Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

Abstract

Background: Heart failure (HF) and palliative care (PC) organizations recommend early PC to improve the quality of life of patients living with HF. Objective: We conducted a two-phase formative evaluation study to translate a cancer-focused concurrent PC intervention into one that would be appropriate for rural-dwelling adults with New York Heart Association Class III-IV HF and their primary caregivers. Methods: Phase I: We tailored the intervention for an HF population via literature review, expert consultation, and clinician (N = 15) small group interviews. Phase II: We enrolled 11 patient/caregiver dyads to assess intervention feasibility and satisfaction. We assessed participants' experiences and satisfaction after session/ week three and session/week six via digitally recorded interviews. Clinician and participant interviews were transcribed and content analyzed. Outcome measures were evaluated for completion rates and effect sizes. Results: Phase I: Clinicians described barriers to initiating PC in HF, triggers for initiating PC, and suggestions for intervention improvement. Phase II: Participants were able to complete the majority of study sessions, measures, and interviews. Satisfaction interviews revealed the content to be relevant and comprehensive in addressing HF patient and caregiver primary concerns; however, participants unanimously suggested making the intervention available earlier in the illness trajectory. Efficacy measures demonstrated small to medium effect sizes. Conclusions:We tailored and demonstrated feasibility of providing an early, concurrent palliative care intervention to patients with advanced HF and their caregivers. Based on this experience we are now conducting an efficacy trial in a racially diverse sample.

The Benefits of Palliative Care Interventions for Patients with Heart Failure - A Literature Review

“…A positive that came from all the clinicians in this phase was involving the same palliative care team from the beginning rather than transitioning the patient to a whole new team when hospice care is needed. They felt continuity was a key for the patients and families [5].…”

“…They expressed they were familiar with many of the coping skills introduced in their sessions during phase II. Introduction of a nurse coach in this phase to the patients helped them change their outlook on life as the disease progressed [5].…”

“…The study results from phase I and phase II were determined to be effective in the Palliative Care treatment of the heart failure populations. The research team submitted for funding from the National Palliative Research Center to test with a larger sample of participants [5].…”

Interdisciplinary palliative care teams : insights and experiences of chaplain interns and social work interns.

“…National and international organizations consider the interdisciplinary team as providing high quality palliative care (IOM, 2014; National Association of Social Workers Standards for Palliative & End-of-life Care, 2004;NCP, 2013;WHO, 2003). Empirical evidence supports interdisciplinary teams to improve patient outcomes (Gade et al, 2008); however, other types of palliative care, (e.g., medical and nurse clinicians only) have also demonstrated benefit to patients receiving palliative care (Bakitas et al, 2009;Dionne-Odom et al, 2014).…”

Burden of caring

“…Caregivers to patients with heart failure receiving hospice care recommended providing palliative caregiving interventions earlier in the disease trajectory, rather than at the end (35). However, the optimal timing or if the is a risk to deliver an intervention too early was not revealed.…”