Identification of palliative care needs among people with dementia and its association with acute hospital care and community service use at the end-of-life: A retrospective cohort study using linked primary, community and secondary care data

Abstract

Background: Hospital admissions among people dying with dementia are common. It is not known whether identification of palliative care needs could help prevent unnecessary admissions. Aim: To examine the proportion of people with dementia identified as having palliative care needs in their last year of life, and the association between identification of needs and primary, community and hospital services in the last 90 days. Design: Retrospective cohort study using Discover, an administrative and clinical dataset from 365 primary care practices in London with deterministic individual-level data linkage to community and hospital records. Setting/participants: People diagnosed with dementia and registered with a general practitioner in North West London (UK) who died between 2016 and 2019. The primary outcome was multiple non-elective hospital admissions in the last 90 days of life. Secondary outcomes included contacts with primary and community care providers. We examined the association between identification of palliative care needs with outcomes. Results: Among 5804 decedents with dementia, 1953 (33.6%) were identified as having palliative care needs, including 1141 (19.7%) identified before the last 90 days of life. Identification of palliative care needs before the last 90 days was associated with a lower risk of multiple hospital admissions (Relative Risk 0.70, 95% CI 0.58–0.85) and more contacts with the primary care practice, community nurses and palliative care teams in the last 90 days. Conclusions: Further investigation of the mechanisms underlying the association between identification of palliative care needs and reduced hospital admissions could help reduce reliance on acute care for this population.

Identification of palliative care needs at the end of life for dementia patients can decrease acute hospital care needs and admissions

“…Leniz et al 1 found that for those diagnosed with dementia, one and three had palliative care needs and one and five had needs that happened before the last 90 days. It was also identified that for those who had palliative care needs before the last days of life, they were likely to engage with the healthcare system through primary care community or community palliative care domains and to have less multiple non-elective admissions to the hospital in the last days of life.…”

“…Leniz et al 1 support the current initiatives to improve identification of an access to palliative care. This study reinforces the need to bolster the workforce of palliative care healthcare professionals and work on healthcare and systems-wide approaches to identifying palliative care needs.The needs of dementia patients at the end of life showcases one example of how identification of palliative care needs provides for better patient outcomes and decreases the incidence of acute care utilisation, ultimately improving patient experience at end of life.…”

“…Many individuals with dementia and that being hospitalised at the end of life and in order to provide the best care possible and to best adhere to patient wishes for end-of-life care preventing unnecessary admissions is imperative for the healthcare community. A recent article by Leniz et al 1 addresses the palliative care needs among this population. A commentary of this article ensues for the purposes of disseminating the findings.…”

“…Many patients wish to remain at home to live out their final days, however, most patients in developed countries see their final days in the hospital 2 3. Leniz et al 1 concluded that identification of these palliative care needs in the period preceding death leads to decreased hospitalisation enabling patients to enact their end of life wishes. The findings of the study suggest early identification of palliative care needs is beneficial and this finding is in line with other research stating referrals in the 3–12 months before death are ideal 2…”

The promise of big data for palliative and end-of-life care research

“…Routinely collected data can also be used to shed light on patients with other conditions than cancer. Both the study of Leniz et al 8 and the study of Miranda et al 9 looked at older people diagnosed with dementia, a rapidly expanding group of patients. Leniz et al found in their retrospective cohort study that only a fraction of them were formally identified as having palliative care needs, even less so prior to the very end of life.…”