What Matters Most? A Mixed Methods Study of Critical Aspects of a Home-Based Palliative Program

Abstract

Background: Home-based palliative care programs have shown value in improving quality of care and lowering costs for seriously ill patients. It is unknown what specific elements of these programs matter most to patients and caregivers. Aim: To identify what services are critical and why they matter to patients in a home-based palliative program. Setting/Participants: A mixed methods study of 18 participants in the At Home Support (AHS) program in Southeast Michigan. Measurements: Two semistructured interviews were conducted for each participant, one while enrolled in AHS and another 3 months after the program ended to elicit the impact of AHS on their care. Qualitative theme data were merged with quantitative data on demographics, social and financial resources, symptoms, medical conditions, functional status, and utilization of health care while in AHS. Results: Four major themes of critical services reported by distinct populations of participants were described—medical support, endorsed by nearly every participant; emotional and spiritual support, endorsed by those with serious illness and symptom burden; practical assistance, endorsed by those with functional disability and isolation; and social services, endorsed by those in poverty. Medical monitoring was also described as critical but only by healthier participants. Conclusion: This study presents a conceptual model of the critical services in home-based palliative care and why these services are important to high-risk patients. This model may be used to guide further research and evaluation work on the benefits of home-based palliative care.