Bereaved Next-of-Kin Narratives about Hospice Care in Assisted Living

TL;DR

This study explores how hospice care affects end-of-life experiences in assisted living, based on stories from family members of deceased residents.

Contribution

The study provides novel insights into hospice care quality in assisted living through bereaved next-of-kin narratives and AL policies.

Findings

Bereaved families emphasized the need for more staff attention and avoiding late-life transitions.

Hospice enrollment was linked to better staff access and support, even in communities with retention policies.

Residents with hospice care were more likely to stay in place despite AL policies and RN availability.

Abstract

There is limited evidence about the quality of end-of-life care provided in assisted living (AL), especially as related to various community-level care processes supporting dying in place. This study aimed to explore narratives of bereaved next-of-kin of deceased AL residents, focusing on end-of-life care quality and hospice utilization as a factor of AL retention policies for dying residents and staffing. We conducted 52 semi-structured telephone interviews with bereaved next-of-kin of persons who resided in AL during the last month of life across 38 states, purposefully oversampling racially and ethnically diverse ALs. We stratified qualitative data along care processes obtained through a nationally-representative survey of administrators at AL communities with 25 or more beds. Two coders applied exploratory thematic analysis to analyze narratives stratified by AL policy to retain residents in need of end-of-life care (vs. case-by-case vs. discharge) and any registered nurse (RN) on staff (yes/no). Next-of-kin cited the desire for more staff attention and avoiding late-life transitions as key motivating factors for enrollment in hospice. Even in AL communities with a policy to retain dying residents, participants reported receiving an ultimatum to either enroll their next-of-kin in hospice or move them to another setting like a nursing home. Regardless of RN availability, electing hospice enhanced staff access, particularly overnight presence and support for residents at risk of falling. Our study highlights the importance of hospice care in allowing dying residents to stay in place across AL communities with varying policies regarding end-of-life care and RN availability.