Good morning, ProviderNation. It’s a good day for sober, stoic reflection*, so many thanks to Dr. Cari Levy and the fine folks at JAMDA for Levy’s terrific editorial, “Expectation Conversations About the Very Predictable Events in Advanced Dementia,” in this month’s edition.
“If you’re caring for an older adult with advanced dementia,” she begins, “odds are you’ll be asked to participate in a critical decision in the next six months, and the decision will likely center on administration of antibiotics, hydration, or nutrition.”
Referencing an earlier JAMDA study of care for Italians suffering from advanced dementia, Levy—like so many practitioners (and yet so few, see below)—finds herself confronted not with questions of “what,” but questions of “why.” Even the Big Public may have a general sense of what kinds of care can be offered for the various nasty ailments that plague dementia sufferers (tubes, catheters), but few people (including too few doctors) have asked why they would offer that care in the first place. After all, can we say that invasive treatment is really in the best interests—or even a reflection of the basic desires—of those with advanced dementia in the first place?
First, the what: As Levy sees it, “the most common framework in the United States” for the ethics of the matter coalesce around four guiding principles:
- “Respect for autonomy by ensuring the patient is both informed and able to participate in medical decision making.
- Beneficence mandating that clinicians act in the best interests of their patients.
- Nonmaleficence guiding clinicians not to harm patients.
- Justice requiring fair and equitable treatment for all.”
“Ideally,” Levy says, “in a society valuing these principles, those with dementia would have been informed well in advance of disease progression about the typical clinical course associated with dementia and given an opportunity to document preferences for care based on their personal values. In the absence of such directives, input would be sought from those who know the values of the patient, and all efforts would be focused on providing beneficent, nonmaleficent care. Regardless of who is making decisions, an understanding of illness trajectory in advanced dementia is necessary before making declarations about care preferences.”
But, society, notoriously, is not ideal. And Levy is troubled by some of the data she’s seeing. In the Italian study, for instance, “almost none of these residents had an advance directive, and the vast majority of the decisions were made without input of family in the nursing home cohort (despite regular presence of family in the nursing home),” she writes.
In fact, nearly one-third of the decisions made affecting care for patients with advanced dementia were for “the single purpose of prolonging survival,” Levy says.
“This is important for two reasons. First, it suggests that these clinicians believed that many of the available interventions were life-prolonging when in fact this may not be the case,” Levy argues. “Second, it brings up the role of paternalism in times of ‘life-and-death’ decisions. In the United States, paternalism has given way to autonomy, but some have questioned whether this trend places undue burden on some family members who look to clinicians for guidance about ‘life-and-death’ decisions. It would be helpful to further characterize how much ‘palliative paternalism’ took place in these nursing homes in which the physician struck a balance between family autonomy and paternalism based on their knowledge of disease course and how that approach ultimately effected family bereavement.”
It’s not just a matter of whether forced hydration (say) causes more suffering without really prolonging life, Levy says. There’s also genuine concern about the spread of antibiotic-resistant superbugs (some of which appear to be cultivating in elder care when doctors pump dementia patients full of antibiotics).
“Are we trading an easier act of writing a prescription for the harder conversation about why we’d prefer not to write a prescription and placing communities at risk by contributing to drug resistance?” Levy asks her colleagues. “Can we seek equitable treatment in the form of social supports that permit care in the most appropriate environment rather than the ones that exist by default?”
Things are in motion, Levy says, straining for a note of optimism at the end of her piece, but until there are “evidence-based,” widely available decision aids available, “a few things are clear.”
“There are very predictable critical decisions that will likely need to be made for persons with advanced dementia,” Levy says. “We need to know what to do when pneumonia develops, how we will handle problems with nutrition and hydration, and whether or not hospitalization is desired for worsening conditions… Robust care plans and expectation conversations hopefully will be routine and allow clinicians to replace the phrase, ‘There’s nothing more we can do’ with, ‘There’s much more we can do for your loved one.’”
Some thoughts may, indeed, lie too deep for tears (see above, and below), but dementia and death ain’t them, so extra bouquets to Levy for having the courage to raise these questions and direct them at her colleagues. (Not the least because so many of her colleagues seem to go to pieces at the mere thought of “The Talk.”)
Greg Elliot is the owner and operator of American Medical Facilities Management in Charleston, W. Va. Like so many providers, he doesn’t pretend to have any answers to the questions Levy has raised—but he says he’s awful glad to have them out in the open.
“This is a tough-minded essay on a tough topic,” he tells Your Humble Correspondent. “It would be great to see this start a much broader conversation in our culture about humane treatments for inhumane diseases. For now, it’s essential that providers be open, honest, and often in discussions with friends and families, including—but not limited to—discussions about advance directives, and to ask these kind of tough questions years before they come up on their own.”
*On the issue of the day, I prefer to emulate the French after the loss of Alsace and Lorraine: “Think of it always; speak of it never.”