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In a randomized online survey, U.S. adults 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 the study also found that a surrogate’s own preferences mattered.
Survey 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, according to a University of Colorado Anschutz study published in JAMA Network Open. The finding suggests that a patient’s documented wishes may not, on their own, determine how a surrogate decision-maker views care.
The researchers surveyed nearly 6,000 U.S. adults in a randomized online experiment. Participants reviewed scenarios involving seriously ill, hospitalized older adults. The 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 study measured participants’ recommendations in those scenarios; it did not examine actual medical decisions or patient outcomes.
For patients with dementia and no advance directive, participants recommended life-sustaining treatment in 15.6% of scenarios. That share was 41.0% when the directive requested life-sustaining care and 7.6% when it requested comfort-focused care. For patients without dementia, the corresponding figures were 38.9%, 66.3% and 14.4%. Thus, directives were associated with changes in recommendations in both groups, while participants recommended treatment more often for patients without dementia across the reported directive categories.
The research also considered the preferences of the person making decisions for the patient. Lead author Lauren Hersch Nicholas, a professor of medicine at the University of Colorado Anschutz School of Medicine, said the decision-maker’s own views mattered alongside the patient’s directive. The study’s authors argue that advance care planning involves communicating a person’s values to the person who may later speak for them, not simply completing a form.
Why Directives May Not Settle Care
The results point to a potential gap between documented patient preferences and recommendations made by someone else. If a surrogate interprets a patient’s quality of life differently, or relies on personal preferences, the decision may not match what the patient recorded. The survey cannot show how often that gap occurs in clinical practice, but it highlights a factor that families and clinicians may need to discuss when planning for serious illness.
That issue may affect many older adults who could eventually be unable to communicate medical choices. The report cites prior research suggesting that more than two-thirds of older adults may face a situation in which another person needs to make end-of-life medical decisions for them. The current study does not establish that figure or measure the prevalence of care that conflicts with directives; it examines responses to hypothetical scenarios.
For readers, the practical relevance is the distinction between naming a decision-maker and preparing that person to act. A directive can record preferences, while conversations can explain the values behind them. The researchers’ findings suggest that both the document and the surrogate’s understanding may shape recommendations.
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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 or make decisions. A surrogate decision-maker is someone authorized or selected to make health care choices on a patient’s behalf in that situation. In the survey, participants considered scenarios in which these elements could vary, allowing the researchers to compare recommendations under different conditions.
The report, published in JAMA Network Open, focused on hypothetical choices about life-sustaining treatment for hospitalized older adults who were seriously ill. The findings show how survey participants responded to the information presented; they do not establish why each participant made a particular recommendation or predict precisely what clinicians and families would decide in real cases. The researchers reported that physician recommendations were also among the factors varied in the experiment, though the supplied report does not provide detailed results for that factor.
“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
What the Survey Cannot Establish
The study used hypothetical online scenarios, so it is not evidence that patients with dementia are less likely to receive life-sustaining treatment in hospitals. The reported results describe participants’ recommendations, not actual clinical decisions, and the supplied report does not provide enough detail to assess how closely the survey sample represents the wider U.S. population.
The report says physician recommendations were varied but does not give specific figures for their effect. It also does not identify the reasons participants gave for their choices, or show whether the 19-percentage-point difference applied identically across every scenario. The study therefore raises questions about how dementia status and surrogate preferences affect real decisions without resolving them.
The Case for Ongoing Conversations
The researchers call for more sustained advance care planning, including conversations about what matters to a patient and whether a chosen surrogate understands those priorities. Nicholas said people should revisit such discussions as health and circumstances change, rather than relying only on whether a directive exists.
The supplied report does not announce a follow-up study or a scheduled policy change. For now, the published findings add evidence about how adults respond to end-of-life care scenarios; whether similar patterns appear in clinical decisions, and how communication with surrogates might alter those decisions, remain open questions.
Key Questions
What did the study find?
In a randomized online survey, participants were about 19 percentage points less likely to recommend life-sustaining care for a seriously ill patient with dementia than for one without dementia, including when a directive requested treatment.
Did an advance directive affect recommendations?
Yes. For patients with dementia, participants recommended life-sustaining treatment in 15.6% of scenarios with no directive, 41.0% when a directive requested treatment, and 7.6% when it requested comfort-focused care. These are survey responses, not rates of treatment in hospitals.
Were these real patient decisions?
No. Participants responded to hypothetical scenarios in an online survey. The study did not track actual care, clinical outcomes, or whether patients’ documented wishes were followed in practice.
What did researchers say people can take from the findings?
Lead author Lauren Hersch Nicholas said advance care planning should include conversations with the person who may make decisions, so that person understands the patient’s values as well as their written preferences.
Source: rss
