By Stacey Kusterbeck
Despite ample evidence that advance care planning can benefit patients, families, and healthcare systems, most older adults have not completed it. Many clinicians and researchers are trying to find effective strategies to increase advance planning rates.
A group of researchers from the University of Colorado School of Medicine compared two interventions to increase advance care planning engagement.1 One group of 55 patients participated in two group visits, which encouraged ongoing conversation about advance care planning. A control group of 55 patients received only mailed materials about advance care planning.
To learn how patient experiences and engagement differed for the two groups, the researchers surveyed 110 patients before the intervention and 100 patients six months afterward. The researchers also interviewed 15 group visit participants and eight mailed materials participants.
Both interventions encouraged patients to consider their end-of-life preferences. The mailed materials made patients aware of the topic in general. Some talked about how it made them consider their end-of-life care wishes for the first time. However, group visit participants reported greater readiness to actually sign official paperwork about their wishes and name a decision-maker, compared to participants who received mailed materials.
“Group visit patient engagement was much more action-oriented,” says Caroline K. Tietbohl, PhD, MA, the study’s lead author and an assistant professor in the Division of Geriatric Medicine at University of Colorado School of Medicine. Group visit participants identified two factors that motivated them to actually complete advance care planning documentation and to discuss those documents with their decision-makers:
• having access to a dedicated time to discuss advance care planning;
• interaction with fellow patients.
“Participation in the group visits tended to be ‘paid forward’ to other family members,” adds Tietbohl. Many group visit patients shared what they learned with loved ones who had not completed their own advance care planning documentation. Sending mailed materials is inexpensive and requires few personnel to implement. However, this approach only led to increased awareness, not greater advance care planning documentation.
Bioethicists can assist clinicians in weighing the various ethical considerations related to advance care planning. “Ethicists can help clinics balance the tradeoff between intervention costs of implementation, reach and representativeness, and emphasis on person-centered autonomy,” says Tietbohl.
Another group of researchers looked at whether advance care planning actually made a difference in whether patients got the care that they desired at the end of life. “Advance care planning has been around in its current form for about three decades,” notes Rachel Lenko, PhD, the study’s lead author and an assistant professor in the School of Nursing at Calvin University in Grand Rapids, MI. However, there was limited research examining the usefulness of advance care planning for achieving patients’ desired end-of-life care in a diverse sample of American older adults.
“Historically, racially minoritized groups have had lower rates of both advance directives and goals-of-care conversations than white groups,” says Lenko.2 Lenko and colleagues wanted to look at two aspects of advance care planning: advance directives (in which patients complete a legal document identifying their wishes for future treatment in the event that they are no longer able to articulate those wishes themselves) and goals-of-care conversations. The researchers analyzed data from 2,048 older adults from 2012-2018 using the biennial Health and Retirement Study.3 Different proportions of white, Black, and Hispanic decedents received goal-concordant care (83.1%, 75.3%, and 71.3%, respectively).
Older Black adults who used advance directives were more likely to receive perceived goal-concordant end-of-life care than Black older adults who did not use advance directives. “The finding about Black older adults indicates that advance directives may continue to be a useful tool in achieving improved end-of-life care for some groups,” suggests Lenko. Clinicians who want to increase advance care planning rates can work on improving their serious illness communication skills, learn about their implicit biases, and bring cultural humility to each patient interaction, says Lenko. “However, collective action is required to tackle systemic inequities within and outside of the healthcare system, in order to improve trust and outcomes for patients of minoritized groups”.
- Tietbohl CK, Ritger C, Jordan S, et al. A mixed-methods comparison of interventions to increase advance care planning. J Am Board Fam Med 2024;37:215-227.
- Lenko R, Voepel-Lewis T, Robinson-Lane SG, et al. Racial and ethnic differences in informal and formal advance care planning among U.S. older adults. J Aging Health 2022;34:1281-1290.
- Lenko RA, Hoffman GJ, Robinson-Lane SG, et al. Achieving goal-concordant care: Formal and informal advance care planning for white, Black, and Hispanic older adults. J Am Geriatr Soc 2024;May 18. doi: 10.1111/jgs.18971. [Online ahead of print].
