].
This, in turn, has led providers to approve
cases they would not have previously approved due to earlier fears of criminal prosecution [15]. Although reports of criminal
code and regulatory body violations have
been well documented [16, 17], no charges
have ever been laid.
In September 2019, a Quebec Superior
Court ruling on the Truchon case [11]
struck down a central euthanasia criterion
for “reasonably foreseeable natural death”
(RFND) which may soon open up euthanasia to those with chronic conditions, disabilities and mental health issues as a primary diagnosis. The Federal Government is committed to expanding the legislation
and, on February 24, 2020, tabled a new bill
in Parliament to respond to the Truchon
case ruling to remove the requirement for
RFND [18]. In the near future, euthanasia
in Canada will almost certainly be open to
any person who feels their suffering cannot
be addressed except through intentional
termination of life. As mandated by the
2016 legislation, the Canadian government
is continuing to explore the additional inclusion of those with mental health issues
as a primary diagnosis, “mature minors” (i.e.
children), and euthanasia by advance directive (for those who may lose decisional capacity at some point in the future) as part of
a parliamentary review expected to begin by
June 2020 [19].
Even those who support euthanasia in some
circumstances are voicing concerns over
the rapid expansion of the procedure in
Canada, and a problematic lack of proper,
robust analysis of its utilization [20]. Many
who care for citizens with mental health
issues are extremely concerned, not only
that psychiatric conditions may be considered “irremediable” by some, but also that
if psychiatric indications are permitted as
the sole reason for euthanasia, these patients could possibly have euthanasia performed almost immediately, whereas the
wait time can be years for specialized, lifesaving psychiatric interventions and care
[21]. The lack of access to psychiatric care
in Canada is also putting patients who are
facing an end of life diagnosis in an even
more dire situation [22], given the high
risk for suicide in this population [23, 24].
Euthanasia deaths are now serving as a
growing source of organ and tissue donations in Canada [25]. Unlike other countries, Canada is the first jurisdiction to allow
non-patient-initiated discussion of organ
donation for those approved for euthanasia. In other jurisdictions where euthanasia
is legalized, including the Netherlands and
Belgium, only patient-initiated organ donation discussion is allowed, while in some jurisdictions, including Switzerland and
some U.S. states, subsequent organ donation
is not possible following assisted suicide.
Having the potential to alleviate the suffering of another person in need or to leave a
legacy appears to be a powerful motivator
in the decision for organ donation as part
of death by euthanasia [25]. One individual
who donated her organs after euthanasia
stated, “I thought the knowledge of having
full autonomy by way of MAiD was comforting, but, when the possibility of organ
donation was added to it, the sense of elation
is the only appropriate word for me.” [25].
Given that most requests for euthanasia
are due to existential suffering, in particular
feeling a burden to others and loss of meaning and purpose in life [26], the potential
“good” of organ donation may be a persuasive incentive for some who may otherwise
not have chosen to hasten their death.
Euthanasia providers are now making recommendations to add drugs (e.g., potassium chloride) to the existing regimen which
will cause rapid cessation of cardiac activity
and reduce the potential for ischemic damage to organs to be transplanted. The rationale for the change is that it “allows organs
to be donated in the best condition possible”
[27]. Questions are also being raised about
starting organ procurement processes prior
to death being determined which would
also allow organs to be donated in “the best
condition possible” [28]. There are a number
of difficult issues that arise when considering organ donation in these circumstances,
including conscientious objection of team
members involved in transplantation, the
“dead donor” rule, and informing potential
recipients of the source of the organs to be
transplanted.
More evidence of the normalization of euthanasia can be seen in the recent set of tips
published on how to prepare children for a
euthanasia death of a loved one. The author,
Co-Chair of the Ontario College of Family
Physicians Palliative/End of Life Care and
MAiD Collaborative Mentoring Network, recommends, “if the adults surrounding
them normalize MAID [sic], so will the
children” [29]. Medical literature regarding
children, death and grieving was used to extrapolate approaches to the euthanasia context. Tip #5 states that these conversations
can easily be had with children as young as
four years old. Tip #6 suggests that euthanasia providers should offer to show your
equipment (syringes, stethoscope, IV supplies). For example: “I have a tray with the
things I will use to help your loved one die.
