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In a randomized online survey of nearly 6,000 U.S. adults, participants 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. Advance directives influenced recommendations, but dementia status and the surrogate decision-maker’s own preferences also mattered.
Survey participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for one without dementia, even when an advance directive requested treatment, according to a University of Colorado Anschutz study published in JAMA Network Open. The findings suggest that a patient’s documented wishes may not, on their own, determine how another person recommends care.
The research team surveyed nearly 6,000 U.S. adults in a randomized online experiment. Participants considered scenarios about seriously ill, hospitalized older adults. Researchers varied whether the patient had dementia, whether an advance directive requested life-sustaining or comfort-focused care, and whether a physician recommended treatment. The scenarios measured participants’ recommendations; they did not track actual treatment decisions or patient outcomes.
For a patient with dementia and no advance directive, participants recommended life-sustaining treatment in 15.6% of scenarios. That figure was 41.0% when the directive requested life-sustaining treatment and 7.6% when it requested comfort-focused care. For a patient without dementia, the corresponding shares were 38.9%, 66.3% and 14.4%. Thus, directives shifted recommendations in both groups, while participants recommended treatment more often for patients without dementia across these scenarios.
The researchers also found that the preferences of the person making decisions for the patient influenced recommendations. The study’s lead author, Lauren Hersch Nicholas, a professor of medicine in geriatric medicine at the University of Colorado Anschutz School of Medicine, said assumptions about life with dementia may shape treatment judgments. The report does not establish why participants made their choices or how closely survey responses match decisions made in clinical settings.
How Dementia Shaped Treatment Recommendations
The results concern a practical problem in surrogate decision-making: when a patient cannot communicate, another person may have to interpret their wishes and make medical decisions. The survey suggests that a patient’s diagnosis and the surrogate’s own views can influence recommendations, even when the patient’s preferences are documented. That matters because a recommendation that differs from a directive could affect discussions about care, although this experiment did not measure real-world treatment.
The findings also distinguish between having a document and having a plan that others understand. An advance directive describes preferences for future care if someone cannot communicate, but the survey indicates it is one influence among several. The authors’ account points to conversations with a chosen decision-maker as a way for people to explain their values, rather than relying on a form alone.
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What the Survey Tested
The study, published in JAMA Network Open in 2026, used hypothetical scenarios rather than records of actual hospital care. By varying dementia status, directive instructions and physician recommendations, the researchers could compare how those features related to participants’ stated choices. Because the cases were presented online, the results describe responses to survey scenarios, not the frequency of particular decisions among families or clinicians.
The report defines a surrogate decision-maker as someone who makes health care decisions for a patient who cannot make or communicate them. It cites prior research suggesting that more than two-thirds of older adults may face a situation in which someone else must make end-of-life medical decisions. That estimate is background cited by the report, not a finding from this survey. The study’s DOI is 10.1001/jamanetworkopen.2026.37691.
“People’s assumptions about what life is like with dementia appear to play an important role in how they think about treatment decisions.”
— Lauren Hersch Nicholas, study lead author
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Limits of the Survey Evidence
The survey cannot show whether the recommendations participants gave would lead to the same choices in actual hospitals. It also does not establish why dementia status affected responses, or whether participants’ assumptions about quality of life were the cause. The reported percentages describe survey scenarios, not the proportion of patients who receive life-sustaining treatment in practice.
The supplied report does not give details such as the exact wording of every scenario, the demographic breakdown of respondents, or the size of each comparison group. It also does not quantify how physician recommendations affected the results. The findings should not be read as evidence that all surrogates, or any particular individual, will disregard a patient’s stated wishes.
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More Conversations About Care Wishes
The researchers say advance care planning should include more than documenting preferences: people should discuss their values with the person they have chosen as a surrogate and revisit those discussions as health and circumstances change. Nicholas said the next concern is whether a directive still reflects what a person wants and whether the decision-maker understands those wishes.
The supplied report does not announce a follow-up study or a specific policy change. For now, the published results add evidence about how dementia status, written instructions and surrogate preferences may shape stated recommendations. Whether similar patterns occur in clinical decisions remains an open question.
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Key Questions
What did the study find?
Participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient with dementia than for one without dementia, including when a directive requested treatment.
Did advance directives affect participants’ recommendations?
Yes. For patients with dementia, recommendations for life-sustaining treatment rose from 15.6% without a directive to 41.0% when a directive requested treatment. They were 7.6% when the directive requested comfort-focused care.
Was this a study of actual medical decisions?
No. It was a randomized online survey in which nearly 6,000 U.S. adults responded to hypothetical scenarios. It measured stated recommendations, not treatment delivered in hospitals.
What did the researchers say people can take from the findings?
Lead author Lauren Hersch Nicholas said planning includes discussing care preferences with the person chosen as a surrogate, so that person understands the patient’s values. The study did not test whether these conversations change real-world outcomes.
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