When Is End of Life for Patients with Heart Failure? Challenges in Identifying End of Life Create Unique Barriers to Quality Care (S746)

Abstract

•Identify unique barriers encountered by providers in providing high quality end-of-life care for patients with advanced heart failure.•Describe competing motivations to ensure that disease-directed therapies are exhausted and desire to avoid overly aggressive care that create challenges in end-of-life care for advanced heart failure patients. Quality measures for end-of-life (EOL) care for cancer patients have been helpful in standardizing and improving care; however, there are no accepted quality measures for advanced heart failure (AHF) patients. To explore primary care physicians’ and cardiologists’ perceptions of essential elements of, and barriers to, high-quality EOL care for AHF patients, as an initial step to defining acceptable quality metrics. We conducted a qualitative study with a convenience sample of 24 primary care and cardiology physicians who care for AHF patients. Individual, in-depth, semi-structured interviews explored physicians’ perceptions of key elements of high-quality EOL care for AHF patients and the barriers encountered. Interviews were audio recorded and professionally transcribed, and software-assisted, line-by-line coding and analysis was performed to identify emergent themes. Several identified elements of high-quality EOL care for AHF were similar to those described for other diseases, such as dying at home, receipt of adequate in home support, and symptom control. Multiple barriers to high-quality EOL care for AHF were also similar, including hospice eligibility criteria restrictions and limits in availability of home care services. However, physicians identified a unique challenge they encountered: increased difficulty in identifying the EOL period for patients with AHF. Participants perceived this difficulty as arising from three factors: 1) inherently greater prognostic uncertainty in AHF, 2) inadequate societal recognition of AHF as a terminal disease, and 3) dependence of symptom control on disease-modifying therapies for patients with AHF. Conflicting desires to provide and avoid aggressive, cure-focused care was another barrier revealed in participants’ comments. Many of the elements of, and barriers to, high-quality EOL care are similar to other diseases; the difficulty of identifying the EOL phase is a unique challenge arising from several factors. More research is needed to better understand and address these factors.