These include medications and syringes.
I am going to leave them on the table and if
you would like to take a look you can. I will
stand beside the table and you can ask me
any questions” [29].
Euthanasia Due to Lack of
Access to Care or Lack of
Perceived Quality of Life
Examples are mounting of Canadians requesting euthanasia because of lack of access
to care, such as long-term care or disability
supports [30, 31]. A significant number of
reports have documented cases in which individuals have been told by health care professionals and others to consider euthanasia
as an “answer” to a perceived poor quality of
life or a lack of health care resources to meet
their needs. Motivation for these decisions
and suggestions appears to include the cost
of care or specialized supports [32, 33].
Following the Quebec Superior Court ruling on the Truchon case [11], over seventy
Canadian disability allied organizations
came together out of concern for the equality rights of vulnerable Canadians, and
signed an open letter asking the federal government to appeal the court ruling to the
Supreme Court of Canada [34]. A similar
open letter [35], urging an appeal in the
same case, was signed by over 350 physicians from all specialties across Canada. No
appeal was made. These disability experts
and physicians argued that the removal of the end of life criterion (RFND) means that
disability-related suffering, largely caused
by lack of support and societal inequality,
justifies the termination of a person’s life.
When the legislation is amended, this will
effectively enshrine in Canadian law the
principle that a person’s life can be ended
based on disability alone, further stigmatizing and devaluing the lives of those living
with disabilities.
Disability advocates continue to express
alarm at the evolving situation in Canada,
and Catherine Frazee (former Human
Rights Commissioner in Ontario and retired professor in Disability Studies) points
to the hidden message being conveyed by
government, that expanding medically assisted death so that it is not only for those
who are dying, but also, exclusively, for those
who have some illness, disease or disability,
makes us a ‘special case’ for ending a difficult
life. This categorically sends one and only
one message: we are not needed. Whatever
gifts we bring to the world, gifts of mind
and heart and body, are not of such value
that Canada will fight for us to live [36].
International attention was garnered last
year when the UN’s Special Rapporteur on
the Rights of Persons with Disabilities traveled to Canada in the spring of 2019. In her
end-of-mission statement, Ms. Devandas Aguilar stated that she is “extremely concerned about the implementation of the
legislation on medical assistance in dying
from a disability perspective…” and she
urged Canada to do more to “…ensure that
persons with disabilities do not request assistive [sic] dying simply because of the absence of community-based alternatives and
palliative care” [37].
“Safeguards” for Euthanasia
The Supreme Court of Canada, in the case
of Carter v. Canada (2015), that originally
led to the decriminalization and subsequent
legalization of euthanasia, stated that a “carefully designed and monitored system
of safeguards” would limit risks to vulnerable persons [38]. The safeguards in the
subsequent 2016 legislation [39] include
a mandatory ten-day reflection period between the request and the euthanasia procedure, the independent nature of the two
eligibility assessors, the requirement for
decisional capacity of the patient at the
time of the request and at the time of the
procedure, protection against coercion by
requiring two independent witnesses, and a
rigorous system of monitoring and review.
Currently, the ten-day reflection period is
often waived, and the newly proposed legislation would formally repeal this requirement [18]. In one cohort study of euthanasia
deaths in Ontario, 26% of euthanasia deaths
had the ten-day reflection period expedited
[40]. In Quebec, it has been reported that
60% of euthanasia cases had the ten-day reflection period waived and, of these cases,
48% did not meet the criminal code criteria
for removal (i.e., imminent risk of death or
imminent loss of decisional capacity) and
26% had no documented reason for waiving
the reflection period [41].
