Flowers for Posner

Here’s (gift link) a really interesting piece of reporting on a very fraught issue: How to deal with one particularly difficult end of life issue that comes up in the late stages of dementia:

Although Ms. Lawson had previously expressed her preference not to live with advanced dementia, she hadn’t formalized those wishes in a written advance directive, a document that would tell caregivers to withhold food and water once her dementia reached a late stage. Without this, the family wasn’t sure what they could do. But they knew Ms. Lawson’s dementia would progress until she died. They also knew she wouldn’t want to prolong that process.

The family began looking for an offramp. During a meeting with Ms. Lawson’s primary care doctor, they explained the situation: Ms. Lawson spent most of her time in a wheelchair, staring at her knees and often refusing food.

“We were never interested in prolonging her life just for the sake of prolonging her life,” Ms. Hendrickson remembered telling the doctor. “We wanted her to just be happy and comfortable.”

The doctor, who was not employed by the memory care unit, had a suggestion. She had recently read a paper that put forward a new approach, called “minimal comfort feeding,” in which providers stop scheduled feedings and instead offer dementia patients just enough food and liquid to ensure comfort, and only when the patient shows signs of hunger or thirst. The idea was that someone with advanced dementia with no interest in food, or limited interest, might be allowed to die once they begin to refuse enough hydration and calories to sustain them.

Limiting food and water has been used to hasten death in people dying at home since long before it had a formal name. But to accelerate decline this way for people with advanced dementia, whether their deaths are imminent or not, is uncomfortable territory for many.

For Ms. Lawson’s family, though, it felt right. By then, Ms. Lawson had lost almost 40 pounds and showed little interest in food or anything else. The standard approach, which involves intensive work to ensure a patient gets enough daily nourishment to survive, can keep late-stage dementia patients alive for several years. Minimal comfort feeding was a middle ground: honoring a person’s desire for an intentional and dignified death while also keeping them more comfortable than withholding all food and water might.

Minimal comfort feeding, which is apparently has only very recently been formalized as a potential medical approach to the problems of advanced dementia, is very much part of a legal gray zone. That zone is a product of the following conundrum: How do we honor the wishes of a past self, when mental deterioration has replaced that person with another one?

A related important consideration that can get overlooked in this sort of circumstances is, what about the interests of professional caregivers, who for all sorts of reasons may not want to be involuntarily enlisted in the task of allowing a person to starve to death?

Ms. Bern-Klug, a social work professor at the University of Iowa, said nurses “take their work seriously,” and fully denying food and water to patients is “not what they signed up to do.” While some patients are late enough in their dementia as to be nonresponsive, others may still be enjoying and requesting food and may not remember writing a directive to withhold it. “Which person do you listen to: the person who had capacity once and made this decision that they wouldn’t want to live this life, or the person with dementia, who may seem very, very happy with the life that they have?” asked Dr. Eric Widera, a professor of geriatric medicine at University of California, San Francisco.

Other considerations here include the very slippery slope toward the eugenic logic of life unworthy of life.

But very much on the other hand, it’s a perfectly rational and reasonable thing for a fully mentally competent person to decide that they don’t want to continue to be kept alive in a state of advanced dementia. Still, as a practical matter, very few people are going to end up formalizing such a decision in an enforceable advanced medical directive, especially given that the enforceability of such directives is part of that gray zone:

A few months after Dr. Wechkin’s paper [on the concept of minimal comfort feeding] came out, Ms. Lawson, the Washington woman with dementia, began declining more rapidly. Ms. Lawson’s doctor knew of Dr. Wechkin through the medical community and connected her to Ms. Lawson’s family to answer their questions.

The family — Mr. Lawson, Ms. Hendrickson and her two brothers, Seth and Jonas Lawson — met at a local pub to discuss minimal comfort feeding. They worried it might be painful, but Dr. Wechkin had described a peaceful death, similar to what occurs after stopping dialysis, where patients often grow tired and drift into unconsciousness before dying.

The family decided it was the right approach for Ms. Lawson. Shortly after, they piled into a room at Ms. Lawson’s nursing home, and with Dr. Wechkin, outlined a plan.

“The care facility balked,” Ms. Hendrickson said. Though they didn’t provide a reason, nursing homes often fear malpractice suits and penalties from regulators. (Providers and administrators at Ms. Lawson’s facility declined to comment.) According to the family, they refused to transition Ms. Lawson to minimal comfort feeding and threatened to call Adult Protective Services if Ms. Hendrickson administered the care at home. “Bring it on,” Mr. Lawson remembered saying in the meeting.

Last year I went down a deep and disturbing rabbit hole of ongoing litigation regarding a center for pro se litigants, that Richard Posner was trying to set up when his extraordinary career — Posner was the most gifted academic I’ve ever known personally — was cut short by Alzheimer’s disease. Ironically, the litigation, which has been going on for seven years now, is the product of a crusade by a pro se litigant, who claims that Posner made various legally enforceable promises to him about the litigant’s role in running the stillborn center.

It’s a disconcerting experience to read Posner’s Wikipedia page, because naturally enough it’s written in the present tense, about a man who no longer exists. Although I was never as close to him as dozens of other legal and academic people were, I still had a number of conversations with Posner over the years about morally difficult and intellectually challenging legal and political issues. I would have loved to discuss this one with him.