Death on Your Own Terms: Dementia and Choice

Terry Pratchett: "The Embuggerance is finally catching up with me."

Terry Pratchett: “The Embuggerance is finally catching up with me.”

When WC was a pup, back in the early part of the Truman Administration, death seems to have been a simpler matter: you were alive or you were dead; there was no middle ground.

The extension of lifespan and improvements to medical technology have greatly complicated that simple concept. Where there was black and white, there are now a thousand shades of gray. Or, in the more prosaic terms of the late Captain Jim Binkley, the chassis can still be in pretty good shape long after the motor has worn out. It’s a sad fact that Alzheimer’s and other forms of dementia are going to happen to many of us, depriving us of what makes us human, long before we are legally dead. Already an estimated 30 percent of those older than 85 have some form of dementia.

WC’s much-loved maternal grandfather lived in a retirement home in San Jose, California. While in the Bay area one weekend, WC drove over to San Jose, picked up his grandfather, and took him back to Candlestick Park to watch his beloved Los Angeles Dodgers thrash the San Francisco Giants. We had a nice supper afterwards. The next day, in his weekly telephone call with WC’s mother, Grandpa Mike complained that the kids never came to visit. He’d completely forgotten the previous day.  

Dealing with that problem is the last great challenge of the Baby Boomer Generation. And, so far, we’re not doing a very good job addressing this challenge, either. Sure, states like Oregon, with it’s right to suicide option, are an exception, but as a whole WC’s generation’s intense dislike for contemplating old age and mortality and the religious right’s meddling have created a legal mess.

WC’s buddy Pete was stricken with early-onset Alzheimers, possibly triggered or aggravated by far too many recreational drugs. WC would visit Pete from time to time, and each time Pete could remember who WC was for a few minutes, and then ask again, “Who are you?” Each visit, the question came more often; each visit, the time it took Pete to process the answer took longer. As bad as that was, it got worse when Pete stopped asking.

Here’s the problem: when you reach the state where your legal capacity is gone, and you might prefer to be allowed a death on your own terms, you have lost the ability to make that choice.

Alaska and many other states recognize something called an “Advance Health Care Directive,” which allows you to choose, in advance, not to receive life-extending therapies when you are suffering a terminal illness. But Alzheimer’s and other dementias do not qualify. In a recent article in the New York Times, Paula Span wrote about 88-year old Jerome Medalie, who listed 10 triggering conditions, including “I cannot recognize my loved ones” and “I cannot articulate coherent thoughts and sentences.”

If Medalie suffers any three such disabilities and they persist for several weeks, he wants his health care proxy — his wife — to ensure that nobody tries to keep him alive by spoon-feeding or offering him liquids. VSED is short for “voluntarily stopping eating and drinking,” It’s not unheard-of as an end-of-life strategy, sometimes used by older adults who hope to hasten their decline from terminal conditions. But can Medalie use VSED to end his life by including such instructions in an advance directive?

Probably not in Alaska. A medical treatment center would worry it was committing a homicide by failing to provide life-extending care. After all, neglecting nutrition and hydration is a form of elder abuse. It’s not just a United States problem. WC’s favorite author, Sir Terry Pratchett, has a form of early onset dementia. He has spoken publicly on many occasions on this same issue, even helping make a film documentary in Switzerland where the law does permit death with dignity for those suffering from dementia.

The Alaska Legislature, WC fears, is purely incapable of addressing this issue. So far as WC knows, there’s not even a useful model statute proposed. Many times in the past, less incompetent Legislatures have used model statutes from places like the Conference of Commissioners on Uniform State Laws as a source of legislation when they have recognized the limits of their skills. Now, the current legislators seem to turn to the Kochtopus’s ALEC instead. WC suggests you not wait for ALEC’s solution.

WC hates the thought of spending his final years as a drooling vegetable, unable to recognize the people around him or even experience the world. A legal right to VSED would be  useful, if imperfect, solution. It would be an act of kindness. And the world could use a little more kindness.


2 thoughts on “Death on Your Own Terms: Dementia and Choice

  1. I am curious about the situation in Alaska. Our local hospital is Catholic owned. How does this bode for an advanced directive being honored?

    • Alaska has an Advance Health Care Directive statute. So far as WC knows, all Alaska health care acilities respect directives given under Alaska’s AHCD statute. The problem is that the statute proably doesn’t apply in the situations WC wrote about.


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