Abstract
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Nuland does not recount whether his grandmother ultimately died at home or in hospital, but she died in 1949, when home deaths in America were decreasing but still relatively common. Hospital deaths continued to increase in the United States to a high of >50% in the 1970s and 80s, spurring on the hospice movement. More recently there has been a decrease in hospital deaths in the United States, from 33% in 2000 to 20% in 2015; at the same time, deaths in a home or community setting increased from 31% to 40%. 2 Although this move from hospital to home as the place of death is welcome, it must be contextualized in terms of patients' preferences and circumstances, and how these may change in the months and weeks leading up to their death.
In this issue of the Journal of Palliative Medicine, three articles provide accounts of the actual or desired “where” and/or “how” of dying. Liang and colleagues conducted a cross-sectional survey of 1400 residents of Shanghai, China, 200 of whom had lost their only child. There were marked differences in end-of-life care preferences: those who lost their only child were most likely to prefer care in a specialized inpatient palliative care setting, whereas those who still had children (whether or not they lived with them) were most likely to prefer care at home by their family. Those with higher income and those who owned properties were also more likely to desire care by their family at home. These results illustrate well that people's so-called “choices” are based on their financial and social circumstances. A home death is attractive in theory, but not if care at home is insufficient and unaffordable.
In another article in this issue, Qureshi and colleagues describe trajectories in place of care in the last two weeks of life using administrative health data in Ontario, Canada. Sixty-one percent of all decedents died in hospital settings—more than twice the rate previously reported in the United States—but only 29% were using hospital-based care two weeks before death, with hospital care more than doubling during the last two weeks of life. Although hospital-based care increased for all disease cohorts in the last two weeks of life, patients with organ failure were the largest users of acute hospital care; the cohort containing mainly patients with cancer was the largest user of acute care that included palliative care treatment, as well as using the most home care services. Although the study by Qureshi and colleagues does not assess why transitions in care might have occurred, some light may be shed on this issue by a recent analysis of transitions from community to hospital as place of death in patients aged 75 or older. The latter study found that such transitions were less likely if end-of-life preferences had been discussed in advance with a healthcare professional and if there was a key healthcare professional who could be relied on to coordinate care. 3
In a third article in this issue, Wales and colleagues provide a retrospective review of the first year of experience with Medical Assistance in Dying (MAiD) at the Temmy Latner Centre for Palliative Care (TLCPC), a home palliative care program in Toronto, Canada. MAiD was declared legal in Canada in 2016, and healthcare organizations were left to develop their own policies and processes in this regard. Of the 21 physicians working at the TLCPC, 10 are willing to make assessments for MAiD eligibility but are unwilling to provide it, 6 are MAiD providers, and 5 are conscientious objectors. Of the 45 patients who were assessed for MAiD, 27 (60%) received it, representing 1.2% of the total patient population treated by the TLCPC at that time. Reasons for not receiving MAiD after an assessment had been made included natural death, transfer to an inpatient facility, change in decision, or lack of eligibility based on loss of capacity or death not being “reasonably foreseeable.” Of note, none were refused due to lack of the eligibility criterion of “enduring physical or psychological suffering that cannot be relieved to a condition they consider acceptable.” The median time from admission to the TLCPC to a written request for MAiD was 42 days (36 for those who received it). Although reasons for requesting MAiD were not reported, loss of autonomy was reported as the main reason for physician-assisted death (by 95%) in a previous Toronto study. 4
“Choices” around how and where to die, and whether or not these choices can be achieved, are influenced by a wide range of individual, relational, clinical, societal, and political factors. In high-income countries, studies have shown consistently that home is the preferred location of death in ideal circumstances for most people, but this ideal is usually not achieved. In a recent review, the strongest influences on care preferences expressed by older patients with advanced illness were related to concerns of and about family members and the level of support available from family as well as healthcare professionals. 5 In another review, factors associated with death at home included greater affluence, preference of place of death expressed by patients, access to home care, and family support. 6 Thus, support from family and from within the healthcare system is instrumental in determining both patients' choices for place of care and whether these choices can be actualized.
There is much less literature delineating reasons for choices of medically assisted death, their changes over time, and whether and why this choice is ultimately carried out. However, by far the most common reason cited for physician-assisted death in those who have died in this manner is loss of autonomy, 7 which is related not only to diminishing individual ability but also to the perception of being a burden on others. In my 20 years of palliative care practice, I cared for one patient who committed suicide (long before MAiD was available); in debriefing with his daughter afterward, we both remembered that he feared his wife would not be able to cope with providing end-of-life care when he needed it.
Nuland, a surgeon, was a proponent of physician-assisted dying in particular circumstances. In his chapter entitled “Accidents, Suicide and Euthanasia,” he emphasizes that with requests for euthanasia “involvement is the essence of the thing.” These requests require careful evaluation by a supportive clinician who knows the patient well and understands their values and wider family situation. As a larger number of countries and states call for the legalization of assisted death, more research into this contentious area is urgently needed, together with longitudinal research on changes in care preferences over time. In the meantime, we must be mindful that apparent “choices” about where and how to die are contingent on the fact that patients cannot choose their families, nor their social and economic circumstances. We must continue to advocate for family-based care and better home care, and enter into the patient–physician relationship with an open mind, while not taking all preferences at face value.