11/29/2021 Kim O’Brien

Adding Value to an Age-Old Story

This magazine article is part of Spring 2021 / Issue 96
An F&M professor and his former student team up to explore an ethical puzzle: How do we decide what to do when our past, competent self and our current, incompetent self value different things?
  • Magazine illustration

What if a patient’s current best interests conflict with their past living will directives?

Franklin & Marshall Associate Professor of Philosophy David Merli and medical school student Ben Lin ’17 are unraveling the complexities of dementia and advanced directives through research that Merli describes as “a little medicine, a little philosophy.”

Medical advancements and new criteria for the diagnosis of Alzheimer’s disease enable earlier diagnosis, often before symptoms fully develop. Lin and Merli anticipate that advanced directives will become more prevalent as patients make decisions about the planning of their medical care prior to experiencing dementia, the decline in mental ability severe enough to interfere with daily life. Alzheimer's is the most common cause of dementia.

What Merli and Lin found, however, went against conventional thought. A subset of patients who recovered from a rare brain disorder mimicking Alzheimer’s retrospectively endorsed the continuity of their values throughout their period of dementia.

“The responses were pretty surprising. People retrospectively endorsed these actions because they were in line with their former values,” said Lin, a University of South Florida Morsani College of Medicine student completing his final rotation with Lehigh Valley Health Network.

These interviews revealed that, in hindsight, patients endorse the continuity of their values throughout their period of dementia. In addition, the quality of these values at the time of dementia seem to be of the appropriate sort to demand respect from the standpoint of autonomy.

Lin’s interest in the medical ethics traces back to Merli’s mentorship at F&M.

“I had absolutely no interest in philosophy,” Lin said. That quickly changed after taking several of Merli’s classes.

Now, both of their bylines appear in “Dementia, Valuing and Advance Directives,” published in April by Wolters Kluwer Health Inc. on behalf of the American Academy of Neurology.

In addition, Lin presented the research at the American Academy of Neurology’s annual conference in April, held virtually due to COVID-19 precautions. It’s rare for the academy to feature students who have not yet finished medical school—highlighting just how novel this research is.


To the Brink and Back

A patient’s advance directives—often in the form as a living will—can decline medical care for their future incompetent self. However, Lin discovered a subset of patients who had been previously demented to the point of incompetence due to Normal Pressure Hydrocephalus, a disease caused by an abnormal buildup of cerebrospinal fluid in the brain's cavities. The condition can mimic the symptoms of Parkinson’s and Alzheimer’s—primarily, a dementia-like state.

“Dementias are insidious, they’re aggressive, and they are incurable,” Lin said. “Normal Pressure Hydrocephalus is one of the few diseases where it's possible to interview someone who has been to the brink and back – someone who has had the experience of losing all their faculties and is able to tell you about it with all their faculties intact,” Lin said.

Lin briefly read about the condition during his first year of medical school; it resurfaced when he was instructed to choose a medical school project.

“When I was in undergrad, I found the philosophy of moral ethics to be really fascinating to me. I figured I'd try to write a philosophy paper of my own around medical ethics,” he said.

The coordinator of a Normal Pressure Hydrocephalus support group put Lin in touch with seven people who had different experiences with the condition. The disease is relatively easy to treat but difficult to diagnose; patients are often told they have Parkinson's or some other neurological ailment.

“When they get the correct treatment, they're mostly back to their old selves,” Merli said. “That means they can talk coherently about their experience with dementia, how their values change, and so on.”

Merli and Lin’s core claim is that the loss of competence does not entail the absence of valuing, caring, or exercise of the will that commands respect in treatment decisions. “Demented patients should be able to make health care choices about their treatment if they’re able to make choices in line with their prior values” Lin said.


A Matter of Ethics

Merli and Lin hope their research gives people pause when determining advanced directives.

“In general, people are bad at predicting the future,” Merli said. “One problem with advanced directives is that when people create them, they don’t know what life will be like in the future.”

Another surprising factor is that dementia patients' self-reported wellbeing is much higher than observers think. “We misjudge this because we're sort of smuggling our own values into their perspective. So that complicates treatment decisions as well,” Merli explained.

That’s not to say there isn’t an adjustment period. In the initial period when a patient is adapting to any loss of function, “there’s this period where everything is terrible and everything is going to change… but once you get used to your new limitations, your overall rate of happiness goes quickly back to baseline,” Lin said.

“People are remarkably resilient,” he added. “That’s something I believed going into this project. Now that I've interviewed these patients, it’s turned out to be true.”

What if a patient’s current best interests conflict with their past living will directives?
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