Compliance reports from Quebec have also
documented concerns about the “independent nature” of assessors [17]. In our personal experience, the assessors are in reality
not always independent. Assessors are often
colleagues belonging to a small community
of providers who practice euthanasia. The
second assessor can see the first assessor’s
report prior to seeing the patient or writing their own report. There are also no data
about how often a second assessor disagrees
with a first assessor, or how many different
assessors an individual seeks out, since there
is no limit to the number of assessments that
can be obtained. An individual patient only
needs two approved assessments. A study
from Belgium, which deals with euthanasia
for psychiatric reasons, suggested that 24%
of cases involved disagreement amongst
consultants, highlighting the challenge of
discordant assessments [42]. Although the current and proposed initial amendments
to the euthanasia legislation in Canada (response to the Truchon case) do not permit
euthanasia for psychiatric reasons alone, this
indication is under formal review [19] and
there is considerable public pressure for its
legalization from those who wish to see this
expansion [43].
We also note that it is difficult, even in
person, to determine decisional capacity
or possible coercion, especially if a case is
complicated. In Canada, both telemedicine
(video) and telephone (voice) are allowed
to be used for euthanasia assessments. Determination of a person’s decisional capacity is not straightforward and may require
advanced skills and tools [44], but there are
no formal requirements for training to assess decisional capacity and no requirement
for psychiatric consultation in complex
cases. Many physician colleagues, ourselves
included, report personal experiences with
patients who, in their opinion, lacked decisional capacity at the time of the euthanasia
assessment and/or at the time of the procedure, and still received euthanasia even
though formal documented concerns had
been raised with the euthanasia providers.
Monitoring requirements include only basic
demographic information and are reviewed
in retrospect [45]. Information about race,
education, socioeconomic status, and language abilities is not collected, and there is
no direct oversight or mechanism to stop
the procedure if red flags are raised.
A group representing euthanasia providers, the Canadian Association of MAiD
Assessors and Providers (CAMAP) has
been calling for the abandonment of the
requirement for two independent witnesses
(established to ensure protection against coercion). They contend that this requirement
is a bureaucratic frustration that blocks
patient access. New legislation proposes
to reduce the number of witnesses to one
and would make it legal for that witness to
be the patient’s paid personal care worker or health care provider [18]. There is also a
reasonable concern that the blanket misapplication of the so-called “duty to inform”
may soon suggest to all physicians that they
are required to offer euthanasia as an option
in every serious illness. If this is the case,
it will be impossible for physicians to avoid
the appearance, if not the reality, of coercion
for vulnerable patients who may already
feel they are a burden to others. Even supporters of euthanasia have already acknowledged there is no reliable way to measure
coercion [46].
Concerned Canadians continue to work
together to address the issue of safety for
vulnerable citizens. The Vulnerable Persons
Standard (VPS), initially developed in response to the Carter v. Canada decision,
is an internationally recognized evidence based framework “that provides clear and
comprehensive guidance to law-makers
by identifying the safeguards necessary to
protect vulnerable persons within a regulatory environment that permits medical assistance in dying” [47]. The VPS was
developed by a large body of advisors with
expertise in medicine, ethics, law, public
policy and the needs of vulnerable persons.
Despite the fact that the VPS has received
strong, broad-based, continuing support, it
has been completely ignored by every level
of government.
It is also important to note that, during the
legalization process, access to palliative care
was positioned as a “safeguard” for euthanasia. However, in reality, less than 30% of Canadians have access to any form of palliative
care and less than 15% have access to specialized palliative care [48]. Many, including
Shariff and Gingerich, have questioned if
euthanasia can truly be an informed choice
if there is no meaningful access to palliative
care [49].
Although economic considerations may
not currently be driving the normalization
and expansion of euthanasia in Canada, it
cannot be denied that the procedure is significantly cheaper than rigorous, traditional
palliative care. The financial savings of euthanasia for the health care system in Canada have already been reported [50] and with
an aging demographic and diminishing fiscal resources, the option to save money in
this way may become increasingly acceptable to health care decision makers.
