Enhancing Shared Decision Making in a Chronic Population. Use of an Advance Directive Decision Aid for Patients with Heart Failure and Their Caregivers

Benton, Emily; Metzger, Maureen; Hollen, Patricia; Allen, Larry; McIlvennan, Colleen

Background Heart failure (HF) is a costly, progressive, symptomatic, and deadly condition affecting more than 6 million people in the United States. Despite evidence that advance care planning (ACP), including completion of an advance directive (AD), enhances decision-making quality and patient experience, completion rates remain low. ACP decision aids have been shown to improve the quality of decisions in other chronic illnesses, yet few have been tested in the HF population. Purpose This pilot study was designed to test the feasibility and acceptability of an Advance Directive Decision Aid (ADDA) in hospitalized patients with HF and their designated caregivers. The secondary aim was to describe the levels of decisional conflict (DC) and decisional regret (DR) associated with participating in ACP discussions and consideration of completing an AD. Methods Convenience sampling was used to recruit 30 dyads (patients with HF and their designated caregivers) from an academic medical center. Feasibility was assessed by tracking the enrolled, ineligible, and refusal rates, in addition to the time to deliver the intervention. Acceptability was assessed via completion of a follow-up survey and participation in an exit interview. The dyads were evaluated for DC and DR following delivery of the ADDA. Results For enrolled patients, mean age was 56.5 years (SD = 12.17), 73% were Caucasian, most were male (66.6%), 54% were diagnosed with HF <1 year, and 70% were NYHA IV. Patients that were ineligible or refused participation were similar in sociodemographic data to the enrolled sample, though the refusal sample was significantly younger (56.5 years vs 49.47 years; p = 0.011). The ADDA took 2-5 minutes to complete. 80% of dyads found the ADDA to be acceptable and would recommend the ADDA to others. Dyads also reported that the ADDA assisted decision making to complete an AD. Dyads expressed similar amounts of DC; however, caregivers were found to have significantly more DR compared to patients (p = 0.008). In qualitative analysis, both patients and caregivers reported decreased anxiety and gratitude about ACP discussions. Enrolled patients expressed a sense of relief in participating in ACP discussions, though continued to endorse a sense of “impending death” if they completed an AD. Only 8 of 30 patients completed an AD at the conclusion of the study. Conclusions This pilot study revealed that the ADDA was feasible in clinical practice and acceptable to patients and caregivers. Younger patients were more likely to refuse the ADDA and caregiver regret was higher among caregivers than patients after viewing the ADDA. Patients remain fearful that completing an AD means death is imminent. Future research needs to be directed at breaking down the barrier to completing an AD and increasing completion rates, engaging the younger aged HF population, and understanding and decreasing caregiver regret.