Places of end-of-life care and death in health policies of four countries (EOLinPLACE Project)

Abstract

Background

Place of death and its concordance with patient preference is a key indicator for end-of-life care, studied cross-nationally and flagged as a priority by the OECD. However, it is unclear if and how ‘place’ is considered in health policy in relation to end-of-life care. This study aims to examine if and how health policies in different nations consider places of end-of-life care and death.

Methods

We conducted a comparative qualitative study across the US, the Netherlands, Portugal, and Uganda, of health policy documents following the READ (i.e., Ready materials, Extract data, Analyze data, Distill findings) systematic approach for document analysis in health policy research. Documents were analyzed using directed content analysis following Hsieh and Shannon (2005). Timelines for document publication were country-specific, based on local health policy developments relevant to end-of-life care in the last two decades. Backdates ranged from 2001 in Uganda to 2015 in the Netherlands; the most recent publication year was 2024 for all countries.

Findings

We identified 89 policy documents relevant to end-of-life care mentioning preferred or actual places of end-of-life care or death. The first topic was ‘Narratives around places’, where home was prioritized while inpatient facilities were most problematized. A second topic ‘Policy measures acting on places’ included: i) Availability of services across places, where the rural-urban divide, workforce shortages, waitlists and financial considerations challenged availability of end-of-life care across places; and ii) Professional expertise vs. community empowerment, which highlighted a key tension in the extent to which countries invest in professional expertise versus community empowerment.

Conclusions

While improving care at home is prioritized with evidence-based reasons to support it, our study shows that policymakers overlook the potential benefits of other care settings and flexible care solutions that promote continuity of care. This comparative analysis unveiled implications to improve end-of-life care across care settings.