To the Editor:
According to an article in the British Journal of Medicine, a randomized control trial of 309 patients showed that advanced care planning improved end-of-life care and reduced stress, anxiety, and depression in patients and their family members.
1Unfortunately, there are still a surprisingly large number of individuals who do not engage in advance care planning. For instance, one study in Health Affairs found that only 36.7% of people in the U.S. had completed an advance directive.
- Detering K.
- Hancock A.
- Silvester W.
The impact of advance care planning on end of life care in elderly patients: randomized controlled trial.
BMJ. 2010; 340: c1345
2Another study published in the American Journal of Preventive Medicine in 2014 found that of 7946 respondents, 73.7% did not have an advance directive because of lack of awareness.
- Yadav K.
- Gabler N.
- Cooney E.
- et al.
Approximately one in three US adults completes any type of advance directive for end-of-life care.
Health Aff. 2017; 36: 1244-1251
3Clearly, there is an awareness gap when it comes to advance care planning.
- Rao J.
- Anderson L.
- Lin F.
- Laux J.
Completion of advance directives among U.S. Consumers. American Journal of Preventive Medicine.
January. 2014; 46: 65-70
Organizations such as Respecting Choices in Wisconsin and Honoring Care Decisions
4in New Hampshire have helped close this gap at the national and local level. With recent efforts to encourage locals to complete advanced directives, the rate of advanced directive completion in the Vermont and New Hampshire regions in January 2016 increased to 42%.
Honoring Care Decisions.
Date accessed: April 10, 2019
5However, in discussions with Honoring Care Decisions, we determined that some local communities were still not receiving as much outreach as hoped primarily due to limited resources and access to care. We decided to reach out to individuals who were in a rehabilitation program receiving therapy for opioid use disorder. Our reasons for reaching out to this group were twofold. First, mortality rates are increased in individuals with opioid use disorder, so we thought that advance care planning discussions may be particularly beneficial to this group.
Upper Connecticut river valley. “Advance Care Planning Survey Results.”.
Upper Connecticut river valley. “Advance Care Planning Survey Results.”.
6Second, we hypothesized that individuals in this group were likely to have below-average rates of advance directive completion. These recovery groups were reportedly not reached by the hospital advance care planning program, which primarily used health visits and local community events, such as religious gatherings, to engage in advance care planning. Thus, we suspected that our selected group members may have had fewer opportunities to engage in advance care planning.
- Hser Y.
- Mooney L.
- Saxon A.
- et al.
High mortality among patients with opioid use disorder in a large healthcare system.
J Addict Med. 2017; 11: 315-319
Our goals were to provide information regarding advance care planning to this group and also to gather information about how this population perceives and completes advance care planning. We are unaware of literature that explores the perceptions and rates of advance care planning specifically in individuals who have substance use disorder.
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
7branch 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.
Table 1Rates of Advance Care Planning Session Attendance and Advance Directive Completion and Effectiveness of Advance Care Planning Discussion
|Prior Session Attendance and Advance Directive Completion|
|Have you attended a presentation or program to learn more advance care planning? (n = 58)||13.8%||86.2%|
|Do you already have an advance directive? (n = 55)||74.5%||25.5%|
|Does your health care provider have a copy of your advance directive? (n = 11)||90.9%||9.1%|
|Effectiveness of Advance Care Planning Discussion|
|Very confident/useful||Somewhat confident/useful|
|Attendee's confidence that he/she will update or complete an advance directive in the next 30 days (n = 54)||44.5%||16.7%|
|Usefulness of the information presented? (n = 57)||52.6%||45.6%|
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.
Disclosures and Acknowledgments
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.
- The impact of advance care planning on end of life care in elderly patients: randomized controlled trial.BMJ. 2010; 340: c1345
- Approximately one in three US adults completes any type of advance directive for end-of-life care.Health Aff. 2017; 36: 1244-1251
- Completion of advance directives among U.S. Consumers. American Journal of Preventive Medicine.January. 2014; 46: 65-70
- Honoring Care Decisions.(Available from)https://www.dartmouth-hitchcock.org/supportive-services/honoring-care-decisions.htmlDate accessed: April 10, 2019
- Upper Connecticut river valley. “Advance Care Planning Survey Results.”.2016
- High mortality among patients with opioid use disorder in a large healthcare system.J Addict Med. 2017; 11: 315-319
- Recover Together.(Available from)
Published online: May 20, 2019
T. K. and N. A. contributed equally to this manuscript.
© 2019 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc.
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- Corrigendum to Advance Care Planning Discussions in a Substance Use Disorder Recovery Program [Journal of Pain and Symptom Management 58 (2019) e3–e6]Journal of Pain and Symptom ManagementVol. 59Issue 2
- PreviewThe authors regret in the article, “Advance Care Planning Discussions in a Substance Use Disorder Recovery Program” published in the September issue of JPSM, (Vol 58, No 3, e3-e6) the values in Table 1 were flipped. They should have been listed as 25.5% for Yes and 74.5% for No. A corrected table appears below: