How Would You Like to be Treated if You Had Dementia?

By Leslie C. Griffin

The New Yorker just published an article full of ethical questions about the best health care treatment for dementia patients. It should make you think about which life you would choose. Larissa MacFarquhar’s piece is titled “The Comforting Fictions of Dementia Care.” Its subtitle suggests a sad story, noting “Many facilities are using nostalgic environments as a means of soothing the misery, panic, and rage their residents experience.” The article tells numerous powerful stories of dementia patients’ good and bad experiences.

We learn that the dementia medical history has moved from the old physical restraints (tying patients up), to the newer mental restraints (filling them with chemicals), and finally to the current psychological placebos. We get a detailed picture of institutions that are built on placebo deceptions. They have vinyl baby dolls, fake buses, bus stops, and many fake stories about what is really going on in the unit. Patients are supposed to think they are not in a medical facility.

Caretakers disagree about reality orientation as opposed to validation of the patients’ current feelings, whatever they are. Reality orientation makes patients repeatedly memorize who they are, and to face that their loved ones have died or their lives are not what they used to be. In contrast, validation wants to make patients feel good where they are today. The validation people learn the most from drama, because their goal is to make patients feel at home wherever they are right now, even if it what they tell the patient is not true.

The fundamental question is about truth and lying. Which would you prefer? One school of medical thought believes patients have a right to receive the truth from their medical providers. Even the harsh truth that is sad to live with. That is patients’ fundamental right.

Nonetheless, for some people, “in dementia care, everyone lies.” The reason for lying is that telling the truth will cause patients too much pain. The liars wants patients to have whatever they want, and give them a world where they are doing what they want to do, no matter how it is set up, because “truth cannot contribute to a good life.”

What should happen to a man who cannot remember that his mother, or his child, has died? Tell him the truth, maybe repeatedly. Or come up with a less painful, untrue explanation. What’s the harm in telling him a lie that will be quickly forgotten? The happiness of the lie can be more consoling than the dignity of the truth. And that is the repeated, happiness versus dignity, debate in this article.

What about the man who is retired, and hasn’t worked for years, but still believes he is working? Is it better to encourage him to believe he is working? Or to put him through an experiment where, once he could not find any working time cards on his computer, he has to recognize that what he thought was wrong. In this article, his daughter filmed him while he was looking for the records on his computer so she can repeatedly show him the truth.

The lying advocates say the lie will cause the patients less pain. And that patients will soon forget it. The truth advocates say patients lose trust in their doctors when they are lied to. It is wrong to fill the patients’ minds with unethical delusions. Dementia patients go in and out of lucidity. They may remember mom is dead soon after a medical provider told them she was just out for a walk. And different staff may tell their patients different stories, perhaps leaving patients confused and suspicious.

We hear about the Simulated Presence Therapy, where the staff compile memories from the patient’s past. They put those together so that patients can have a phone call to give them a feeling of talking about things they know with someone who might—in truth—be dead or gone. For many patients, SPT is much better than being tied up or receiving medical drugs to keep them still. And it is much better than the real truth.

The truth v. lying question leads MacFarquhar to debate the status of advanced directives, which everyone in medical ethics is always praising and calling for.

What about people who say one thing in advance—tell me the truth—but later the truth hurts? Should medical personnel and families avoid what the patient has previously ordered? Or the man who, in advance, wants care withheld but then seems pretty happy living in a dementia institution. Should medical personnel and families respect the advance directive, no matter what, or adjust it to current experience?

I was surprised to read that some people would ignore the advance directive. To me, there is no question that I wouldn’t want to live in an institution for the brain damaged, and that my caretaker should just let me go. I discussed this article with a friend and former student; she is now the married mother of three children. She liked the idea of an advance directive being overridden to value her present state of life. She thought lies might be less painful than the truth. She thought being alive in an institution, and even being lied to, could be a service to her parents, husband, and children, who might want her to be alive, even in dementia circumstances. As the article states, “Someone who most values happiness, however simple, might choose lies and medicine; someone who feels that life with late-stage dementia, without a certain degree of awareness, is not worth living might choose truth and death.”

Apparently we would be wise to discuss our attitude toward truth, lying and the meaning of advance directives before we suffer dementia or brain injury!

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