Medical Decision Makers for the Demented

Is alignment on end of life values and preferences critical?

I have a whole new perspective on selecting a medical decision maker. I navigated that journey for both my parents and my husband, but looking at it now feels strangely uncomfortable.

You see I recently found out that I am at best, predisposed to getting Alzheimer’s Disease and at worst, already have “preclinical” Alzheimer’s Disease by a recent blood test. I’ll just say there is still a lot of space between so-called biological diagnosis by these newer blood tests than clinical manifestation of Alzheimer’s so even though this was a shock, I am not in a panic over it.

However, I have thought a lot about the role of the medical decision maker now, where before it was just one of a number of things I did to check off boxes. For the longest time it was my husband who died two years ago, and the second name was my best friend who is 75 years old with a husband with significant medical issues who lives three thousand miles away. Those two people were/are the humans that know me best. They are also the two people who thought most like me on all things related to health care, my husband being a doctor and my best friend being a nurse.

I have three children. None of them are health care insiders. The eldest is currently my durable power of attorney.

I had a recent conversation with him about this possibility that I might get Alzheimer’s Disease. He is someone who has lost a lot of friends, at least two to suicide. He is also the one that my husband and I lived with the last few years of his journey through advancing dementia. He has seen it up close just like me. I told him, “I’m not doing that.”

Is it critical for the person you designate to make decisions for you to have the same values and preferences around end of life care?

It’s an interesting question. I do a lot of work with dementia-specific health care directives. It is not unusual for a candidate to be someone’s decision maker to say no when their values do not align with the patient. I recently had this experience. A lady in her mid eighties with an Alzheimer’s diagnosis wants to continue with aggressive care. Her significant other who is financial durable power of attorney refused the medical decision maker role, saying he could not do it because he does not “believe in that.”

Right now in the U.S. medical aid in dying or MAID—which we used to call Death with Dignity—does not cover Alzheimer’s patient, but my career in oncology saw many patients take this route when quality of life was dreadful as their cancer advanced toward the end.

I’m not saying I would make that choice but I am saying I need someone who would support my decision if I wanted to stop anything that would prolong my life once in the advanced stages. The reason I have a different perspective of course is because my husband did not want any life prolonging care after the moderate stage of Alzheimer’s and I found myself terribly conflicted because I DID NOT WANT HIM TO DIE.

In retrospect, of course I did not want him to die. He was the love of my life and I would have gone to the ends of the earth to find a cure there is no cure and as a caregiver you have no control. I worked through it and followed his wishes but it was agonizing.

I have recently redone my health care directive, making it crystal clear my preferences. My eldest and I have some more discussion ahead of us and I’m going to redo a video statement about what is most important to me if I should be diagnosed with Alzheimer’s Disease.

Think about doing that.