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Discussion Point: More on Advance Directives

Image courtesy rakratchada torsap @ http://www.freedigitalphotos.netI belong to an on-line discussion forum for people in my profession who work with persons who have dementia.  Often, one or more of the group members will  write about an interesting article; it may be a news item or a research study.  The other day, someone posted a link to an article in the New York Times entitled “Choosing an End Game for Dementia.” (You can read the original article here.) It had to do with a new trend that’s starting to show up regarding advance directives for persons with dementia.

The article profiles an 88-year-old man who has an advance directive which covers many things found in a typical advanced directive — CPR, feeding tubes, and ventilators.  But it contains an additional component which is starting to be found, in various forms, more and more frequently.

This gentleman, a retired lawyer, has listed a series of 10 conditions, such as “I cannot recognize my loved ones,” which are to serve as a trigger for the advanced directive.  If he exhibits 3 or more of these conditions for a period of several weeks, he has specified that his wife is to make sure that no one keeps him alive by spoon-feeding him or offering him liquids.

There is currently an ethical debate going on, involving lawyers, physicians, and other professionals, regarding VSED (“voluntarily stopped eating and drinking”). This is an end-of-life strategy which is being used more and more by older adults who have terminal conditions.  But there are those who are concerned about whether such instructions can (or should) be used by those with dementia.

Unlike many other terminal conditions, dementia usually leads to a slow and lingering death.  As one physician said, there is “no plug to pull” with most of these individuals.  And, even those states that do allow for the administration of lethal medications to the terminally ill, there is a requirement that the patient be mentally intact and able to take the drugs themselves.  Some professionals argue that, at some point, persons with dementia lack this capacity.

That said, there has been an entire body of research which shows that palliative treatments such as VSED, when done with care, can be a comfortable way to die.  But some question whether it is a viable treatment for those who, perhaps years after they specify their desire for such treatment, can remember or understand why they wanted it.  There are many physicians and long-term care facilities who have indicated that they will refuse to honor such a document.  And several states have banned the withdrawal of food or hydration, regardless of what an advanced directive might say.

A recent court case in the U.K. dealt with such a situation.  A retired nurse had specified that she wished to have no food or liquids if she became incapacitated.  When her husband and daughter attempted to honor her wishes, the facility where she lived took them to court.  The judge subsequently ruled that food could not be withheld from the woman as long as she was physically able to swallow, as swallowing food placed in her mouth implied consent to being fed.  The case is currently under appeal.  (Those of us who are familiar with the reflexive nature of the swallowing process might argue with this.)

So, what do you think?  I think it’s certainly an interesting point for discussion.  I can understand withholding a feeding tube when a person in the advanced stages of dementia is no longer physically able to swallow, and is at severe risk for aspiration.  And I do agree that it is a person’s right to specify when they want to be allowed to die.  But this is a debate that will most likely go on for some time to come, with many advocates on both sides of the issue.

Comments?  What would you like done in your case, or that of your mother/father/grandparent/spouse?  Let’s get a discussion going here.

 

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Categories: Uncategorized
  1. January 23, 2015 at 9:08 PM

    Interesting cases. As is common with end-stage Alzheimer’s, my father lost his swallowing ability. Fortunately, we (myself & medical staff) were able to convince my mom that a feeding tube was not a good idea. But Mom didn’t like the idea of withholding nutrition, so the staff at the skilled nursing facility were charged with trying to get my dad to eat puréed foods. He died less than a month later.

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