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A University of Colorado Anschutz study of nearly 6,000 U.S. adults 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 influenced recommendations, but did not erase the difference; surrogate decision-makers’ own 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, led by researchers at the University of Colorado Anschutz and published in JAMA Network Open, suggests that a documented preference may not by itself determine how others recommend care.
Participants reviewed scenarios about seriously ill, hospitalized older adults. Researchers varied whether the patient had dementia, what an advance directive said, whether a physician recommended treatment, and the surrogate decision-maker’s preferences. The survey measured participants’ recommendations in those hypothetical cases; it did not track actual treatment delivered to 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 treatment and fell to 7.6% when it requested comfort-focused care. For patients without dementia, the corresponding figures were 38.9%, 66.3% and 14.4%.
Lead author Lauren Hersch Nicholas, a professor of medicine in the university’s division of geriatric medicine, said dementia status continued to shape recommendations when directives asked for treatment. She said assumptions about life with dementia may affect how decision-makers view quality of life, potentially leaving a patient’s wishes at odds with the recommendation made on their behalf.
When Directives Meet Surrogate Judgment
The findings matter because a person who becomes unable to communicate may depend on a surrogate to interpret and act on their preferences. The survey suggests that the written directive is one influence, not the only one: dementia status and the surrogate’s own preferences also affected recommendations.
This does not establish that patients with dementia routinely receive care contrary to their wishes. The study examined responses to hypothetical scenarios, not clinical records or actual outcomes. Still, it highlights a practical concern for patients and families: a directive may be less informative if the chosen decision-maker does not understand the patient’s values or interprets quality of life differently.
Nicholas said selecting a surrogate who understands the patient’s priorities and is willing to follow them is part of advance care planning. The research also points to the value of discussing specific preferences, rather than relying only on a completed form.
advance directive form for dementia
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How the Survey Tested Care Choices
An advance directive records a person’s preferences for future medical care if they cannot communicate or make decisions. A surrogate is someone authorized or selected to make health care decisions for a patient who cannot do so. In the study, researchers presented participants with variations on these factors to see how each related to treatment recommendations.
The results show that directives were associated with substantial differences in recommendations. For both patient groups, participants were more likely to recommend life-sustaining treatment when a directive requested it and less likely when it requested comfort-focused care. However, overall recommendations were lower in the dementia scenarios, including when the directive asked for life-sustaining care: 41.0% for patients with dementia compared with 66.3% for patients without dementia.
The report cites prior research suggesting that more than two-thirds of older adults may face a situation in which another person must make end-of-life medical decisions for them. That background helps explain the relevance of surrogate choices, though the current survey does not measure how often real-world care follows or conflicts with a directive.
“Having a document that clearly states your wishes mattered. But so did the preferences of the person making the decision.”
— Lauren Hersch Nicholas, study lead author and professor of medicine at the University of Colorado Anschutz School of Medicine
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What the Survey Cannot Establish
The study measured survey participants’ recommendations in hypothetical scenarios. It does not show whether actual clinicians or surrogates make the same choices in real cases, or whether patients with dementia are more likely to receive treatment that conflicts with their documented wishes. The reported percentages describe the share of scenarios in which participants recommended life-sustaining treatment, not the share of patients who received it.
The supplied report does not provide enough detail to assess how responses varied across participant groups or how the physician recommendation affected each scenario’s results. It also does not establish why participants responded differently to dementia: the researchers suggest assumptions about quality of life may play a role, but the survey findings do not prove that explanation.
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Keeping Care Preferences Current
The researchers argue that advance care planning should include ongoing conversations about what matters to a person, not just the completion of a document. Nicholas said patients should check that their chosen surrogate understands their wishes and that those preferences still reflect what they want as health and circumstances change.
The study’s findings do not prescribe a particular medical choice. They underscore that directives, surrogate understanding and personal values may all shape recommendations when a patient cannot speak for themselves. Further research would be needed to determine how these survey patterns relate to decisions and treatment in clinical practice.
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Key Questions
What did the study find about dementia and life-sustaining treatment?
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 the directive requested treatment.
Did advance directives affect recommendations?
Yes. Recommendations for life-sustaining treatment were more common when a directive requested that care and less common when it requested comfort-focused care. The directive did not remove the difference associated with dementia status.
Were these actual treatment decisions?
No. The researchers surveyed nearly 6,000 U.S. adults using hypothetical scenarios. The study reports recommendations, not treatment delivered to patients in hospitals.
What role did surrogate preferences play?
The study found that the preferences of the person making decisions also shaped recommendations. The authors say advance care planning includes choosing someone who understands the patient’s values and discussing those values with them.
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