Marie A. Bakitas, DNSc, APRN, FAAN
Reducing Barriers to Palliative Care for Heart Failure Patients and Their Families
Funded by the National Palliative Care Research Center (NPCRC) the objective of this study is to determine the efficacy of ENABLE: CHF-PC (Comprehensive Heartcare For Patients and Caregivers), an intervention tailored to rural, older adults with advanced heart failure (HF) in reducing HF morbidity and improving patient and caregiver quality of life and quality of care. This proposal will provide preliminary data for a large randomized controlled trial comparing ENABLE: CHF-PC to usual HF care.
Of the 6 million Americans with heart failure (HF), those over age 65 experience the highest morbidity and mortality. Although national heart and palliative care organizations support early palliative care for advanced HF there has been little progress in increasing HF patients’ access to these services. Only 19% of Medicare- aged HF patients (and their family caregivers) participate in hospice, compared with more than half of advanced cancer patients. Referral barriers to early palliative care in HF include uncertainty about the patient's prognosis a delayed referral until all HF therapies have been exhausted, and beliefs that palliative care is synonymous with hospice and should be reserved for patients who are actively dying.
The original ENABLE (Educate, Nurture, Advise, Before Life Ends) intervention was able to overcome barriers to early palliative care referral and achieve improved QOL, depression, and in some cases, survival outcomes in advanced cancer patients through a patient and family-centered, phone-based intervention. Using findings from the ENABLE intervention and a the recently completed Dartmouth Heart Failure Pilot study this current exploratory project builds on findings in which we partnered with cardiologists, primary care clinicians and 10 HF patient / family caregiver dyads to translate our successful concurrent oncology palliative care intervention to meet the needs of HF patients and caregivers.
Bakitas, M., Macmartin, M., Trzepkowski, K., Robert, A., Jackson, L., Brown, J. R., . . . Kono, A. (2013). Palliative care consultations for heart failure patients: how many, when, and why? J Card Fail, 19(3), 193-201. doi: 10.1016/j.cardfail.2013.01.011
Williams, AL and Bakitas, M. (2012) Cancer Family Caregivers: A New Direction for Interventions. J Palliat Med. 15(7): 775-783.
Bakitas M, Lyons K, Hegel M, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: The Project ENABLE II Randomized Controlled Trial. JAMA.2009;302(7):741-749.