Advance Directives & Dementia

You may have seen Still Alice, the feature film in which Julianne Moore plays a woman suffering from early onset Alzheimer’s. If your family has been dealing with Alzheimer's Disease for a while, you may also have seen a screening of The Genius of Marian, a powerful documentary of Pam White and her family as she moves through the disease. This film is often screened by various Massachusetts Councils on Aging; Concord and Newton Massachusetts have both provided recent screenings. We are very lucky to have many towns with a Council on Aging sponsoring such a high-quality film locally. If Alzheimer’s is a concern for your family, this film is a must-see.

Still Alice includes a scene in which Moore’s character, suffering moderate Alzheimer’s, tries to follow written instructions she had written while competent. The instructions will lead her to suicide by swallowing a lethal dose of pills. The scene is dramatic, heart-rending, and almost humorous, but it speaks to an issue medical and legal ethicists have begun to treat seriously now: whether and how a currently competent person can leave advance directives to end life if she has lost capacity to reason and speak independently for her personal interests.

This topic has begun to appear in public discussion more often. Blogger John Schappi opened a 2015 post, “As an old man (86 next month) with Parkinson's, I want to maintain control over the way I die.” He proceeds to discuss his desire to have all the good days he can, but not to be a burden to his family when those days have passed. Because dementia often attends Parkinsons, he tries to grapple with how to make his needs known in the event his ability to reason and communicate decline.

The subject was also addressed at about the same time in a New York Times’ excellent The New Old Age column. It begins here in Massachusetts, with the story of a Dedham lawyer who has established a 10-point list of conditions to watch for; his advance directives stipulate that should three of those persist over a period of weeks (e.g., inability to recognize loved ones), his health care proxy, currently his wife, is to withhold “ordinary means of nutrition and hydration.” In most cases of voluntarily stopping eating and drinking, the patient is given sedatives and kept as comfortable as possible during his remaining days. Still, advanced directives refusing CPR, ventilators, and “heroic measures” are common, but instructing others not to feed you is not the same as rejecting high-tech life-sustaining treatment.

Physician assisted suicide by any means remains illegal in Massachusetts. Readers may remember the Commonwealth’s 2012 “Death with Dignity” ballot measure, which narrowly failed, 49% to 51%. And in those states that allow physician assisted suicide, the patient must be legally competent to make decisions. Even in those states, this provision eliminates this option for people who suffer from Alzheimer’s and related dementias.

Ethically, the terrain is tricky.  People should never be made to think that their lives have no meaning simply because they suffer, require care from family, or face difficult circumstances.   Nor should loved ones feel pressured to let go if the presence of a now-incompetent family member provides comfort. On the other hand, many believe that a terminally ill patient who is suffering and competent should be able to choose not to be kept alive. These personal judgments cannot be overridden.

What do we make, then, of the case of a Canadian nurse who clearly and repeatedly specified that, should she become incapacitated, she wanted to be comfortably sedated and wanted food and drink to be withheld while nature took its course? She later suffered from advanced Alzheimers, so her husband and daughter tried to follow her directives. They were thwarted by the facility where she resided, and the case wound up in court.

Once again, we find ourselves in new territory. Demographic trends of approaching decades suggest that this topic will a matter of discussion for years to come. Its challenges notwithstanding, this presents another opportunity for families to speak with loved ones well in advance to be sure that, as much as possible, we understand the desires of our loved ones. Making these decisions together and traveling the road knowing we are, at a minimum, aware of our loved ones preferences will help to make the passage as positive an experience as possible.