Confusion Between Palliative
Care and Euthanasia
Another ongoing issue is the confusion
and conflation of euthanasia with palliative
care. The use of the euphemistic terminology of Medical Assistance in Dying to refer
to euthanasia in Canada has exacerbated this
confusion in both the public and health care
spheres. Canadian palliative care organizations have argued against the use of such
language, affirming that palliative care provides support or “assistance» in dying to help
people live as fully as possible until their natural death, but does not intentionally hasten
death [51]. This assertion is also supported
by the longstanding World Health Organization definition of palliative care [52].
In spite of clear and repeated distinctions
made by national palliative care organizations and the Canadian Medical Association [53–56], there are ongoing efforts by
some euthanasia providers to incorporate
euthanasia within the scope of practice of
palliative care, and to co-opt palliative care
language to describe their euthanasia practice, “as one of the many items in the palliative care basket” [57, 58]. Linking the
two practices in this way misleads other
health care professionals and the public regarding palliative care. The 2019 Canadian
Guideline for Parkinson Disease is a recent
example [59]. Palliative care was commendably presented as one of the five key recommendations for the approach to care for
persons with Parkinson Disease. However,
euthanasia (as “MAiD“) was listed directly
under the banner of palliative care support
and was the only specific measure listed!
National Canadian palliative care organizations have expressed concern that
this confusion and conflation of euthanasia and palliative care perpetuates the
myth that palliative care hastens death
and that misconception may prevent patients from seeking timely palliative care
interventions which improve quality of
life and, in some cases, enable people to
live longer [60]. The Canadian Society
of Palliative Care Physicians has stated
that “patients and families must be able
to trust that the principles of palliative
care remain focused on effective symptom management and psychological, social, and spiritual interventions to help
people live as well as they can until their
natural death.” [53].
Dr. Balfour Mount, the “father” of palliative
care in Canada, recently stated that
Canadian legislation utilizes the euphemism ‘medical assistance in dying’ (MAiD)
to define euthanasia/assisted suicide and
that language has caused confusion concerning its distinction from Palliative Care.
For over four decades, Palliative Care has
been providing expert medical management
to assist and support those who are dying
without hastening death or administering a
lethal dose of drugs to end life. The MAiD
euphemism confuses and causes fear in our
patients and the general public regarding
the practice of Palliative Care and the nature of Palliative Medicine [61].
Impact on Palliative Care
The 2016 Federal legislation positioned euthanasia (MAiD) as a health care right under the Canada Health Act, and so it must
be publicly funded and accessible to all Canadians [39]. Palliative care, however, is not
afforded such status and there is no similar
requirement for it to be funded and accessible to Canadians. This is highly inequitable
since almost 98% of deaths in Canada are
not through euthanasia [6].
Euthanasia proponents continue to co-opt
the vocabulary and tools of palliative care
to create a new discipline of “end of life
medicine” with a radically different philosophy, intention and approach that embraces hastened death as the “most beautiful
death” [3]. Under this banner of “end of life
care,” existing palliative care resources are
being used in some jurisdictions to provide
euthanasia, effectively reducing already limited resources for palliative care. This is the
case in Ontario where, in some regions, the
community Hospice Palliative Care Nurse
Practitioners were given the additional role
of providing euthanasia [62–63]. The assessment for and provision of euthanasia by
physicians in Ontario are billed to the Ministry of Health using palliative care billing
codes, despite the objections of palliative
care physicians [64]. The very distinct and
disparate goals and procedures followed by
euthanasia teams and palliative care teams
make it reasonable and advisable to separate
the two practices. This separation should be
accepted without acrimony or contention as
it is in the best interests of patients, their
families and the teams themselves.
The impact of normalized euthanasia on
our day-to-day clinical work in palliative
care has been profound. When someone
expresses a desire to die or a desire for hastened death (for example, “I just want this
to be over…”), there can now be a knee-jerk
reaction to consult the euthanasia team as
a first response and neglect what palliative
care has to offer. Until now, the standard of
care has been to engage the patient in serious dialogue, to try to understand the nature
of their suffering and grief expression more
fully, and to determine what supports might
be helpful. In palliative care, it is universally
accepted that expressing a desire to die and
talking about hastening death are most often normal expressions of grief, loss and
coming to terms with one’s mortality in the
face of a life-threatening condition. Such expressions of distress need to be explored and
supported with skilled palliative care interventions to better understand the nature of the suffering and how to address this, and/or
to accompany the person in their suffering.
