Abstract
Background/Aims Despite growing acceptance that patient engagement and shared decision-making should be goals of medicine, organizational attempts to support these ideals are limited and larger institutional structures often constrain patient autonomy. Home hospice care is a subset of medical care that has consciously developed a philosophical and practical approach to encouraging patient and family engagement. This research examines how home hospice care provides a different strategy for improving patient engagement and shared decision-making.
Methods This ethnographic study draws on a sample of 55 home hospice participants, including patients, family members/caregivers, staff, and volunteers, and uses in-depth interview and observation of home hospice work to examine the process of providing and receiving hospice care.
Results I find that macro level hospice institutional structures and micro level daily work practices embody a holistic approach which assumes patients and family members are the critical experts in most instances of decision-making. Differences in institutional structure, such as providing care in patient homes and having an interdisciplinary team approach focused on the “whole person”, empower the patient and family members. Likewise the micro level interactions between hospice workers and patients and family members narrow the field of purely “medical” decisions and broaden the field of decisions open to patients. Hospice workers accomplish this re-conceptualization by framing many medical decisions as being more about what is best for the patient and family and less about medical expertise.
Conclusions By broadening and re-conceptualizing the idea of decision-making, hospice workers enable patients and their families to have more control over their medical care and in many cases the process of dying itself. While some attributes of home hospice care are unique, many techniques could be introduced or accentuated in other models of medical care.
