People were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for a patient without dementia, even when an advance directive requested life-sustaining care, according to new research from the University of Colorado Anschutz.
The study, published in JAMA Network Open, surveyed nearly 6,000 U.S. adults to examine how a patient’s dementia status, advance directive, physician recommendations and a surrogate decision-maker’s own preferences influenced recommendations about end-of-life care.
The findings showed that dementia status played an important role in participants’ recommendations. The difference in recommendations for life-sustaining treatment persisted even when the patient’s documented wishes called for that treatment.
“People’s assumptions about what life is like with dementia appear to play an important role in how they think about treatment decisions,” said Lauren Hersch Nicholas, PhD, MPP, professor of medicine in the division of geriatric medicine at the University of Colorado Anschutz School of Medicine and study lead author. “That’s important because a patient’s wishes may not be reflected in the care they ultimately receive if the person making decisions for them has a different view of what quality of life means.”
In the randomized online survey experiment, participants reviewed scenarios involving seriously ill, hospitalized older adults. Researchers varied several factors, including whether the patient had dementia, whether an advance directive requested life-sustaining or comfort-focused care, and whether a physician recommended treatment.
Among patients with dementia who did not have an advance directive, participants recommended life-sustaining treatment in 15.6% of scenarios. That increased to 41.0% when an advance directive requested life-sustaining treatment. When the directive instead requested comfort-focused care, participants recommended life-sustaining treatment in 7.6% of scenarios.
A similar pattern was seen in scenarios involving patients without dementia, although participants were more likely to recommend life-sustaining treatment overall. They recommended life-sustaining treatment in 38.9% of scenarios with no advance directive, 66.3% when a directive requested life-sustaining treatment and 14.4% when a directive requested comfort-focused care.
The findings suggest that advance directives can influence surrogate decision-making, but they are only one part of the decision-making process. An advance directive documents a person’s preferences for future medical care if they become unable to communicate their wishes.
“Some of the things we think are important in advance care planning really did move the needle,” Nicholas said. “Having a document that clearly states your wishes mattered. But so did the preferences of the person making the decision.”
That finding underscores the importance of choosing a health care decision-maker who understands a patient’s values and is willing to follow their wishes rather than simply making the decision they would want for themselves. A surrogate decision-maker is a person who makes health care decisions on behalf of a patient who cannot make or communicate those decisions.
“Advance care planning isn’t just about filling out a document and putting it in a drawer,” Nicholas said. “It’s about having ongoing conversations about what matters to you, making sure the person you’ve chosen as your surrogate understands those values and revisiting those conversations as your health and circumstances change.”
The findings are particularly relevant because many older adults may eventually rely on someone else to make medical decisions on their behalf. Previous research suggests that more than two-thirds of older adults may face a situation in which someone else may need to make end-of-life medical decisions on their behalf, yet many have not designated a surrogate or documented their preferences.
For Nicholas and her colleagues, the findings point to a need for more robust and ongoing advance care planning.
“We need more and better conversations about these decisions,” Nicholas said. “It’s not enough to ask whether someone has an advance directive. We need to understand whether that directive reflects what they would want now, and whether the person making decisions for them understands what they would want.”
Key points:
- Dementia influenced treatment decisions even when patients requested life-sustaining care.
- Advance directives mattered, but did not fully determine treatment recommendations.
- Surrogates’ preferences also shaped decisions about end-of-life care.
- Ongoing conversations are key to ensuring patients’ wishes are understood and followed.