New Study Reveals Mixed Results in Advance Care Planning for Older Adults

A recent study published December 2 on JAMA Network aimed at improving end-of-life planning for adults over 65 has shown mixed results, shedding light on both the effectiveness and potential unintended consequences of advance care planning (ACP) in primary care settings. Led by Health Policy and Management professor Jennifer L. Wolff, PhD ’03, MHS ’95, the study assessed a multicomponent ACP intervention across 51 primary care practices to help patients document their preferences and reduce burdensome end-of-life care. 

The trial, SHARING Choices, took place between March 2021 and April 2022 and included 64,915 adults from two health systems. The study examines the impact of a structured ACP approach involving trained facilitators who guided patients and families through end-of-life planning and facilitated advance directive documentation. Results of the study suggest that while ACP interventions increased documentation of end-of-life preferences, they also unexpectedly led to a rise in potentially burdensome care among seriously ill patients.

Increased Documentation of End-of-Life Preferences 

SHARING Choices is an intervention designed to not only improve quality of care but also support patients in making their wishes known regarding future medical treatment. The study showed that participants in the intervention group were significantly more likely to have new end-of-life preferences documented in their electronic health records (EHRs) than those in the control group, which received usual care. For example, 12% of patients in the intervention group achieved new documentation compared to just 6.6% in the control group. The rates of documentation were even higher among individuals with dementia, indicating that targeted ACP efforts may be effective in promoting decision-making among vulnerable populations. 

“Advance care planning is vital for ensuring that patients’ end-of-life wishes are respected, especially in primary care where long-term relationships with patients make it an ideal setting for these conversations. SHARING Choices offered the structure needed to bring these important discussions into focus for patients and their families,” said Wolff.  

Unintended Consequences in End-of-Life Care 

Despite the positive outcomes in documentation, the study found a surprising increase in potentially burdensome end-of-life care among patients in the intervention group. The potentially burdensome care included medical interventions that either prolonged suffering or caused discomfort without significantly improving quality of life for the patient. Among the subset of Maryland residents with serious illness who died within the observation period, 28.8% of those in the intervention group received burdensome care, compared with 20.9% in the control group. 

The researchers noted that the intervention may have inadvertently led some patients to opt for life-sustaining treatment that ultimately prolonged suffering, a complex and counterintuitive result. “This finding underscores that documenting end-of-life preferences isn’t always sufficient on its own,” Wolff added. “End-of-life care decisions are deeply personal, and patients may choose different paths depending on circumstances. However, it does emphasize the need for continuous, nuanced conversations between patients and their health care providers.” 

Challenges in Advance Care Planning for Black Older Adults and Those with Dementia

One of the study’s key objectives was to increase ACP, particularly for underrepresented groups, including Black older adults and patients with dementia, who traditionally have lower rates of documented end-of-life preferences. SHARING Choices included specialized training on equity issues for facilitators, which resulted in a greater engagement among Black patients and patients with dementia. However, documentation rates remained lower for these subgroups—a reflection of longstanding disparities in health care access and decision-making support.

Interventions included facilitators calling most of the patients by telephone and using patient portals. They initially targeted those with dementia and patients who had an upcoming annual wellness visit. Despite that, only approximately 5% of the intervention patients ever engaged in an ACP conversation with the facilitators. This limited uptake highlights the ongoing barriers to ACP in primary care, including time constraints and the need for more personalized support for diverse patient populations.

Implications and Future Directions

The SHARING Choices trial underscores the complexity of implementing ACP in primary care settings and the need for a more holistic approach to support patients’ end-of-life preferences. The study’s findings suggest that while structured ACP interventions can effectively document patient wishes, additional measures are required to ensure these preferences translate into meaningful outcomes, especially for seriously ill patients.

“Advance care planning in primary care requires more than a one-size-fits-all approach,” noted the research team. “We need to consider patient-relevant outcomes and prioritize continuous, compassionate support for those facing serious illness, particularly among vulnerable populations.”

Future research should be directed toward how to integrate ACP with comprehensive care models that take into consideration documentation and the quality of patient-clinician communication, patient satisfaction, and alignment with patients’ true preferences. Addressing these factors will help ensure that ACP interventions promote better care and contribute to high-quality, person-centered health care. The SHARING Choices study sheds light on the importance of advance care planning while also highlighting challenges that researchers and health care providers will need to continue to address. As the population ages, effective ACP models will become increasingly important in guiding end-of-life care that honors patients’ values and preferences.