Response to Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability

This report, signed by >170 scholars, clinicians, and researchers in palliative care and related fields, refutes the claims made by the previously published Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability. That report attempted to argue that structural vulnerability was not a concern in the provision of assisted dying (AD) by a selective review of evidence in medical literature and population studies. It claimed that palliative care has its own safety concerns, and that “misuse” of palliative care led to reports of wrongful death. We and our signatories do not feel that the conclusions reached are supported by the evidence provided in the contested report. The latter concluded that the logical policy response would be to address the root causes of structural vulnerability rather than restrict access to AD. Our report, endorsed by an international community of palliative care professionals, believes that public policy should aim to reduce structural vulnerability and, at the same time, respond to evidence-based cautions about AD given the potential harm.

crucial for translating knowledge and has implications for future studies, policies, and clinical practice.The interpretation and faithfulness to the original text and how a piece of evidence applies to an argument can generate what has increasingly been called ''spin.'' 1 Spin has various definitions, but in biomedical literature it is ''specific reporting that fails to faithfully reflect the nature and range of findings, and that could affect the impression that the results produce in readers.'' 2 We wish to express our deep concern about the flawed scholarship in the report on Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability by Downar et al. 3 We recognize that Medical Assistance in Dying (MAiD) is a fiercely contentious and polarizing issue.We believe individuals should be allowed to voice their opinions, no matter what they are.However, we take exception to seeing those opinions presented as if they were evidence based when the conclusions appear to be reached by ignoring critical information within cited sources and engaging in speculation without basis.The resultant conclusions can only be described as spurious ones.Given its potential to affect future research, medical practice, policies, and public health, this special report cannot enter the public record without it being strongly contested.

Withholding Critical Information
The authors point out that assisted death (AD) is more common in people with higher income and education, with the implication being that these people are not structurally vulnerable.Of the four articles referenced, two are Canadian studies conducted before AD was available to people who did not have a reasonably foreseeable death and who were more likely to be structurally vulnerable.The American study consists of 114 patients over the first two years of AD in a system where applicants must be within six months of death.The Swiss population-based study is from 2003 to 2008, with only 20 of the 1301 ADs being for mental illness.
Studies of patients whose death is not reasonably foreseeable reveal a different picture.A Dutch review of the publicly available information on 66 ADs for mental illness between 2011 and 2014 reported the ratio of women to men as 2.3:1. 4 This statistic parallels the 2:1 ratio of females to males in attempting suicide during vulnerable times, most of whom do not attempt suicide again.The obvious concern is whether AD for mental illness is providing a lethal means for women to die, during times of vulnerability, who would otherwise recover and regain the desire to live.
Most of the disorders were depression (55%), but 12% had psychotic features, and 52% of the 66 cases had personality problems, some without an official diagnosis.The majority of patients (56%) reported unresolved social suffering including social isolation or loneliness.The majority of patients had long histories with mental illness and had tried multiple therapies, though 56% had refused some therapies making the judgment of treatment futility challenging.It must be noted that Canadian law does not require any treatments be tried or accessible before providing AD.

Selectively Representing Data to Confirm a Point of View
The authors state that people with frailty and organ failure, whom they describe as more vulnerable and dependent than patients with cancer, receive less palliative care and do not make up nearly as many patients receiving AD.Hence, they conclude that AD is not targeting those with structural vulnerability.The article they reference by Teno et al. 5 examines the association of functional decline comparing cancer deaths with those caused by heart failure, stroke, and diabetes.
Although people with noncancer illnesses started their last year of life with more disability than those with cancer, the latter experienced a more precipitous decline in activities of daily living (ADL) starting approximately five months before death, leading to functional impairment exceeding that of noncancer illnesses in the final months.This rapid decline was associated with where the person died and whether palliative care was involved in their last months of life.
Studies show that people with cancer receive more palliative care relative to frailty or organ failure in multiple countries, because of the ''decline predictability'' 6 of cancer as opposed to the unpredictable course for organ failure and frailty. 7,8Hence, cancer is the most prevalent diagnosis for AD because its terminal course is predictable, and it is the most common cause of death in Canada. 9

