Advance Care Planning Discussions in a Substance Use Disorder Recovery Program

Our initiative involved debunking myths around advance care planning and encouraging group members to fill out their own advance directive. We sought to empower the individuals to have these conversations with their loved ones and their primary care physician.

We led six 30-minute discussions about advance care planning at a Recover Together branch in New Hampshire. Recover Together is a local treatment center that provides weekly group therapy sessions to people recovering from substance use. They exist in eight states across the country, and their purpose is to provide treatment for opiate use and weekly group therapy sessions to help maintain sobriety. There were approximately 10 to 15 attendees at each session. Each discussion began with a series of questions to promote conversation. These questions ranged from “what activities make you feel alive?” to “if you could control three things about your last day of life, what would they be?” Then, we provided details about advance care planning, such as choosing a health care agent, identifying one's values, beliefs, and preferences, and thinking about end-of-life scenarios. Next, we took turns going around the group discussing who they would identify as a potential health care agent and why. We then discussed the surrogacy law in New Hampshire and provided everyone with a New Hampshire or Vermont advance directive, depending on their state of residence. At the end of each session, we asked group participants to complete a paper-based survey, so that we could learn about their reactions to the session. The survey was designed by Honoring Care Decisions to ascertain baseline knowledge of advance care planning and to help determine the efficacy of the group session. 58 individuals completed the optional survey.

We obtained approval from the Committee for the Protection of Human Subjects. The study was designated as secondary research for which consent was not required.

For 86 percent of the participants, this was their first time ever attending a presentation about advance care planning (Table 1). Only 25 percent (14/55) of the participants had already completed an advance directive (Table 1). Only 10 individuals in total had given a copy of their advance directive to their health care provider (Table 1), and six of these individuals had discussed their preferences with their health care agent. Of the surveyed participants, 72 percent said they felt either very confident or somewhat confident that they were going to complete an advance directive in the next 30 days (Table 1). Over 98 percent of participants said that they found the session very useful or somewhat useful (Table 1). Nearly three-quarters (70.7%) of participants rated the importance of advanced care planning as either a 4 or 5 (with 5 being the most important), and 69 percent of participants said that they would recommend this presentation to others.

This project provides insights into the state of advance care planning in a population of individuals receiving therapy for opiate use disorder in New Hampshire. Moreover, it identifies an effective way to introduce the concept of advance care planning to them. We found the overall interest and appreciation for advance care planning to be very high and the rate of advance directive completion in this group to be quite low. These results suggest that individuals with substance use disorder should be provided with additional outreach and resources on this important issue. Additionally, even amongst those who had completed advance directives, few actually shared these with their physicians and even fewer discussed these with their listed health care agents. This further highlights the need for not only filling out an advance directive, but also the need for goals of care conversations and advance directive discussions with family members, health care agents, and physicians.

Qualitatively, these discussions were extremely well received by group participants. Group participants were very involved in the conversation, often providing personal and insightful perspectives into the discussion. Although we did not measure specific demographics, such as the ages of the group members, there was a large age range among group members. The discussions further fostered the bond between these group members, as individuals were able to learn personal and insightful details about their own values and beliefs. The depth of the discussions was often so great that it often came as a surprise even to the group counselor. For example, the group counselor occasionally would warn us that some of the groups were known to be on the quieter side. Surprisingly, many of these quieter groups turned out to produce lively and animated discussions.

Given that the Recover Together groups occur throughout the state of New Hampshire and also throughout the country, we think that this model could be scaled up so as to reach more participants. We propose that group counselors or volunteers be trained in advance care planning facilitation so that they can continue to lead these important discussions.

One limitation of our project is that we were unable to determine how many individuals actually completed their advance directive after the session. This challenge could be addressed by closely following up with participants or by having the participants report back to the group counselor after a certain period of time. Future projects should keep this limitation in mind and hope to maximize follow-up. We also did not obtain demographic data about the study group. Future projects should obtain such data, so that we can further ascertain how demographics, such as socioeconomic status and age, are associated with rates and perceptions of advance care planning in this population. Finally, our project only sampled 58 individuals. The generalizability of this project is therefore limited in part by the small sample size. Future studies should strive to obtain a larger number of participants from more than one location.

This project would not have been possible without the help of many: Dr. Joseph O'Donnell, Dr. Sanders Burstein, Maria Koehler, Teryl Desrochers, and Heather Prubish and Joe Demers at Recover Together.