There are many holistic, dignity-conserving
palliative care interventions such as Dignity
Therapy [65], developed by renowned Canadian palliative care psychiatrist Dr. Harvey
Chochinov, which are aimed at restoring
purpose, meaning, and reframing hope in
the face of the losses that accompany life threatening illnesses. Such therapies help a
person and their loved ones to focus on living, even while dying, and provide support
to accompany people on their journey, so
they do not feel abandoned or alone.
There is no mandatory palliative care consultation prior to euthanasia. The only requirement is that a patient is aware of all
options for care (informed of all means to
relieve suffering, including palliative care).
Awareness is not the same thing as meaningful access, and what a person understands
palliative care to be may influence the person’s understanding of what palliative care
has to offer. The Chief Coroner of Ontario,
who receives all reports of euthanasia cases
in the province, has identified that it is very
difficult to evaluate the quality/suitability of
the palliative care being offered to patients
who receive euthanasia [66]. Our own personal experience is that many patients and
health care professionals, including some
euthanasia providers, do not fully understand palliative care and its extensive array
of therapeutic interventions.
It is also our experience that, although palliative care teams offer to provide ongoing
palliative care for patients who request a euthanasia death, a number of these patients
reject palliative care involvement. These
patients often refuse many of the medications offered for optimizing symptom management, citing fear that the medications
will cause them to lose decisional capacity
and therefore their eligibility to receive euthanasia. Tragically and paradoxically, this
may result in the last days of life awaiting a euthanasia death being more highly
symptomatic, and patients may have euthanasia without ever having a proper trial
of excellent palliative care, even where it is
available. A Quebec study found that in patients requesting euthanasia, 32% of those
who received a palliative care consultation
had it requested less than seven days before euthanasia provision and another 25%
of palliative care consults were requested
the day of or the day after the euthanasia request [41]. With the removal of the
ten-day reflection period from euthanasia
request to delivery of the procedure in the
proposed revision for euthanasia legislation
[18], the reality of a meaningful palliative
care consultation seems even less likely.
Downar et al (2020) state that 74% of euthanasia cases in Ontario had palliative care
involved, however, the reporting measures
used during the study period do not allow
for a detailed evaluation of the quality of
medical care provided, including palliative
care, as it is not within the legislated requirements for oversight by the Office of
the Chief Coroner to review or collect this
information [66]. It is thus not possible
to delineate or evaluate either the quality
or quantity of palliative care involvement,
when it occurred in relation to the request
for euthanasia (the study only documented
that there was involvement at the time of
request), which palliative care team member provided it (e.g. physician, nurse, or
social worker, etc.) or whether there was
any meaningful involvement by a specialist
palliative care team. A number of detailed
responses outlining the significant problems
with the conclusions made in this paper
have already been published online [40].
Strong lobbies are pushing for euthanasia to
be available in every palliative care unit and
hospice in the country [67]. In many areas,
euthanasia is required to be provided in all
settings of care in order to avoid the withdrawal of public funding. Hospice societies
who fundraise to build the buildings and
co-support the day-to-day costs of specialized hospice care are also being mandated
to provide euthanasia on site or face closure. Hospices and faith-based institutions are
criticized for “blocking access” to euthanasia, even where access is documented to be
excellent [68].
