Jan 28, 2015

A Can of Worms - Complexities of Choosing an End of Life Strategy for Dementia

By Pamela R. Kelley
Alzheimer's Reading Room

End of Life Alzheimer's Reading Room

Pamela R. Kelley is a long time reader and writer for the Alzheimer's Reading Room. She also cared for her mother, Audrey, who lived with Alzheimer's disease. She described her journey for us with great passion and love. For more of her articles see the links below.

Pamela among other things is an attorney and a former caregiver, her insight is always worth considering. In this article she takes on an issue that is facing most of us; and, is certain to become an major issue as our population ages, and as more and more people confront the idea of living a life with dementia.

Pamela addresses the complex issue of what preparations we might be making for our own end of life. She also takes on the issue of VSED - voluntary stopping eating and drinking for those with advanced dementia.

This is sure to be controversial in the Alzheimer's and dementia communities.

After reading this article please share it widely. As always you are welcome to enter your comments below, and you might ask others to read and comment.

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We learn to be temperate in our judgments and expectations when we’ve been caring for a loved one with Alzheimer’s or related dementias. We know that what seemed out of reach to them one day may be achievable on another.

We learn not to prematurely write off hope for good days.

Often, we’re surprised when we discover ourselves connecting happily in ways that we might have thought were beyond our loved one’s ability just weeks before.

I think it’s having learned to live with this “wait and see” hopefulness that helped me hit my stride as my mother’s care partner.

Our years together were not unrelentingly bleak and despairing. Far, far from it. I sometimes wonder whether those who haven’t had the privilege of taking a place in the front row in Alzheimer’s World are capable of imagining the truth in that. Our happiness in one another was different, assuredly. But that happiness was no less true because it was different.

This leads me to a very difficult subject: advance directives and VSED (voluntary stopping eating and drinking) for those with advanced dementias.

This is separate and apart from end-of-life decisions relating to the use of feeding or hydration tubes.

Instead, VSED is about exactly what it says – stopping the ordinary eating and drinking that sustains us in life. 

Recently, a column - Complexities of Choosing an End Game for Dementia - in the New York Times described the efforts of a retired lawyer, Jerome Medalie, to craft his own advance directive to allow his health care proxy to withhold food and drink if he developed dementia and certain conditions persisted for more than several weeks. (VSED-by-proxy) He explained his determination to allow for death with dignity, especially if what’s killing him is Alzheimer’s Disease.

The columnist noted that “ethicists, lawyers and older adults themselves have begun a quiet debate about whether people who develop dementia can use VSED to end their lives by including such instructions in an advance directive.” Already, strong voices - Let’s Force Doctors to Starve Alzheimer’s Patients! - in condemnation have emerged.

I don’t think we need a quiet debate about this – I think we need to put this one right out front, and we should talk about it in normal tones. 

How many of you have heard someone say, with reference to your loved one with Alzheimer’s, “shoot me first”. I have. I've cringed and bitten my lip. I've chalked it up to fear and ignorance. Now I’m beginning to realize the extent of risk inherent in a world that segregates those suffering from dementia. It makes it hard for some to imagine that those afflicted have lives worth living.

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The column didn’t itemize the conditions that Mr. Medalie requires his health care proxy to look for, the presence of three or more of which when persisting for several weeks are the trigger for his instruction to withhold food and drink. They weren't hard to track down, however:
  1. I cannot recognize my loved ones;
  2. I cannot remember the names of my spouse or one or more of my children;
  3. I cannot articulate coherent thoughts and sentences;
  4. I cannot read books with understanding and enjoyment;
  5. I cannot watch or listen to television or other media with understanding and enjoyment;
  6. I cannot intelligently discuss an issue with intellectual proportions;
  7. I have forgotten when or how to eat or drink without assistance;
  8. I have forgotten when or how to perform personal hygiene on a regular basis without assistance;
  9. I remain uncommunicative for long periods of time;
  10. I babble incoherently or curse erratically or without apparent provocation exhibit anger, antisocial or other bizarre behavior.

Now I understand that this is Mr. Medalie’s list that signifies when, for himself only, he wants no more of life. I applaud Mr. Medalie for having given this the thought that he clearly has, for opening the dialogue within his family, and for allowing his example to be shared right there on the pages of the New York Times. This is the kind of end-of-life decision-making process that warrants attention from all of us.

I looked through Mr. Medalie’s list, and imagined applying it as if my own mother had written it for me. Maybe it’s because her death is recent. Maybe it’s because I’m also a lawyer by training, used to parsing words.

But I would have had real difficulty with this list.

What does it mean to “recognize”? Is the use of specific words, like names, a fair measure to use when speech aphasia appears? Does “reading” include something the pleasure Mom took in paging picture books of puppies? Can we conceive of what “understanding and enjoyment” is available to one whose speech is compromised?

The responsibility put on one who would have to withhold food or drink would be tremendous. Imagine if the incompetent loved one met the criteria and yet derived obvious pleasure in favorite foods and drink.

My mother’s advance directive did not contain any mention of dementia or Alzheimer’s Disease. It was clear in terms of my instructions if she had been in a persistent vegetative state. But there were no instructions about withholding hydration and nutrition, about not picking up the spoon, lifting the cup or positioning the straw. She died because she stopped eating and drinking; she could no longer do those things.

After sitting with the idea of “VSED-by-proxy” for a few days now, I intend to discuss this with those whom I’ve designated my proxies. I think that my experience in seeing my mother through to her own natural death will help me consider end-of-life instructions relevant to dementia that do not put too much weight to intellectual measures and too little weight on the fullness of my heart.

We, who know our own truths about living with loved ones with dementia, should be having this conversation with utter respect for the experiences of those that are different from ours. Yet we should participate in this conversation with confidence that what we've learned is an important part of the discussion. Please, share your thoughts. Make your wishes, your values and your expectations known.

More Article by Pamela Kelley - click here for a more complete list

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