Exploring a legal and ethical gray area for people with dementia
Many of the legal and ethical options for refusing unwanted interventions are not available to people with dementia because they lack decision-making capacity. But one way for these people to ensure that they do not live for years with severe dementia is to use an advance directive to instruct caregivers to stop giving them food and water by mouth. This is an ethical and legal gray area explored in commentaries and a case study in the Hastings Center Report.
People with decision-making capacity have the legal right to refuse treatment of any kind and to voluntarily stop eating and drinking. In states where physician aid in dying is legal, people with decision-making capacity who are terminally ill can ask a doctor to help them end their lives. For people who lose decision-making capacity, an advance directive can express their wish to refuse life support, including a feeding tube. But it is questionable whether there is a legal right to use an advance directive to refuse food and water given by mouth when a person can still swallow but lacks decision-making capacity.
In the lead article in the May-June issue, Paul T. Menzel and M. Colette Chandler-Cramer express support for such directives and say that they "are arguably already legal" because they follow logically from the legal rights to refuse life support and to voluntarily stop eating and drinking. Menzel, a professor of philosophy emeritus at Pacific Lutheran University, and Chandler-Cramer, a retired physician assistant and a member of a hospital hospice team in Washington State, propose guidelines for implementing such directives so as to guard against misunderstanding and abuse, and they offer a sample advance directive.
A commentary by Rebecca Dresser calls the proposal "both appealing and unsettling." Dresser, who is Daniel Noyes Kirby Professor of Law and professor of ethics in medicine at Washington University in St. Louis, writes that this use of an advance directive "is appealing because it offers some relief to people seeking to avoid the prolonged decline and extreme incapacity they have witnessed in relatives and friends with advanced dementia," but she cautions that it fails to protect incompetent patients.
A case study with commentaries concerns a 75-year-old woman with Alzheimer's disease who, in discussions with her husband, "was adamant about not coming to the point where she would be unable to recognize herself, her husband, or their son and daughter." She made a plan to voluntarily stop eating and drinking on a specific date. "She asked her husband to promise, should she ever waver and request nutrition or hydration, to remind her of the reasons she had chosen for pursuing this path," said the case study. However, after voluntarily stopping eating and drinking, the women asked her caregivers – friends and hired professionals – for food and drink. While she sometimes exhibited decision-making capacity, she often did not recall having chosen VSED.
The commentaries explore whether health care workers can follow a family member's request to honor their loved one's VSED plan when the patient's advanced dementia makes disciplined voluntary action difficult. The commentaries are written by Ross Fewing, director of ethics at St. Joseph Medical Center in the PeaceHealth System in the Pacific Northwest; Timothy W. Kirk, an assistant professor of philosophy at City University of New York, York College; and Alan Meisel, the Dickie, McCamey and Chilcote Professor of Bioethics and professor of law at the University of Pittsburgh Schools of Medicine and Law.