Protection of Conscience
for Physicians
Participation in euthanasia is also a great
concern for physicians who are professionally and/or morally opposed to it. Some
physician regulatory bodies require participation via a mandatory referral for euthanasia by physicians unwilling to provide the
procedure themselves. For some physicians,
such an obligation makes them complicit
in an act they find not clinically indicated,
unethical, or immoral. This happens in
Ontario, Canada’s largest province, where
the College of Physicians and Surgeons of
Ontario has mandated such an “effective
referral” requirement [69]. Physicians who
decline to do this could face disciplinary action such as the loss of the license to practice
medicine. The Ontario courts have agreed
that the requirement for referral violates
the conscience/religious rights of physicians
(which are protected under the Canadian
Charter of Rights and Freedoms) but justifies the referral requirement to “ensure access» to euthanasia for patients, despite no
documented lack of access in Ontario [70].
This is the very first time in Canada that the
burden of ensuring access to other parts of
the health care system has rested on the individual physician.
As previously discussed, euthanasia proponents are now suggesting that doctors
must introduce euthanasia as an option to
all potentially eligible patients as a so-called
“duty to inform” [71]. However, in no other
clinical situations are physicians required to
discuss all potential options and procedures
if they determine that those options are not
medically indicated [72–74].
Some euthanasia providers are now refusing to become the “Most Responsible Physician” (MRP) via a transfer of care
prior to or during the euthanasia procedure.
One of the authors on this paper has directly experienced this at their local hospital.
Personal written communications have also
reported this practice happening at other
hospitals across Canada. In addition, some
euthanasia providers are refusing to accept
patient transfers from palliative care units
and hospices. These strategies profoundly
damage collegiality and may force physicians unwilling to collaborate in euthanasia
(professionally or morally) into an ethical
crisis, compelling them either to remain the
MRP, formally approving euthanasia and
responsible for all aspects of care for the
patient and family, or to refuse to approve
it and face contrived accusations of having
obstructed patient access.
Palliative care clinicians have a high level of
burnout [75–76], and the perceived lack of
control over the scope of practice and forced
participation in something that goes against
their convictions about the very core of their
vocation may be contributing to increasing moral distress and moral injury. This is
reflected in colleagues who come to us on a
daily basis to share experiences of repeated
distress from euthanasia cases. Even colleagues who support euthanasia in some circumstances have reported experiencing this
serious distress at times. Moral distress and
moral injury manifest as early retirements,
leaves of absence, and career changes by physicians who will no longer provide palliative
care due to the expectation that euthanasia is
included in the scope of practice. Additional
moral distress is experienced by some palliative care leaders when health region administrators arbitrarily put euthanasia administration and oversight into the “end of life
care” portfolio. The probable loss of palliative
care physicians from the workforce at a time
when even more clinicians are needed is in
part a direct consequence of such stressful
situations and heavy-handed measures.
Proponents of euthanasia use the phrase
“my life, my death, my choice,” which calls solely on the principle of autonomy as justification for euthanasia [77]. But, in Canada,
the delivery of euthanasia is anything but an
autonomous act. By design, it involves one
or more other individuals. Many individuals and health care and community services
commonly participate in each death, sometimes against their better judgment and
possibly even against their will.
While palliative care has so far been on the
forefront of the euthanasia experience, the
coming expansion of the legislation that will
allow euthanasia for suffering due to any illness, condition or disability, will have a much
broader impact on physicians from all medical disciplines, as well as on other health care
professionals. There will be very few areas
of medicine that euthanasia does not touch.
In less than four years since the legalization
of euthanasia in Canada we have witnessed:
- rapid increase in rate of death by euthanasia (now estimated to be 2% of all deaths
and expected to rise further) – a rate of
growth over 3 years that has surpassed all
other permissive jurisdictions
- the loosening of eligibility criteria by assessors and courts and the weakening of safeguard mechanisms in existing legislation
- the imminent expansion of euthanasia through legislative revision, despite
strong opposition from citizens in the
disability community, mental health professionals, palliative care clinicians and
public policy leaders
- the failure of federal and provincial governments to designate palliative care as a
right and to provide access to palliative
care that is at least as robust as access to
euthanasia
- the confusion and conflation of palliative
care with euthanasia; and
- the erosion of conscience protection for
physicians and other health care professionals leading to coerced participation
and demoralization.
