Caregiver Challenges Seen From the Perspective of Certified Home Hospice Medical Directors

Abstract

Background: Hospice medical directors (HMDs) play an important role as part of the interdisciplinary hospice team. Family caregivers (CGs) play a critical role in caring for patients receiving home hospice care. Understanding the challenges HMDs face when working with CGs is important when addressing potential gaps in care and providing quality end of life (EoL) care for the patient/CG dyad. Objectives: To understand issues HMDs encounter when working with and caring for CGs and to determine how they manage these issues in the home hospice setting. Design: Twelve semistructured phone interviews with certified HMDs were conducted. Data were analyzed using standard qualitative methods. Subjects: Participants included certified HMDs obtained from a public website. Results: Participants’ responses regarding the major issues HMDs faced when working with CGs were categorized into 6 themes: (1) assessing CG competency, (2) CG financial burden, (3) physical burden of caregiving, (4) managing CG expectations, (5) CGs denial of patient’s terminal condition, and (6) CGs unwilling or unable to engage with providers about their needs or the patient’s needs. Conclusions: HMDs confirmed the important role CGs play in providing care to home hospice patients. Challenges faced by HMDs vary from assessing CG competency in providing care to the patient, dealing with the physical and financial toll that CGs face, and addressing CGs’ expectations of hospice care. Future studies are needed to explore solutions to these issues to better support CGs in the home setting.