Excess Mortality: Speculation Without Understanding
The authors note that life expectancy has grown in countries that permit AD as opposed to those that do not.Life expectancy in a country depends on public health outcomes resulting from policies in health care and beyond, which affect the social determinants of health. 10Early childhood deaths have had the most impact over the centuries, with the impact of AD in adults being minimal.It is not logical to make conclusions about one factor in complex systems in different countries.
The authors state that during COVID-19, which targeted structurally vulnerable people, AD increased even further in Canada, Belgium, and the Netherlands, yet these countries had substantially lower excess mortality during this time.
Tracking excess mortality requires researchers to know the cause of death, and only some provinces in Canada mandate that AD be noted on the death certificate. 11As such, in the Netherlands, Belgium, and parts of Canada, it would be impossible to sort these deaths out from others to characterize them as excess mortality.Excess mortality is difficult to detect even with the best design, but especially during a pandemic, when there is another source of excess deaths that was much more common.
The authors state that the importance of these population studies ''cannot be overstated.''They even double down by suggesting that a rise in life expectancy in countries allowing AD suggests vulnerability may offer protection.The evidence they provide does not support this.

Suggesting Palliative Care Is Culpable for Unintended Deaths
The authors imply that, like AD, palliative care is culpable for unintended deaths.
The first claim notes that palliative care providers regularly advocate for improved access to opioids for people with advanced illness, and ''Increased opioid availability is a key facilitator of good PC, but it is also a contributor to the opioid crisis in many countries.''They state, ''Roughly 8000 Canadians died of an opioid overdose in 2021 alone; a substantial proportion of these overdoses involved a pharmaceutical opioid that was either prescribed or diverted.''They reference a Health Canada website publication that is no longer directly available, as it is updated yearly.
In the version accessible now, 12 a large headline proclaims, ''toxicity of supply continues to be a major driver of the crisis'' and notes, ''Of all accidental apparent opioid toxicity deaths in 2022 ( January-December), 79% involved opioids that were only non-pharmaceutical.''More studies are reporting an increase in overdoses from illegal opioids, even as the use of prescription opioids is declining. 13Implying that palliative care is partly responsible for the opioid crisis is a misreading of the evidence and disregards the complex nature of the problem.
The second claim involves the Liverpool Care Pathway (LCP).Downar et al. state there were ''numerous complaints of widespread abuse and hastened deaths, particularly among the structurally vulnerable.''The LCP independent review reported that ''some relatives and carers have reached the conclusion that 'the pathway' represents a decision on the part of clinicians, in effect, to kill their dying patients, when that is clearly not the case.'' 14 Not Listen to Any Media Cases: They Are All One Sided The authors cast doubt on media stories showing that vulnerable people have been approved for AD.They review only two of the numerous media-reported cases that have surfaced in Canada.The first is a woman with multiple chemical sensitivities who requested and received AD.Downar et al. state her situation was incorrectly portrayed in the media as poverty and a lack of adequate housing rather than intolerable suffering related to her underlying condition.They reference testimony from her AD provider, reading a note from the woman thanking her for believing in her suffering and granting her AD. 15his same AD provider signed a letter to federal housing and disability government officials confirming that her symptoms improved in cleaner air environments and asked for help to find or build a chemical-free residence.Media 16 quotes the letter saying, ''We physicians find it UNCONS-CIONABLE that no other solution is proposed to this situation other than medical assistance in dying.'' The second case is a man whose request for AD was because of impending homelessness.They quote a twitter post from the man saying the story was ''hijacked by the right trying to spin it into their own agenda.''The full quote says: ''It seems my story has been hijacked by the right trying to spin it into their own agenda.I hope people don't get distracted by this.The real issue isn't whether or not someone like me should be able to access MAiD.It's making life bearable enough that they won't need to.''We agree people should receive adequate support to live, and we desire adequate safeguards to prevent life termination when structurally vulnerable people are despairing from a social failure of society.
In both these cases, the authors edited the patient's stories and words to affirm their argument that there are no concerns of structural vulnerability driving AD.
][19] A 2021 Canadian academic study questioning whether unmet needs were driving requests for AD interviewed 20 of 120 clinicians of the national association of AD assessors and providers. 20They did this study the same year that Canada first approved AD for persons without a foreseeable death, so few cases would be expected.Although the article says unmet needs were rare, it reports ''There were some cases in which the provider was worried that unmet needs were driving the request for MAiD.These situations included poor quality or inappropriate housing, inadequate home care in someone who refuses to go into long term care, long waitlists for publicly funded multidisciplinary chronic pain clinics and no local care available requiring unacceptable travel.'' The same study quoted an AD provider's take on the conflict of an applicant with structural vulnerability requesting AD from them: ''I think we've become-I don't know if comfort is the right word, but we've become more accepting that there are patients that have unmet needs that if they were met may change their request or their timeline, but that those needs are not meetable under the current system, and therefore, we go ahead and approve the patient and sometimes provide MAiD.''There is evidence in scholarly publications 20,21 that structural vulnerability may be driving some cases of AD.Yet, in a report from 2022 testimony to a parliamentary committee reviewing AD, 22 the lead author of the article we contest stated: ''there is absolutely no data suggesting that the practice of MAiD at this point is driven to any degree by poor access to palliative care, socio-economic deprivation or any isolation.''Independent of the total numbers of confirmed cases of Canadians receiving AD for structural vulnerability, which may be under-reported given current data reporting requirements that are based on provider selfreported data rather than prospective oversight, we are concerned by the blanket dismissal and minimization of any deaths by AD for unmet social needs.

