We as a society must reclaim individuals with advanced disease, disability, mental illness, and aging as part of who we are.
We as a society must reclaim individuals with advanced disease, disability, mental illness, and aging as part of who we are.
Medical progress has allowed us to live longer with less disability. But because the culture of medicine identifies life prolongation as its premier goal, death is viewed as a failure rather than a natural completion of the life cycle. Identifying the tipping point where prolonging living becomes prolonging dying, stopping technology, and managing the dying process requires a skill set not emphasized in medical schools. Witnessing prolonged dying with poor symptom control has made people even more fearful of the dying process. And society has given over to medicine the entire care of the aging, disabled, and dependent, abandoning them to an isolated existence. It is not surprising that Canada now has a law permitting physician-assisted death (PAD).
A walk through the relevant legislation in Canada, Bill C-14 on medical assistance in dying (MAID), is probably the best way to highlight concerns that we are stepping into dangerous territory. There are some basic criteria that a patient must meet to qualify to receive medical assistance in dying, such as being eligible for health services funded by a government in Canada and being at least 18 years of age. The request must be made in writing, and there must be a waiting period of 10 days between the day on which the request is signed and the day on which the MAID is provided, because it is well known that people’s desire for hastened death can change over time and according to their physical and psychological symptoms. Indeed, a study at a Seattle Cancer Centre showed that of 114 people who inquired into the Death with Dignity program, one-third did not pursue the program, one-quarter made a first request but then either died or didn’t make the required second request, and one-third followed up with their request and obtained the prescription (but only 60% of those people died by ingesting the medication). Clearly one cannot take what a patient says in this situation at face value and must acknowledge the suffering that is causing the request for assistance in dying and tease out the complex issues that may lie behind it. Will all physicians take the time this requires and seek the expertise to address the issues that arise?
To be eligible to receive MAID under the new law, a patient must have a “grievous and irremediable medical condition,” which is defined, in part, as having a “serious and incurable illness, disease, or disability,” and being in an “advanced state of irreversible decline in capability.” Poor symptom management can mimic a refractory state of decline, and the patient’s health care providers may or may not know what to do to improve quality of life in advanced disease. A recent systematic review of undergraduate medical education in palliative care revealed a fragmented and variable approach and a lack of institutional and financial support. As a safeguard, a second physician or nurse practitioner must agree that the patient meets the eligibility criteria for MAID and, hopefully, between the two practitioners there will be enough knowledge to identify and address physical and psychological symptoms if they are the source of the advanced state of decline. This safeguard is in place to protect vulnerable people and to ensure that all possible solutions to the intolerable suffering have been explored.
But what happens if the two practitioners disagree? There is no process for resolving disagreements. Does this mean that someone could seek out as many physicians as it takes to get two to agree? Proponents of PAD say vulnerable people are protected and there is no slippery slope. Two doctors and a court of law in Belgium granted a convicted serial violent offender the right to euthanasia in the fall of 2014. After 30 years of prison he had requested either transfer to a psychiatric treatment facility or PAD. A transfer was refused but euthanasia was permitted by both the Belgium Federal Euthanasia Commission and the Ministry of Justice. The physician who was set to perform the euthanasia withdrew support 5 days prior to the proposed date. Belgium has been criticized several times by the European Court of Human Rights for not properly treating mentally ill prisoners. The government acceptance of the euthanasia of a convicted murderer was seen as a failure of the mental health system and the justice system. This case provides convincing evidence of a slippery slope to terminating those who are a financial burden to the state.
A recent study of advanced cancer patients in the Netherlands found the rate of unbearable suffering was the same in those who requested PAD and those who did not. It would seem to point out that unbearable suffering is not the reason for requesting PAD. It is suffering or the fear of suffering that has been stressed in the media and court challenges in Canada. It is humane to be in favor of relieving suffering, but no study has confirmed what people understand about the issues. A 2007 population survey of 991 people reported that two of three adults in Quebec thought euthanasia was synonymous with treatment withdrawal, with those confusing the terms being more favorably inclined toward euthanasia. Could it be that Canadians, not aware of their options for care and decision making at the end of life, support PAD in the belief that it is the only option to end suffering? A study of 728 patients with chronic disease showed that almost one in three patients were not aware they could refuse a treatment and one in two patients were not aware they could withdraw from a treatment.
Consent to MAID must be given freely without undue coercion. I have personally witnessed patients who, having previously restricted their children’s access to their bank accounts due to concerns about stealing, readily hand over the bank card and PIN when they are ill. The desire to not be a burden to family (and to not be abandoned) is strong. In fact, over 40% of those receiving PAD in Oregon over the last 18 years cited being a burden as one of the reasons for choosing to end their life. Surely our society is failing people when we offer life termination to those who feel they are a burden because they are ill or disabled.
Under the new law, MAID requires informed consent—meaning the requestor understands their medical situation as well as all possible options to manage their suffering. Yet someone with advanced disease is not guaranteed to receive palliative care in this country. Many physicians rate their palliative care knowledge as inadequate and hesitate to raise goals-of-care discussions with patients. The federal government has committed to guarantee access to MAID but there is no guaranteed access to palliative care in urban, rural, and remote areas of Canada.
