Changes in end of life preferences for care and place of death in people age 75+: A population level study using electronic health records

Problem

Death is now an event of later life, and primary care must adapt to meet the complex needs of patients who are dying later in life. The importance of patient preference in guiding end-of-life care is clear in UK National Guidelines. Current evidence suggests that a significant minority of patients change their preferences for place of care and place of death over time, but more longitudinal research is needed - particularly in older adults and those with non-malignant conditions. We aimed to investigate GP records for evidence of preference changes for place of care and place of death for people age > 75

Approach

We collected anonymised electronic health records for all 13,149 people age >75 who died in England between 01/01/2015 and 01/01/2016 with a record in GP practices contributing to the ResearchOne database. We investigated information on Read codes relating to preferences for care and place of death, and how these changed as people approached death.

Findings

A small proportion (13.0% n=1,713) of decedents had a code for preferred place of death, entered at a median of 6.6 months before death. The majority of people preferred to die in a care home (47.5%) or at home (43.9%). Of these 1,713 people, 358 (20.1%) were asked about their preference for place of death more than once before they died. In this subset, 68 (19.0%) people changed their preference, with the majority (n=25, 36.8%) changing their preference from home to care home. In the 290 (81%) people with a static preference, care home (n=172, 59.3%) and home (n=110, 37.9 %) death were the most preferred. A larger proportion (22.7%, n= 2,987) of decedents had recorded preference for place of care, entered at a median of 7.3 months before death. The most common preference was home (50.9%), followed by care home (41.5%). Of these 2,987 people, 588 (19.7%) were asked about their preference for place of care more than once before they died. In this subset, 115 (19.6%) people changed their preference, with the majority (n=38, 33.0%) changing their preference from home to care home. In the 473 (80.4%) people with a static preference, care home (n=231, 48.8%) and home (n=228, 48.2 %) care were the most preferred.

Consequences

In this older population, the majority of people preferred to be cared for and to die in a care home, or at home - likely reflecting their place of residence. However, coding of preferences occurred in a minority of people, and often occurred within the last months of life. This study suggests that further work is needed to improve recording of preferences. Further work is also needed to understand what factors influence when and why preferences change.