Lori Seller, Marie Eve-Bouthillier, Veronique Fraser
Background Medical aid in dying (MAiD) was introduced in Quebec in 2015. Quebec clinical guidelines recommend that MAiD be approached as a last resort when other care options are insufficient; however, the law sets no such requirement. To date, little is known about when and how requests for MAiD are situated in the broader context of decision-making in end-of-life care; the timing of MAiD raises potential ethical issues.
Methods A retrospective chart review of all MAiD requests between December 2015 and June 2017 at two Quebec hospitals and one long-term care centre was conducted to explore the relationship between routine end-of-life care practices and the timing of MAiD requests.
Results Of 80 patients requesting MAiD, 54% (43) received the intervention. The median number of days between the request for MAiD and the patient’s death was 6 days. The majority of palliative care consults (32%) came less than 7 days prior to the MAiD request and in another 25% of cases occurred the day of or after MAiD was requested. 35% of patients had no level of intervention form, or it was documented as 1 or 2 (prolongation of life remains a priority) at the time of the MAiD request and 19% were receiving life-prolonging interventions.
Interpretation We highlight ethical considerations relating to the timing of MAiD requests within the broader context of end-of-life care. Whether or not MAiD is conceptualised as morally distinct from other end-of-life options is likely to influence clinicians’ approach to requests for MAiD as well as the ethical importance of our findings. We suggest that in the wake of the 2015 legislation, requests for MAiD have not always appeared to come after an exploration of other options as professional practice guidelines recommend.
Since 10 December, 2015, euthanasia has been provided by physicians in Quebec under the terms of An Act Respecting End of Life Care (ARELC). Health and social services agencies established by the government throughout the province are state agencies responsible for the delivery and coordination of health care in the province administrative regions. These are called Centres intégrés de santé et de services sociaux (CISSS) and Centres intégrés universitaires de santé et de services sociaux [CIUSSS). Some administrative regions (like Montreal and the Quebec City region) have more than one CISSS or CIUSSS.
These agencies are responsible for the delivery of euthanasia. For two years beginning 10 December, 2015, they were required to make reports twice yearly to a commission established by the law to monitor the administration of euthanasia (the Commission sur les soins de fin de vie) and publish them on their websites. These twice-yearly reports will apparently cease to be published after that time. The Commission draws from these and other reports to make its required summary of activity to the legislature (National Assembly).
The Project has compiled the statistics provided in these reports from10 December, 2015 to 10 December, 2017. The compilation includes tables and charts, some of which are reproduced below.
Note that, in some cases, the number of patients lethally infused is higher than the number of requests because euthanasia was provided in response to a request made in the previous reporting period. In addition, not all euthanasia deaths are captured in these reports, as some regions with low populations do not publish reports, and euthanasia may be provided by private entities that are not subject to the statutory twice-yearly reporting requirement.
The number of euthanasia requests made weekly in the province increased from about 14 in 2016 to about 23 in 2017. In Montérégie the number of requests weekly doubled; they more than tripled in Bas-Saint-Laurent.
Euthanasia was provided about 9 times weekly in the province during 2016 and 14 times weekly in 2017.
The number of euthanasia deaths increased by about 67% from 454 in 2016 to 757 in 2017. This is about 1.1% of deaths from all causes, a rate not reached by Belgium for 9 years after legalization.
In Outaouais the number of euthanasia deaths almost doubled (11 to 21)
In Chaudière-Appalaches the number more than doubled (18 to 40)
The number of euthanaia deaths more than tripled in Saguenay-Lac-Staint-Jean (6 to 19)
The number of euthanasia deaths quadrupled in Côte-Nord (2 to 8), and more than quadrupled in Abitibi-Témiscamingue (4 to 18).
434 requests for euthanasia were not acted upon in 2017, up from 263 in 2016. However, the percentage of all requests not acted upon remained constant at 37%.
In 11% of the cases the patient died of natural causes before euthanasia was provided, up from 9% in 2016.
About 8% of the patients did not qualify for the procedure, down from 11% in 2016.
Marked increases in rates of continuous palliative sedation occurred in a couple of regions, notably Laurentides (a 2017 reate almost six times that of 2016)
An overwhelming majority of registered nurses working in Quebec nursing homes support euthanasia for dementia patients who have left a living will, researchers from Canada and the Netherlands. In an article in the journal Geriatric Nursing.
Euthanasia is legal in Canada, but only for patients who are competent, even if they had expressed a request for “medical aid in dying” in their lucid moments. However, this restriction is under pressure. After a man killed his demented wife, the Quebec Minister of Health and Social Services asked experts to study whether MAiD could be provided for patients with advance directives.
Although only doctors are able to euthanize patients, the researchers point out that “Given their unique experience and expertise, nurses’ voice must be taken into account in deciding whether or not to modify the current legislation to give incompetent patients access to MAiD.”