These formidable challenges faced by physicians and patients in our difficult Canadian experience should not lead to discouragement but should instead inspire a reaffirmation of the commitment to traditional,
whole-person medicine. Patients, loved
ones, clinicians, and even society in general are all deeply enriched when palliative
teams use our expertise to show compassion through excellent clinical care in an
on-going, committed relationship with
each patient, no matter how difficult the
circumstances or how complicated the issues. Suffering — pain, fear, loss of control,
sense of burden—is not solved by hastened
death, but by this excellent care, delivered
in a community and a society that honours
and protects our most vulnerable citizens at
the most difficult times in their lives. Euthanasia is not the panacea that proponents
promise. Its legalization and subsequent
rapid normalization have had serious negative effects on Canadian medicine and on
Canadian society as a whole. We urge the
WMA and our colleagues around the world
to look beyond the simplistic media reports
and to monitor developments in Canada
carefully and wisely before making any
changes in their own country’s legal framework for medical practice.
Authors’ Affiliations (Institutional affiliation are provided for identification purposes only and do not imply endorsement by the institution)
Leonie Herx MD PhD CCFP (PC) FCFP Chair, Division of Palliative Medicine Associate Professor, Department of Medicine Queen’s University Kingston, Ontario, Canada
Margaret Cottle MD CCFP (PC) Assistant Professor, Division of Palliative Care Faculty of Medicine, University of British Columbia Vancouver, British Columbia, Canada
John F. Scott MD MDiv Associate Professor, Division of Palliative Care, Department of Medicine, University of Ottawa Ottawa, Ontario, Canada
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TORONTO, ON – More than 250 doctors from across Canada have signed an urgent open letter to the Attorney General, David Lametti, asking him to appeal a Quebec Superior Court decision that would expand access to medical assistance in dying to those who are not nearing natural death. The decision on the appeal must be made by October 18.
The signatories agree that medical assistance in dying must have limits, and that individual rights must be balanced with protections for vulnerable citizens and greater society. The letter calls for Parliament to address equality gaps that cause suffering and poor health for patients with life left to live rather than provide them medical assistance in dying.
The letter (La lettre ouverte est disponsible en français ici) was penned by Dr. Margaret Cottle and her colleagues who act as advisors to the Vulnerable Persons Standard (VPS).
Catherine Frazee, Professor Emerita, Ryerson University School of Disability Studies, is a founding advisor on the Vulnerable Persons Standard. Frazee commented:
“In the robust debates that gave shape in 2016 to our present law, Canadians with disabilities were fully engaged and our contributions earned the respect of our legislators and fellow citizens. We raised the alarm that discrimination, stigma and social and economic deprivation could make people vulnerable to seeking a premature death.
When Bill C-14 became law, it carefully balanced the needs of persons whose suffering at the end-of-life was intolerable, and persons who would be vulnerable to suicide when denied the supports and conditions for a dignified life. The foundational requirement that MAiD be reserved for persons already nearing the end of life was a bulwark against this grave danger, and an affirmation of the inherent value and dignity of our lives. The same Prime Minister who heard us in 2016 is now arbitrarily refusing to appeal the Truchon and Gladu decision and has betrayed the commitments of a carefully considered law.”
Dr. Cottle recognized this vulnerability in her patients,
“As physicians, we have extensive, first-hand experience in journeying with our fellow citizens, including those who are living with illnesses and disabilities. We understand--and mourn--the many challenges we encounter together due to inadequate supports of every kind. Each member of our Canadian family deserves to be equally valued, equally supported, and equally protected. This is why we call upon the government of Canada to appeal the Truchon and Gladu court decision, and to affirm every Canadian’s right to live with dignity.”
The letter expands upon the concerns raised by 65+ community organizations - including members of the disability rights community, and health-focused organizations like the Canadian Association for Mental Health and the Canadian Society of Palliative Care Physicians - in an open letter released late last week.
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For media inquiries, please contact Natalia Hicks, Vulnerable Persons Standard Secretariat at info@vps-npv.ca 1-855-661-9611 ext 221