Advancing Advance Care Planning

The Colorado Health Foundation, a nonprofit focused on improving the health of Coloradans, has funded projects across the state to increase engagement in advance care planning (ACP). Our team has been working in different areas of the state and we have learned about the different projects taking place across geographically, ethnically, and socioeconomically diverse communities. Not surprisingly, the approach of these different granted programs is as diverse as the communities in which they take place. We learned about a project wherein every team member is a notary and can ensure documents are legally signed even in the absence of witnesses. (Colorado requires only a signature of the person completing the medical durable power of attorney [MDPOA]. For living wills or more comprehensive advance directives, two witnesses or one notarized signature is required.) Another group is training hospice volunteers to work within the hospice program and in the urban Denver community. Our own program has adapted Lum's group ACP visit model to the community setting and the groups are facilitated by trained lay navigators. ¹ During a recent group session with the municipal employees of a small mountain town, we began the discussion with an open ended question—“What do you think about when you hear the term advance care planning?” Participants ranged from people doing construction for the town to high ranking bureaucrats. The answers were just as varied—“pulling the plug,” “DNR,” “dementia,” and “what to do with my stuff.” These responses reflected to me the wide range of understanding of ACP as well as some of the cultural influences that shape perceptions of this process. And the great challenge of developing an evidence base broad enough to meet diverse populations at different stages of understanding and readiness.

In this month's Journal of Palliative Medicine issue, three articles describe three very different approaches to the issue of ACP, meaningful additions to this needed evidence base. The first study is from Tarzian and Cheevers, describing the Maryland experience with the state's Medical Orders for Life-Sustaining Treatment. Based on the results of a community stakeholder process, the state requires documentation of preferences for certain patients by law (e.g., hospice, nursing, and facility dialysis). Patients and their caregivers can opt out of these conversations, in which case providers will document that full resuscitation efforts are preferred (unless providers deem these efforts to be medically futile). This top down approach yielded impressive results with an 84% completion rate and very small number of patients/caregivers opting out of these conversations (<3%). Of note, the unilateral provider decision to designate a patient “do not attempt resusciation (DNAR)” was extremely rare, <1%, once again demonstrating that fears of “death panels” are unwarranted.

Another article in this issue (Nedjat-Haiem et al.) conducted a community-based randomized control trial of an ACP intervention led by social workers focusing on older Latinos with serious illness in the southwestern United States. The social workers were bilingual and the intervention arm utilized motivational interviewing techniques and connected participants with other needed resources. The intervention framework had features in common with my own work with Latinos facing serious illness, although our intervention utilizes lay navigators rather than social workers. ² Their main objective was to determine feasibility of conducting a trial of this intervention. With an exceptional enrollment and retention rate and subjective satisfaction measures suggesting positive experiences with the intervention, the authors reasonably conclude that a larger trial would be feasible. The authors did not include measurement of actual ACP documentation in either arm.

Finally, Periyakoil et al., published results from a randomized controlled trial of web-based ACP. The usual care arm was a traditional advance directive form that is the standard for the state of California versus the Letter Project—a letter format advance directive that includes an opportunity for persons completing it to express what matters most to them. This study did not target a seriously ill patient population and accrued a highly educated, ethnically diverse cohort of participants. Despite ∼75% of the sample having at least a college education, participants seemed to prefer the 5th grade reading level Letter Project form over the 12th grade reading level California standard advance directive. Participants were more likely to report that the Letter Project advance directive helped them express their values and how they make decisions in their family in the follow-up survey.

Now more than 20 years on from the Patient Self-Determination Act, we seem to be maintaining a somewhat consistent rate of 25% of the adult population completing an advance directive (with the exception of some unique communities such as LaCrosse, WI, who have realized near complete penetrance of ACP). We have the tools and a growing evidence base for interventions—some lending themselves to be wholly patient facing such as the Letter Project and Sudore's Prepare for Your Care web-based ACP. ³ And some more intensive, interactive interventions including Nedjat-Haiem's community based social worker-led ACP intervention. Among the challenges ahead we must consider is first, how do we achieve wide-spread implementation? How do we make this the standard for health and wellness and bring about the culture change seen in LaCrosse on a nationwide scale? And how do we target the right intervention to the right population? And finally, how do we measure success—what outcomes matter, documentation, and satisfaction? Both trials already described measured satisfaction using different scales making comparisons challenging. Sudore has developed a validated measure of engagement, which we are using in our statewide community-based group ACP project. ⁴ The Patient Centered Outcomes Research Institute will be announcing its funding soon for comparative effectiveness trials of ACP interventions that may help elucidate answers to some of these questions. Until then, we as a field must appreciate what we have accomplished to date and continue to strive toward the horizon of what is possible.