Five hundred and fourteen nurses were surveyed; 219 responded. Of these, “83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably. A similar proportion (83%) were in favor of extending medical aid in dying to incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity.”
Just as interesting as the nurses’ attitudes towards incompetent patients was their feelings about how they would like to be treated themselves should they become demented. If diagnosed with Alzheimer’s, 79% said that they would make a formal request to die. If a love-ones were diagnosed, 65% would call a doctor to euthanise them (provided they had left a request).
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G. Bravo, C. Rodrigue, M. Arcand, J. Downie, M.-F. Dubois, S. Kaasalaine, C.M. Hertogh,S. Pautex, L. Van den Block
We conducted a survey in a random sample of 514 Quebec nurses caring for the elderly to assess their attitudes towards extending medical aid in dying to incompetent patients and to explore associated factors. Attitudes were measured using clinical vignettes featuring a hypothetical patient with Alzheimer disease. Vignettes varied according to the stage of the disease (advanced or terminal) and the presence or absence of a written request. Of the 291 respondents, 83.5% agreed with the current legislation that allows physicians to administer aid in dying to competent patients who are at the end of life and suffer unbearably. A similar proportion (83%, p = 0.871) were in favor of extending medical aid in dying to incompetent patients who are at the terminal stage of Alzheimer disease, show signs of distress, and have made a written request before losing capacity.
Available statistics indicate that Quebec is on track to reach euthanasia rates after two years that correspond to Belgian rates after seven to eight years (i.e., per 100,000 population and as a percentage of deaths from all causes).
Not all Quebec euthanasia statistics have been made public. However, the following points appear to be of interest:
Almost 20 requests for euthanasia were made weekly in the province in the first half of 2017, slightly higher than the last half of 2016.
The percentage of requests that did not result in euthanasia increased slightly from about 37% to 40%
Increases in this category, when reported, were attributed mainly to patients becoming incompetent, dying or withdrawing their requests.
During the interview that led to the publication of the article, the Project Administrator expressed concern that a significant increase in the volume of cases in the last half of 2016 could increase pressure on physicians and other health care workers who do not wish to participate in the procedure. Such pressure was generated across Canada by the exponential increase in the number of abortions following liberalization of the abortion law in 1969, from under 300 in eleven years to over 11,000 in the first year after the change in the law. The number of euthanasia and assisted suicide cases in the first year of legalization seems unlikely to exceed 20% of that number, but this is still sufficient to warrant concern about pressure on objecting health care workers.
The statistical returns disclose some wide differences between different regions or reporting agencies, and sometimes between reporting agencies in the same administrative region. For example: the number of euthanasia requests per 100,000 population is reported to be much higher in the Quebec City area than in the rest of the province, while the number of euthanasia requests per 100,000 palliative patients reported in Lanaudiere and Laval is much higher than in the Montreal Region. Euthanasia is reported to be provided per 100,000 population in the Quebec City area at a rate three times that of Montreal.
The Administrator explained that the statistics were primarily useful in raising important questions about the reasons for such variations or trends, such as differences in the quality or accessibility of palliative care or the nature of patient illnesses.
A consensus is emerging among Quebec parliamentarians to launch a public debate on the appropriateness of legalizing medically assisted suicide for persons unable to give informed consent, such as patients suffering from Alzheimer’s disease.
Without making any commitment, Health Minister Gaétan Barrette opened the door on Thursday for a public debate after calls by the two main opposition parties, the Parti Québécois and the Coalition avenir Québec. . . [Full text]
QUEBEC — The McGill University Health Centre has repealed its policy exempting the palliative care unit from offering medical aid to die, said Health Minister Gaétan Barrette on Wednesday.
“This morning, I met with Mr. (Normand) Rinfret and he told me that as of this very moment, the policy has been repealed,” Barrette said, referring to the MUHC’s executive director. “As we speak today, no patient can be transferred out of the palliative care unit at the MUHC, and medical aid in dying will be made available in the unit itself.” . . . [Full text]
QUEBEC — The McGill University Health Centre is being forced to backtrack on a policy that exempts its palliative care unit from helping patients die.
Health Minister Gaétan Barrette issued a strongly worded letter to the MUHC’s director general Wednesday, urging him to change the policy, which he says does not respect the law.
“To say that medical aid to die will not be offered in a particular unit … poses a serious problem when it comes to respecting patients’ lawful right to receive end-of-life care,” the minister wrote. . . [Full text]
The McGill University Health Centre said Monday it will change its policy and allow medically assisted dying in its palliative care unit after coming under fire from Health Minister Gaétan Barrette last week.
The uproar came about after a patient at the Glen site had to be transferred out of the palliative care unit to receive medical aid in dying in April.
Barrette sent a letter to the MUHC’s director general last week, asking the hospital network to change its policy, because it does not respect the new law. . . [Full text]