My thoughts about this topic began upon reading an article in the NY Times (January 19, 2015) about an 88 year old man who has made it explicit in his advance directive that when he develops Alzheimer’s disease or another form of dementia he wants to be able to refuse ordinary means of nutrition and hydration. He has listed 10 conditions that would trigger this order including “I cannot recognize my loved ones” and “I cannot articulate coherent thoughts and sentences.” He has given his wife permission to enact this order.
More recently this coincided with my viewing of the movie “Still Alice,” and the very recent article in the NY Times magazine (May 17, 2015), written by Robin Marantz Henig, regarding a woman who eventually takes her own life after receiving and living for a period of time with a diagnosis of Alzheimer’s disease.
Henig had previously reported for NPR ( http://www.npr.org/sections/health-shots/2015/02/10/382725729/if-you-have-dementia-can-you-hasten-death-as-you-wished ) on a case of a woman living in a nursing facility in Canada, whose husband and daughter requested that the home stop feeding her. She had written this directive into her living will were she to suffer “extreme mental or physical disability” with no expectation of recovery. The nursing home care staff refused the family’s request and the case ultimately went to the courts to be decided.
Each of these stories brought me back, full circle to Atul Gwande’s recent book about a physician’s view of talking to patients about death and dying. And how difficult it is for doctors to let go of the idea of curing. But in the case of Alzheimer’s or other dementias, we know that we do not have a cure. So how are we meant to think about choices and options at end-of-life?
We are in a contradictory time: on the one hand, we have taken away much of the stigma of earlier stages of dementia by developing creative early stage programs, including people in decision making early on, helping people live well and be engaged despite the disease process. Unlike other fatal or incurable diseases where we have the option “to pull the plug” or stop treatments and use palliative care practices, a person in late stage disease cannot articulate his or her choices, much less independently follow through with one’s choices. Ultimately these individuals are denied being able to live the quality of life choices they thoughtfully put in place in their advance directives. To me, this feels like another way we have stigmatized dementia.
This is a contradiction to the times we live in now with the growing Death With Dignity movement that allows a person to choose his or her way to die. Understandably it is not a common practice, but becoming more acceptable. Sandy Bem, the woman portrayed in the NY Times said she wanted “to die on my own timetable and in my own nonviolent way;” the 88 year old man understood the use of voluntarily stopping eating and drinking (VSED) as an acceptable means for him to hasten death when he considered that his quality of life was not tolerable. We each have a personal threshold of what we consider an acceptable quality of life; despite efforts at documenting them they are not or cannot be honored.
This is all so unspeakably painful and a true ethical dilemma for there is no good option. Yes, some memory care units are doing wonderful jobs of providing person-centered care offering activity programs that stimulate the senses, efforts are made to engage patients in small and meaningful ways, care is taken that patients are comfortable and mobility is encouraged. But truthfully, we have no treatments for late-stage dementia. But the specter of withdrawing nutrition and hydration to the many people now living in dementia units in long-term care facilities is unspeakable. I have read the arguments against following someone’s advance directives to withdraw treatment, including that values and preferences can change over time and people can be adaptable to extreme circumstances. But as a substitute decision maker, how is one to know or feel that we are making the best choices.
So do we honor the person that was or the person who is? Do we reach for the deeper essence of a person beyond intellectual ability or do we understand that there is a time to let go?