Exploring attitudes toward physician-assisted death in patients with life-limiting illnesses with varying experiences of palliative care: a pilot study

Physician-assisted death (PAD) is an act in which a medical doctor knowingly assists a patient in intentionally ending their own life in order to alleviate suffering [1]. In February 2015, the Supreme Court of Canada ruled that “competent adults…suffering intolerably as a result of a grievous and irremediable medical condition” have the right to PAD. The decision was unanimous and followed multiple challenges since the initial ban in 1972 [2‐5]. It was ruled that the existing law infringed upon an individual’s right to autonomy [3, 4, 6]. Bill C-14 entitled “Medical Assistance in Dying” (MAID), was introduced on April 14, 2016 in the Canadian legislature and became law on June 17, 2016 [7]. (For clarity, PAD and MAID refer to the same act, however the term MAID includes provision by either a physician or nurse practitioner and was widely adopted in the later phase of the legislative process, after our study materials had been approved and distributed. Both terms are used throughout the manuscript, PAD in discussing this particular study, and MAID in reference to it in society). Voluntary and informed requests for MAID are considered from mentally competent adults 18 years or older with serious incurable disease, illness, or disability, in an advanced state of irreversible decline toward end of life with foreseeable death. The process involves a waiting period of at least 10 days, and evaluation by two independent physicians or nurse practitioners [7]. The majority of Canadian physicians have expressed opposition to the decision [8‐10]. One poll revealed 71.5% of physicians supported the Canadian Medical Association’s policy against participating in euthanasia or PAD [8]. Another found only 44.8% favoured legalizing MAID [10]. In contrast, 78–84% of the Canadian general public supports legal access to MAID [11, 12]. With all the interest in the opinions of lawmakers, politicians, health care providers, and the general public, the absence of the opinions of Canadian patients has gone relatively unnoticed. Canadian studies found approximately two-thirds of patients with HIV/AIDS or incurable cancer supported PAD, and that 39.8% of cancer patients would consider requesting it for themselves [13‐16]. These data, however, may not accurately represent patients dying in Canada as cancer and AIDS accounted for only 29.9% and 0.1% of deaths in 2011, respectively [17].

The role of palliative care in PAD is also debated. Some believe PAD is a part of the continuum of palliative care, but 56% of palliative care physicians feel that it fundamentally contradicts the palliative care philosophy and see them as mutually exclusive [8, 9, 18]. Some advocate that it is premature to discuss PAD until palliative care is universally accessible [19]. Unfortunately, based on a 2010 Canadian Senate report, an estimated 70% of Canadians still do not have access to palliative care [8, 20]. Evidence suggests that better pain control and symptom management have not been found to consistently reduce desires for hastened death in the past [21‐23]. In Oregon, where PAD is legal, decreasing independence, loss of control, and loss of dignity were the most common concerns expressed by patients choosing PAD, and 92.2% of those who choose PAD had hospice services [24].

Given the recent legislative changes, the lack of up-to-date information on the opinions of patients, and the evolving landscape of palliative care, it is important to explore how patients with life-limiting illnesses currently view PAD to maintain a patient-centered approach. Our primary objective was to explore both general and personal attitudes toward PAD in patients with life-limiting illnesses with varying involvement of palliative care. Secondary objectives included determining whether patients are aware that PAD will be legal in Canada; whether patients are comfortable discussing their views on PAD with family, friends, or their health care providers; and which health care professionals patients would want to provide PAD.

The results of this pilot study suggest that patients with terminal illnesses generally support PAD. This finding is consistent with the general public, with 84% of participants expressing support [11, 12]. The responses of most participants remained fairly consistent over the two-week period. Results also suggest that patients with terminal illnesses will hypothetically consider PAD for themselves in the future. Hypothetical consideration of PAD was 53–60%, higher than previously reported in the literature at 39.8% [15]. Prior studies have shown that the desire for hastened death increases over time despite pain control [21, 23]. Our results, although hypothetical, suggest a similar pattern, with the desire for PAD increasing from baseline to follow-up for all three groups. These are important findings given the lack of current information on the attitudes of terminally ill patients towards PAD since the legislative changes in Canada.

A trend in the data was found for participants with new and ongoing palliative involvement to report higher levels of hypothetical consideration of PAD than participants without palliative involvement. This finding is contrary to the belief that palliative care may reduce the desire for hastened death. Possible explanations for this trend may be that patients involved with palliative care are thinking more about death, are more informed about their options, are encouraged to plan ahead, or have a higher symptom burden than non-palliative patients. Previous research suggests that depression and hopelessness are the strongest predictors of desire for hastened death [21]. Although all participants in the current study reported low levels of depression on the ESAS, the prior palliative care group reported slightly higher levels of depression at baseline and follow-up compared to the other two groups of participants, which may also contribute to this trend.

A position statement on PAD released by the American Academy of Hospice and Palliative Medicine (AAHPM) states the ending of suffering by ending life has been held as distinct from palliative care, which relieves suffering without intentionally hastening death [31]. Similarly, a position statement from the Canadian Society of Palliative Care Physicians (CSPCP) found that 80% of members oppose assisted suicide [32]. Our preliminary findings, however, suggest that terminally ill patients may not view PAD and palliative care as mutually exclusive and will hypothetically consider PAD while receiving palliative care. This should not diminish the importance of palliative care and it should not be viewed as a failure of palliative care. Rather, this may indicate a need for a patient-centred approach to integrate PAD into the provision of palliative care in this evolving Canadian landscape of end-of-life care.

The current pilot found that most participants with terminal illnesses are comfortable discussing PAD with their family and health care providers. It is however important to note that although discussions surrounding death and dying are always difficult, there may be a difference in comfort level between patients that are considering PAD and patients that are not considering it. Lastly, most participants feel that family doctors, oncologists, and internists should provide PAD, though a number of other health care professionals would also be acceptable providers. Results showed equal preference for palliative care doctors and specialists such as internists and oncologists to provide this service. This is interesting given that a recent poll of the CSPCP’s members found that 75% of respondents stated that PAD should not be provided by palliative care physicians [9]. This dichotomy of opinions between patient and provider warrants further exploration.

This pilot study suggests that terminally ill patients with and without palliative care equally support the provision of PAD and report hypothetical considerations of PAD that increase over time. A trend emerged that suggests patients with prior and ongoing palliative care and new palliative consultation are more likely to consider PAD for themselves in the future than patients without palliative involvement. These findings serve as a basis for future study.

Despite a widely supported call for a national palliative care strategy, the delivery of palliative care continues to be a challenge across Canada, given the aging population, the increasing burden of chronic diseases, the scarcity of resources, and the evolving expectations of the population [9, 20, 33, 34]. Palliative care specialists cannot be involved with every terminally ill patient, or every request for MAID, but will be pivotal in supporting and empowering other health professionals to engage in complex discussions regarding goals of care, and to help ensure that quality of life, symptom management and end-of-life care are optimized. Our findings suggest that palliative care and MAID may not be viewed as mutually exclusive alternatives to terminally ill patients, suggesting that both must be equally accessible to truly provide patient-centred care.