Alzheimer’s and Bioethics

A woman asks to die when she no longer recognizes her family

Illustration by Ashley MacKenzie
Illustration by Ashley MacKenzie

On March 3, the British Columbia Court of Appeal released its decision in Bentley v. Maplewood Seniors Care Society—a case involving eighty-two-year-old Alzheimer’s patient Margaret Bentley. The court ruled against her family, who had argued that the terms of Bentley’s 1991 “Statement of Wishes” required caregivers to withhold food so that she could die of starvation. The text that follows is adapted from a clinical ethics consultation requested by the supervising medical authorities.

Margaret Bentley is described by family as having lived an extremely vibrant life. She was a talented artist and enjoyed gardening and working with horses. She also worked as a registered nurse. After her diagnosis with Alzheimer’s disease, Mrs. Bentley could predict her illness trajectory, and took care to indicate her wishes verbally and in at least two written documents.

One of the documents describing her wishes contains a request for euthanasia at such time as she is no longer able to recognize her family. It further states that she be allowed to die and not be kept alive by artificial means or “heroic measures.” While there is some discrepancy between the documents about Mrs. Bentley’s wishes for feeding (refusing “nourishment and hydration” in one and accepting “basic care” in another), Mrs. Bentley’s family believes that Mrs. Bentley would not, in her current mental and physical state, consent to continued feeding if she were able to. Mrs. Bentley’s family requested as early as August 2011 that her living will be honoured, and that her feedings be discontinued within a hospice palliative-care setting. The family is clear that she would not want to live in this current condition.

Mrs. Bentley currently resides in residential care at Maplewood House in Abbotsford, British Columbia, and is fully dependent on others for all activities of daily living. She is alert and awake, but does not appear to respond to voices. When offered food by prompting her lower lip with a spoon, Mrs. Bentley actively participates in eating by opening her mouth to receive food, chewing, and swallowing. She indicates that she is finished eating when she stops opening her mouth.

Mrs. Bentley’s family interprets her behaviours while eating as basic and instinctive, and not indicative of desires on her part. In contrast, those who feed Mrs. Bentley interpret this as an indication that Mrs. Bentley wishes to be fed. Further, staff see voluntary feeding by mouth as part of basic care that they have a fundamental duty to provide. In part due to this perception, many members of the care team feel it would be inappropriate to withdraw food from Mrs. Bentley.

Canadian law does not permit euthanasia, and this request was denied on that basis alone. The legal challenge at issue was about nourishments and liquids. In general, receiving nutrition by mouth, and not through artificial means such as a tube, falls within basic care and not “heroic” and/or “extraordinary” measures.

The desire to act on a loved one’s wishes is strong, and is something that must be respected and commended. This duty is not unlimited, however, and there will sometimes be legal and ethical circumstances that prevent families and care teams from meaningfully carrying out a request. In Mrs. Bentley’s case, the request to discontinue voluntary feeding by mouth challenges some fundamentally held values—and more decisively, is not consistent with current law in Canada.

Katherine Duthie, M. A.
Leader, Clinical Ethics Consultation
Fraser Health Authority, Ethics Services
Surrey, BC

This appeared in the May 2015 issue.

The Walrus
Ashley Mackenzie
Ashley Mackenzie ( counts the New York Times, Scientific American, and The New Republic among her clients.