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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, including when a directive requested treatment. Advance directives affected recommendations, but patient dementia status and surrogate preferences also mattered.
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 with dementia than for a patient without dementia, even when an advance directive requested treatment. The study, published in JAMA Network Open, suggests that a patient’s dementia status can influence surrogate decision-making alongside documented wishes.
Researchers presented participants with scenarios about seriously ill, hospitalized older adults and varied whether the patient had dementia, what an advance directive said, and whether a physician recommended treatment. Participants were asked what care they would recommend. The experiment measured responses to hypothetical situations; it did not track actual clinical decisions or patient outcomes.
For a patient 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 treatment, and was 7.6% when it requested comfort-focused care. For patients without dementia, the corresponding shares were 38.9%, 66.3% and 14.4%.
The directive changed recommendations in both groups, but did not erase the difference associated with dementia status. The researchers also found that the decision-maker’s own preferences influenced recommendations. The study was led by Lauren Hersch Nicholas, a professor of medicine in the University of Colorado Anschutz School of Medicine’s division of geriatric medicine.
Why Directives May Not Settle Care
The findings point to a gap between documenting a preference and having that preference followed in a difficult medical situation. A directive requesting life-sustaining treatment was associated with more recommendations for that care, but participants’ recommendations still varied with the patient’s dementia status. The results suggest that how a decision-maker views life with dementia may shape their interpretation of what care is appropriate.
This matters for people who may one day be unable to communicate or make their own medical decisions, and for the relatives or other people chosen to speak for them. The study does not show that actual clinicians or surrogates routinely disregard directives. It does show, within the survey scenarios, that a written instruction was not the only factor guiding recommendations.
The study’s authors argue that selecting a surrogate who understands the patient’s values is part of planning for future care. A named decision-maker may bring personal views about treatment and quality of life to a decision, especially if the patient’s wishes are not familiar or seem difficult to apply to a particular situation.
advance directive medical decision guide
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How the Survey Tested Decisions
An advance directive records a person’s preferences for future medical care in case they cannot communicate those wishes. A surrogate decision-maker is someone authorized or selected to make health care decisions for a patient who cannot make or communicate them. In the experiment, researchers varied the directive’s stated preference between life-sustaining treatment, comfort-focused care, or no directive.
The results show that directives were associated with different recommendations: requests for life-sustaining treatment increased those recommendations, while comfort-focused instructions reduced them. Yet participants recommended life-sustaining treatment more often for patients without dementia across all three directive conditions. The study, titled “Surrogate Decision-Making for Older Adults With and Without Dementia,” was published in 2026 in JAMA Network Open (DOI: 10.1001/jamanetworkopen.2026.37691).
News-Medical’s account of the research cites prior work suggesting that 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. That figure describes the potential need for surrogate decision-making, not the share of people who have completed an advance directive.
“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 at the University of Colorado Anschutz School of Medicine
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What the Survey Cannot Establish
The survey measured recommendations in hypothetical scenarios, not treatment delivered in hospitals. It cannot establish how often dementia status changes real-world decisions, whether a particular directive would be followed in practice, or how patients themselves would assess the choices presented.
The supplied report does not provide enough detail to assess every feature of the sample, including how closely it represents U.S. adults as a whole. It also does not specify in the summary how physician recommendations affected the results across the different scenarios. The reported percentages are scenario-level recommendations; they should not be read as rates of actual treatment among patients with dementia or without it.
The findings identify an influence in participants’ responses, but do not explain each person’s reasoning or establish that dementia alone caused a particular recommendation. Further evidence would be needed to determine how these patterns translate into clinical practice and whether different forms of planning or communication change actual care.
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Planning Beyond the Written Directive
The researchers’ stated implication is to treat advance care planning as an ongoing conversation, rather than a one-time document. Nicholas said people should discuss what matters to them with the person they choose as a surrogate and revisit those conversations as health and circumstances change.
For readers, the study does not offer a specific clinical recommendation or say which treatment choice is right for an individual. It highlights the role a decision-maker’s understanding may play if someone cannot speak for themselves. The next question for research is whether clearer communication of patients’ values can reduce the gap between their documented preferences and the recommendations made on their behalf.
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Key Questions
What did the study find about dementia and life-sustaining treatment?
In a randomized survey experiment, 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. The difference remained when a directive requested life-sustaining care.
Did advance directives affect participants’ recommendations?
Yes. For patients with dementia, recommendations for life-sustaining treatment were higher when a directive requested it than when there was no directive, and lower when the directive requested comfort-focused care. Similar patterns appeared in scenarios involving patients without dementia.
Does the study show that hospitals ignore advance directives?
No. The research surveyed people responding to hypothetical scenarios. It did not examine hospital records or establish how often actual clinicians or surrogates follow or depart from a patient’s directive.
What does the research say about choosing a surrogate?
The researchers said a decision-maker’s own preferences influenced recommendations. They emphasized discussing a person’s values with the chosen surrogate, so that person has a clearer understanding of the patient’s wishes.
Who conducted the study and where was it published?
The study was led by Lauren Hersch Nicholas of the University of Colorado Anschutz School of Medicine and published in JAMA Network Open in 2026. Its title is “Surrogate Decision-Making for Older Adults With and Without Dementia.”
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