By Stacey Kusterbeck
Advance care planning (ACP) has shown promise for helping people with the experience of living with serious illness. “However, the impact and uptake of interventions to improve ACP has been inconsistent. There are notable implementation and access gaps driven by system failures and clinician barriers,” says Joshua Lakin, MD, a senior palliative care physician at Dana-Farber Cancer Institute and Brigham & Women’s Hospital and an associate professor of medicine at Harvard Medical School.
To address these gaps, researchers have tried a multitude of different interventions to improve ACP. Lakin and colleagues aimed to identify interventions that employ human facilitators to address particular gaps in ACP. The researchers reviewed 28 articles on facilitated ACP interventions.1 Studies used a nurse facilitator, trained social workers, multiple facilitators, or facilitators from various other backgrounds (such as peer mentors or care coordinators). Twenty-five studies included patients with a high risk of need for medical care or patients with serious or chronic illness at the end of life. Four articles included patients from marginalized populations.
“We were impressed to see how researchers leaned into people’s sources of support when facilitating ACP interventions,” says Lakin. Most of the interventions included patients and their caregivers.
Measured outcomes tended to include dyad congruence or shared decision-making effects. This showed that researchers were interested in how interventions affected decision-making not just for patients, but also for caregivers. “This struck us as important, given that the evolving definition of ACP is more focused on an iterative process for preparing us all — clinicians, patients, and caregivers alike — for an uncertain future of medical decisions in serious illness, rather than making and recording specific medical decisions far in advance,” says Lakin.
For clinicians, reflecting on why marginalized populations engage in ACP relatively infrequently is important. “Ongoing efforts to help clinicians build quality improvement skills to specifically target issues in healthcare systems, such as inability to meet people outside of clinic hours, could be helpful,” adds Lakin.
Ethicists can facilitate more equitable ACP, with a focus on marginalized populations. “Providing an ethical argument for why doing so is important, valuable, and a priority is a critical role for ethicists in a highly financially driven healthcare system,” says Lakin. “It seems our ethics committee and the ethicists we work with are stretched too thin. And, in my experience, when resources are limited, those who are disadvantaged tend to get less than those who are advantaged.”
Clinicians’ busy schedules, lack of confidence in communicating about end of life, and the belief that patients will not want to talk, all get in the way of advance care planning. For low-income patients, there are additional barriers. “Individuals from low socioeconomic status backgrounds often have had fewer opportunities to have a voice in what kind of medical care they would want in case of an emergency where they cannot speak for themselves,” says Christine Kimpel, PhD, RN, MA, a postdoctoral research fellow at Vanderbilt University School of Nursing.
Kimpel interviewed 20 adults aged 50 years and older with annual income less than $20,000 to learn what researchers should consider when developing ACP interventions.2 “This process of seeking guidance from the population of interest was essential to ensure that future interventions will be relevant and meaningful to similar communities,” says Kimpel.
The interviews revealed two main themes: The need for a personalized approach based on the individual’s unique situation, and the need for trustworthy advocates. “It makes perfect sense that communities that have been let down in the past would yearn for compassionate professionals who would ensure their needs are met regarding advance care planning,” says Kimpel.
In years of working with older adults with low income, Kimpel has heard countless stories about red tape getting in the way of obtaining needed services. The study participants voiced similar experiences and emphasized the need for someone with expertise to facilitate advance care planning.
Clinicians can step into this role by initiating a conversation, however brief, with patients from low socioeconomic status backgrounds. “A network of advance care planning specialists is needed, who can collaborate with clinicians and have long-form conversations with persons and their families,” adds Kimpel.
References
1. Penumarthy A, Zupanc SN, Paasche-Orlow MK, et al. Facilitated advance care planning interventions: A narrative review. Am J Hosp Palliat Care. 2024; Nov 3. doi: 10.1177/10499091241298677. [Online ahead of print].
2. Kimpel CC, Frechman E, Chavez L, Maxwell CA. Essential advance care planning intervention features in low-income communities: A qualitative study. J Pain Symptom Manage. 2025;69(1):e46-e52.
Advance care planning (ACP) has shown promise for helping people with the experience of living with serious illness. To address implementation and access gaps, researchers have tried a multitude of different interventions to improve ACP.
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