Proponents of PAD have pointed to Belgium as a model of how palliative care is enhanced by PAD. Access to palliative care is mandated in Belgium, but the emphasis is on access, not its actual use. A retrospective population-based study of 2013 deaths showed that only 47% of patients actually received palliative care and half of those only received palliative care services less than 10 days prior to death. Only 34% of patients with organ failure and 48% of patients dying with dementia received palliative care. A questionnaire was sent to physicians asking why patients did not receive palliative care. The most common reason was that the current care of the patient was sufficient, followed by palliative care being “not meaningful” for the patient. This was particularly the case in patients who were dying of dementia, over 85 years old, and dying at home. The authors of the study concluded that physicians were either overestimating their skills or underestimating their patients’ needs.
For now, MAID is not permitted for mature minors or cases in which mental illness is the sole underlying medical condition, and cannot be provided based on advance requests. Medical literature has repeatedly shown that anxiety and depression are related to requests for hastened death.[10-12] If PAD is allowed for individuals with a mental illness, the challenge will be to determine the extent to which the mental illness compromises decision-making capacity. While that would be a challenge even for psychiatrists, a review of the data from Benelux countries and the US showed only 4.2% to 6.7% of applicants for PAD see a psychiatrist despite a depression prevalence rate in advanced illness of approximately 20% to 33%. If advance requests for PAD are permitted in those with dementia, how will we balance this with the knowledge that people’s tolerance for disability increases as they acclimatize to their illness? People with moderate dementia rate their quality of life higher than do their family members who are influenced by their own distress.
Reporting, tracking, and review of PAD must be robust and effective. There is no duty to report, nor is it tracked on death certificates in the Netherlands. The prevalence studies rely on retrospective population studies in which physicians reply to study questionnaires. A 2005 Dutch study found that almost half of the cases of euthanasia in 2001 were not reported. In the US prescriptions for PAD are tracked, and data are more reliable. Canada needs to standardize and track the medications used in PAD. PAD must also be documented on the medical certificate of death. A national oversight body should review all PAD deaths. Canada needs to be fastidious in its safeguards.
We live in a diverse secular society that is tolerant of a multitude of values and beliefs. Because of this I have not invoked moral or religious principles that speak against PAD. In my opinion, the risks of PAD outweigh the benefits to the few people who will use this service. I believe we should be doing much more research on therapies to address suffering. Most importantly, we as a society must reclaim individuals with advanced disease, disability, mental illness, and aging as part of who we are—this is the pathway to living with dignity until life naturally ends.
1. Rosenfeld B, Pessin H, Marziliano A, et al. Does desire for hastened death change in terminally ill cancer patients? Soc Sci Med 2014;111:35-40.
2. Loggers ET, Starks H, Shannon-Dudley M, et al. Implementing a Death with Dignity Program at a comprehensive cancer centre. N Engl J Med 2013;368:1417-1424.
3. Head BA, Schapmire TJ, Earnshaw L, et al. Improving medical graduates’ training in palliative care: Advancing education and practice. Adv Med Educ Pract 2016;7:99-113.
4. BBC News. Belgian rapist Van Den Bleeken refused ‘right to die.’ 6 January 2016. Accessed 18 July 2016. www.bbc.com/news/world-europe-30699780.
5. Ruijs CD, van der Wal G, Kerkhof AJ, Onwuteaka-Philipsen BD. Unbearable suffering and requests for euthanasia prospectively studied in end-of-life cancer patients in primary care. BMC Palliat Care 2014:13:62.
6. Marcoux I, Mishara BL, Durand C. Confusion between euthanasia and other end-of-life decisions: Influences on public opinion poll results. Can J Public Health 2007;98:235-239.
7. Silveira M, DiPiero A, Gerrity MS, Feudtner C. Patient’s knowledge of options at the end of life: Ignorance in the face of death. JAMA 2000;284:2483-2488.
8. Oregon Public Health Division. Oregon Death with Dignity Act: 2015 data summary. Accessed 6 July 2016. https://public.health.oregon.gov/ProviderPartnerResources/EvaluationRese...
9. Beernaert K, Deliens L, Pardon K, et al. What are physicians’ reasons for not referring people with life-limiting illnesses to specialist palliative care services? A nationwide study. PLoS One 2015:10;e0137251.
10. Ganzini L, Goy ER, Dobscha SK. Prevalence of depression and anxiety in patients requesting physicians’ aid in dying: Cross sectional survey. BMJ 2008;337:a1682.
11. Wilson KG, Chochinov HM, McPherson CJ, et al. Desire for euthanasia or physician-assisted suicide in palliative cancer care. Health Psychol 2007;26:314-323.
12. Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000;284:2907-2911.
13. McCormack R, Flechais R. The role of psychiatrists and mental disorder in assisted dying practices around the world: A review of the legislation and official reports. Psychosomatics 2012;53:319-326.
14. Beer C, Flicker L, Horner B, et al. Factors associated with self and informant ratings of the quality of life of people with dementia living in care facilities: A cross sectional study. PLoS One 2010;5:e15621.
15. Onwuteaka-Philipsen BD, van der Heide A, Muller MT, et al. Dutch experience of monitoring euthanasia. BMJ 2005;331:691-693.
Dr Gallagher is a clinical professor in the Department of Family Practice at the University of British Columbia and a palliative medicine physician in the Department of Family and Community Medicine at Providence Health Care.
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