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A randomized survey experiment found 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. Advance directives requesting treatment increased recommendations in both groups, but did not erase the difference.
A survey experiment involving nearly 6,000 U.S. adults found that participants were about 19 percentage points less likely to recommend life-sustaining treatment for a seriously ill patient described as having dementia than for a patient without dementia—even when an advance directive requested that care. The University of Colorado Anschutz research, published in JAMA Network Open, suggests a patient’s documented wishes may not fully determine how others recommend care.
Researchers presented participants with scenarios about seriously ill, hospitalized older adults. The survey varied whether the patient had dementia, whether an advance directive specified life-sustaining or comfort-focused care, whether a physician recommended treatment, and the preferences of the person making decisions for the patient. It was a survey experiment about recommendations, not a review of actual treatment received by patients.
For patients with dementia and no advance directive, participants recommended life-sustaining treatment in 15.6% of scenarios. That share rose to 41.0% when the directive requested life-sustaining care and fell to 7.6% when it requested comfort-focused care. In scenarios involving patients without dementia, the corresponding figures were 38.9%, 66.3% and 14.4%.
The results show that directives were associated with substantial changes in recommendations, while the dementia-related gap remained. The study also found that the surrogate’s own preferences influenced recommendations, according to the researchers. The findings do not establish why participants responded as they did or show that the same patterns occur in clinical practice.
How Directives Shape Care Recommendations
The findings matter because surrogate decision-makers may speak for patients who cannot communicate or make medical decisions themselves. If a surrogate’s assumptions about dementia or quality of life differ from the patient’s values, those assumptions could affect recommendations, even when written instructions are available. The survey does not show that patients’ wishes were overridden in actual care, but it identifies a potential tension between documented preferences and others’ judgments.
The results also suggest that an advance directive is not the only influence on decisions. Researchers said a surrogate’s own preferences mattered alongside the document. For patients and families, the practical implication raised by the study is that planning can include both recording preferences and discussing them with the person chosen to make decisions.
This is not evidence that one treatment choice is right for every patient with dementia. Life-sustaining treatment and comfort-focused care involve individual circumstances and values. The study measured what survey participants recommended in hypothetical scenarios, not the clinical benefit of treatment or the quality of decisions made by families and care teams.
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The Study’s Decision Scenarios
An advance directive records a person’s preferences for future medical care if they later cannot communicate or make decisions. A surrogate is someone authorized or asked to make health care decisions on behalf of a patient who is unable to do so. The study examined how those written preferences and surrogate-related factors shaped recommendations in the survey scenarios.
The paper was published in JAMA Network Open in 2026, with DOI 10.1001/jamanetworkopen.2026.37691. Medical Xpress reported the findings on October 7. The researchers’ account says prior research suggests more than two-thirds of older adults may face a situation in which someone else needs to make end-of-life medical decisions for them; many, however, have not designated a surrogate or documented preferences.
“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 and professor of medicine at the University of Colorado Anschutz School of Medicine
What the Survey Cannot Establish
The experiment measured participants’ recommendations in hypothetical cases; it did not track actual clinical decisions or patient outcomes. The report does not establish whether the difference reflects assumptions about dementia, other scenario details, or a combination of factors. Nor does it show how often patients’ directives are followed in real-world care.
The supplied report gives an overall difference of about 19 percentage points but does not provide the full statistical estimates, confidence intervals or detailed breakdowns needed to assess how that figure varies across participant groups. It also does not clarify in the summary how physician recommendations affected responses. Further research would be needed to test whether the survey patterns translate into clinical settings and how conversations with surrogates might change decisions.
More Conversations in Advance Planning
The researchers call for more sustained advance care planning, including conversations about a person’s values and whether the chosen surrogate understands those preferences. Nicholas said planning should be revisited as health and circumstances change, rather than treated as a one-time form. The report does not announce a specific follow-up study or timeline.
For readers, the immediate takeaway is to discuss preferences with the person who may be asked to make decisions and to make sure written instructions reflect current wishes. Whether such conversations reduce the gap seen in the survey remains untested in the findings described here.
Key Questions
What did the survey find about dementia and life-sustaining care?
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. The difference remained even when an advance directive requested treatment.
Did an advance directive 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 that treatment. The survey also found higher recommendations for patients without dementia when their directive requested life-sustaining care.
Was this research based on actual hospital treatment decisions?
No. Researchers used an online survey experiment with scenarios about hospitalized older adults. The results describe survey participants’ recommendations, not observed care or patient outcomes.
What does the study suggest about choosing a surrogate?
The researchers said a surrogate’s own preferences influenced recommendations. They encourage people to discuss their values with the person they choose, in addition to recording wishes in an advance directive.
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