What is known about patient and caregiver attitudes towards physician-assisted death (PAD) in amyotrophic lateral sclerosis (ALS)?

Updated: Jan 02, 2020
  • Author: Divakara Kedlaya, MBBS; Chief Editor: Ryan O Stephenson, DO  more...
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One study looked at attitudes of patients with ALS and their primary caregivers toward physician-assisted suicide. [50] Among the patients studied, mean duration of illness was 4 years from onset of symptoms. Researchers found that 56% percent of ALS patients studied were willing to consider assisted suicide. Of these patients, 79% felt that, if physician-assisted suicide were legal, they would request a lethal prescription from a physician. Most said they probably would keep the prescription available for potential use in the future, although only 1 patient expressed readiness to request the prescription with the intent of taking it to cause death in the next month. Of the caregivers studied, 73% had attitudes toward assisted suicide similar to those of the patients, and 76% were able to predict accurately the patient's willingness to consider taking a lethal dose of medication.

Surprisingly, incidence of depression was not associated with the patient's willingness or unwillingness to consider assisted suicide. Patients who were willing to consider assisted suicide tended to be male, had more years of education, had higher scores of hopelessness, and rated their quality of life as lower than did those who opposed assisted suicide. Patients and caregivers who would consider assisted suicide were less likely to be religious on all measures.

A study conducted in Switzerland, where assisted suicide is legal, showed that a liberal legal setting does not necessarily promote the wish for assisted suicide. However, the desire to discuss assisted suicide is prevalent in ALS patients. [51]

A survey of Canadian ALS health-care providers conducted to assess attitudes concerning physician-assisted death (PAD) concluded that the majority of ALS health-care providers support the Supreme Court of Canada's 2015 decision invalidating Criminal Code provision prohibiting PAD, with most believing that patients with moderate to severe ALS with physical or emotional suffering should have the option of PAD. However, the great majority of clinicians were unwilling to directly provide PAD and believed that PAD training modules and guidelines are needed. [52]

These studies have strong implications for physicians, multidisciplinary team members, and caregivers who work closely with patients with ALS. In the first study cited above, most caregivers were able to predict whether patients would consider assisted suicide if it were offered to them. Discussing these matters with the patient and his/her primary caregiver is important. By recognizing signs of hopelessness and diminished quality of life in these patients, physicians can institute cognitive therapies and other interventions in an effort to help the patient find meaning in the future, reduce fears, and avoid focusing on the worst outcomes.

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