An advance care planning (ACP) intervention increased both documentation of end-of-life preferences and potentially burdensome care. These findings from an NIA-funded clinical trial, published in JAMA Internal Medicine, underscore the importance of comprehensive support for those with serious illness and prioritizing patient-relevant outcomes in ACP research.
Only one in three people in the United States has a plan in place for their future health care. Many have misconceptions about ACP, which involves discussing and preparing for future medical decisions. The process can include creating legal documents, such as advance directives.
Led by researchers at Johns Hopkins — who noted that primary care settings play a key role in ACP — the SHARING Choices trial was designed to compare an intervention with usual care. The intervention included providing an introduction letter, access to a trained ACP facilitator, checklists, and shared access to an information portal and print materials. The trial took place in 2021 and 2022 in the mid-Atlantic U.S. and involved 51 primary care practices and nearly 65,000 patients. Among these, 19 practices (23,000 patients) implemented the SHARING Choices intervention while 32 practices served as controls with usual care.
When comparing SHARING Choices practices with controls, the researchers found that 12% of patients in the intervention group documented new end-of-life preferences, such as advance directives or medical orders for life-sustaining treatment. This was approximately double the rate observed in the control group (6.6%). However, the intervention had smaller effects for Black participants, those age 75 and older, and individuals with dementia. The trial also showed that within the SHARING Choices intervention group, a subgroup of participants who died from a serious illness experienced an increase in potentially burdensome care at end of life. Examples include gastrostomy (feeding) tube insertion and mechanical ventilation — interventions that can prolong suffering or cause harm at the end of life.
The researchers highlighted the complexity of end-of-life decision-making, which is shaped by individual, family, and setting-specific factors. Some of those factors cannot be readily measured, leaving unknowns, such as whether care was consistent with wishes, and that limits the findings of this trial. Despite the clear need for ACP, few clinical trials have examined its implementation in large, diverse health care systems. The findings from this trial underscore the importance of ongoing discussions and support for people making end-of-life decisions.
This research was funded by NIA grant R33AG061882.
Reference: Wolff JL, et al. Advance care planning, end-of-life preferences, and burdensome care: A pragmatic cluster randomized clinical trial. JAMA Internal Medicine. 2025;185(2):162-170. doi:10.1001/jamainternmed.2024.6215.
