Can An Advance Directive Ever Justify Cessation of Eating in an Alzheimer’s Patient?

by Craig Klugman, Ph.D.

Margot Bentley did what end-of-life care advocates say we should all do—she completed an advance directive. She wrote hers in 1991 when she was working as a nurse and stated that she did not resuscitation, surgery, respiratory support, or nutrition and hydration.

Today she is at the center of a legal battle in Canada. At age 83, she has suffered from Alzheimer’s disease for the last 16 years. She is non-responsive. Her family wants to follow her wishes by stopping feeding and taking her home to die comfortably. The long-term care facility where she resides said no and put an order in her chart to call police if the family tried to remove her.

The crux of the conflict: When a spoon is placed by her mouth, she will eat. The home views this as the patient consenting to eat.

The family took the home to court. The judge ruled that spoon feeding is not medical care and therefore is not covered by the advance directive. A directive is supposed to clear the air and provide guidance. Margot’s case offers another concern: They may be interpreted different by the family, the health care providers, and the courts.

Advance directives are limited documents. They cannot consider every possible circumstance and condition in which a person may find him or herself in the future. The nuances of medical decisions can be difficult to understand. They often cannot be located when needed. In most jurisdictions, there is no penalty if they are ignored. Often family members cannot agree on what should be done for a patient.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.