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.
In this case, the family is of one mind. The directive helps them to know what Margot wanted so that they can advocate for her wishes. Margot and her family most likely had conversations before her Alzheimer’s disease took away her ability to communicate and reason. Her document is 24 years old, which makes it easier to claim that it may not have represented her more recent wishes. People with Alzheimer’s undergo dramatic personality changes. In short, they become different people. Should decisions about current Margot be made based on a document written by a previous version of Margot? Could the previous persona have envisioned a life with Alzheimer’s?
As a person with advanced Alzheimer’s, is Margot capable of giving consent (or refusal)? The home argues that her eating when prodded with a spoon is consent. However, she lacks the cognitive capacity to consent. Her actions are an autonomic response, not a reasoned, considered action. If she refused the spoon, would the home take that as an acceptable refusal or would they require forced feedings or a feeding tube? There is a bias in medicine and health care to err on the side of life, so most likely her not eating would lead to medical feeding, not being viewed as informed refusal. You can’t have it both ways.
Is an advance directive only in regards to medical care? Might it include having your wishes honored or non-medical interests? This raises the question of what is medical care? Margot is unable to eat on her own. She requires an intervention to do so. Does it matter if the spoon is held by a licensed health professional or could a lay volunteer hold it? Is it medical care in one case but not in the other?
In recent years, the providing of artificial (i.e. medically provided) nutrition and hydration at the end of life has become particularly contentious. Since the case of Terri Schiavo there have been movements in state legislatures to require artificial nutrition and hydration as the default action unless a directive specifically states “no artificial nutrition and hydration.” Although as this case points out, there can be disagreement on what is “artificial” or “medically mediated” feeding.
Voluntary cessation of eating and drinking (VSED) has been promoted as a safe, humane, and legal way for a competent and capacitated person to end his or her life. This can be difficult on the family since the process takes weeks. Also consider that in Western societies, food represents love and caring. To reject food is often seen as a rejection of love and relationships. Margot is neither competent nor capacitated. Should she be denied this option if her surrogate decision-maker believes it is what she would have wanted? Should it be possible to have an advance VSED directive?
Some people view voluntary cessation as a form of suicide. A complication in this particular case is that the Canadian Supreme Court recently ruled to permit medically-assisted suicide. Though this ruling will not take effect until next year, it may have bearing on this case. One significant concern is that current-Margot cannot consent, nor can she refuse. We only know what she has written previously. Thus assisted suicide as an expression of current autonomy is not possible in her case.
Many prefer having higher bars for passively letting a life end, viewing it as neglect of people with disabilities, or a passive form euthanasia. For this select group, not acting is the same as pulling the cord. Not giving Margot the spoon would be the equivalent of murder. This is an extreme view which needs to be mentioned.
The family has no further legal options. Margot will continue to exist as long as she accepts the spoon. If she refused it, the most likely outcome would be forced medical feeding. How can taking the spoon be consent but refusing the spoon be interpreted is incapable of making a choice. In the meantime, a person’s clearly stated wishes are ignored because of a hospital’s imposition of its morals. This is a story of power—of a large agency with it and a family and patient without it.
This story also teaches that it’s important to keep your advance directives current and to be specific in regards to controversial steps like ending nutrition and hydration whether medically administered or done with a spoon. I generally suggest that people review and renew their advance directives every five years. If only we could ask Margot what she wants, whether she restricted her statement to meaning feeding tubes versus spoon feeding. Unfortunately the correct interpretation can never be known. This represents either a new line to be added to advance directives or a new limitation of these documents.