Oversight of AD: Only What Looks Good
The article states: ''Any concerning cases are referred to the appropriate regulatory body for further investigation.Although we do not have reports from all jurisdictions.''. 3t references the Quebec oversight body that publishes a yearly report.No details about cases who did not comply with legislation, nor what was done about it are provided.Dr. Michel Bureau, head of the oversight body, recently sent a memo to doctors that was published online, 23 reminding them to stay within the limits of the law.
Two notes from the memo stand out: ''Advanced age and aging-related problems are not a serious illness and incurable and do not warrant MAiD''; and ''Shopping around'' for a favorable second opinion is not an acceptable practice.''Dr. Bureau stated during an interview 24 that 15 out of 3663 doctor-ADs in Quebec between spring 2021 and spring 2022 did not comply with the law.The physician's regulatory body declined to take any disciplinary action.
In Ontario, Canada's most populous province, the Ontario coroner reviews AD deaths, and the only public document that appears is their framework of notification of assessors/ providers if they are not following regulations.It appears to require ongoing violations before any reporting to a regulatory body or police occurs. 25Thus, it is not surprising that no cases related to AD have yet to appear in the Ontario College's case outcomes.The chief coroner of Ontario recently announced a Medical Assistance in Dying Death Review Committee (MDRC) 26 in response to increasing health, social, and intersectional complexities arising from current and pending legislative changes.The MDRC will provide an independent expert review of MAiD deaths to assist in evaluating public safety concerns.
British Columbia (BC) has a MAiD Oversight Unit that lies within the ministry of health, but it has no publications or public facing website.There is only one BC coroner's death review panel on AD and that covers only the year 2016. 27he report noted regional variations in the provision of AD and a lack of a framework for case review.In 2018, the coroner's office announced that the only AD cases they would be reviewing were those where the underlying condition leading to the request for MAiD relates to an accident, violence, or self-inflicted injury; or if the death was provided in a mental health or correctional facility. 28he memo from the Quebec oversight body and the formation of the Ontario MDRC have happened since the publication of the article we are contesting.These changes counter the article's assertions that all is well and that we should trust the current oversight.

Conclusion: More Spin
The article closes by restating the major argument that the data show no evidence of structural vulnerability in the provision of AD and that controversies in palliative care are the mirror image of those with AD.The evidence, however, simply does not support the many claims and conclusions.
There is evidence of people receiving AD when they are structurally vulnerable, and providing death to people for those situations was never intended by the legislation and should be rigorously and transparently investigated.We believe that public policy should aim to reduce structural vulnerability in all people and, at the same time, be responsive to evidence-based cautions about AD given the potential harm.We take no pleasure in writing this rebuttal but feel compelled to expose what appears to be spin that is harmful to future scholarship, clinical practice, health policy, and public education focused on the practice of assisted dying.
An International Community of Palliative Care Professionals