When to Ignore a Promise to ‘Never Put Me in a Home’

Found this great article, thought you might find the perspective interesting...

Dr. Abigail Zuger on the everyday ethical issues doctors face.

Our new patient, 88 years old, had been demented for years. She was admitted to the hospital with a deep, malodorous and infected pressure sore stretching from the top of her right shoulder down to the middle of her spine.

It took us a only few seconds to choose her antibiotics, but a half hour later we were still standing outside the door to her room, caught up in her case.

We wondered which nursing home could have allowed such a thing to happen. But it turned out that she had been admitted from home. We wondered if adult protective services, or maybe even the police, should be called. Then we learned the whole story.

Our patient came from a poor immigrant household without much community support. For years, as she felt herself slipping, she had emphasized over and over again that she never wanted to go into a “home” or be tended by strangers. She wanted to stay at home with her children. Nothing unusual there.

What was unusual was the precision with which her children followed her wishes. As their mother became really confused, then silent, then bedbound, they continued to care for her themselves in the back bedroom.

But even much diminished, she was a big, solid woman. Her children could feed and change her, but she was very difficult to turn, and the skin on her back finally began to break down. From the looks of it, they had struggled and failed to keep her off that gigantic sore for months.

Finally, they called an ambulance, took her to the hospital and, sobbing, went home. Their mother stayed behind on ward 9B, a vivid illustration of the problems with what are known as advance directives.

These range from informal “never put me in a home” conversations to long legal documents specifying exactly which medical treatments the signatory will and will not accept in the event of incapacitating illness.

They are supposed to give people some control over the future. More often than not, perhaps, the future refuses to be controlled.

Directives may not be detailed enough to help organize a patient’s care. They may be so detailed that doctors and relatives cannot agree on how to interpret the minutiae. Directives may be overlooked in the heat of emergency, ignored out of pure lassitude, or lost somewhere in the closet.

Or, as in our patient’s case, they may be clear and simple, and followed to the letter. And look what happened to her.

Encyclopedic medical and legal commentary over the last few decades has enumerated the problems with advance directives. To date, no proposed solution has come without its own problems.

These days, the favored advice for people who want to control their future is to select a health care proxy. That person can then evaluate whatever situations arise, weigh options, and make decisions that as much as is possible shape a future like the one the patient desired.

But of course, proxies are directed by the very same conversations and choices that can be so difficult to interpret. And the one question that might help is the one proxies seldom remember to ask. Namely: “Do you really want me to do exactly what you are telling me to do? How much wiggle room do I get?”

Without that knowledge, it can be immensely difficult to mediate between what are often two very different versions of the same person.

A 2014 advertisement for the New York State Lottery featured an older man remembering that, as a callow youth, he almost bought a deck of cards at the corner store instead of the lottery ticket that made him fabulously rich. The announcer points out that “present you” can be awfully selfish, with a deplorable tendency to overlook the best financial interests of “future you.”

When it comes to health care, present you can be just as clueless. Present you, after all, can only imagine the future. Sometimes feeble old age and illness aren’t nearly as bad as anticipated. Sometimes they are a lot worse.

Ethicists always struggle over the case of the happily demented patient who, as a younger person, absolutely rejected all that might preserve life in the absence of intellect: “Do not feed me!” “No spoons! No tubes!”

That’s present you: decisive, perhaps a little cruel. Suppose future demented you turns out to be placid and pain-free, all smiles, cuddling a baby doll and humming along to music? If future you adores ice cream, can we not spoon it out?

Our own patient and her family got all bolluxed up in obligations to their past selves. The bottom line was clear — the patient never would have wanted what she got. But even given that, we wondered, when should her children have changed course?

When they saw a little blister over her shoulder blade? When it got bigger? When they came in for the 10th morning in a row and found her lying back on that shoulder, curled up in her favorite position, on her favorite pillow, in her very own bed?

We had no good answers. Our patient spent a few days in the hospital and then went straight to a nursing home to finish a long course of antibiotics and, presumably, to live there for the duration.

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Marrianne