Palliative and end-of-life care in people with and without intellectual disabilities in primary care: identification, survival time, and healthcare utilization

Background: Evidence on end-of-life care (EOLC) provision for people with intellectual disabilities in primary care is limited. 

Methods: A retrospective cohort study of adults (18+ years) who died between 1 January 2010 and 31 March 2021 from linked Clinical Practice Research Datalink in England. Age- and gender-adjusted prevalence of comorbidities for people with and without IDs was compared by EOLC record assignment. Survival time and healthcare utilization after the first EOLC record was compared by ID status. Underlying cause of death was investigated. 

Results: Of 1.1 million adults identified, 2147 (21.8%) with IDs and 313 847 (28.4%) without IDs (unadjusted) had an EOLC record. Among the ID population, those with an EOLC record had disproportionately higher prevalence of dysphagia [+6.5 percentage points (95% CI: 4.9, 8.1)] and dementia [+5.2 percentage points (3.9,6.7)] than those without an EOLC record. Survival after the first EOLC record was shorter for people with IDs compared to those without IDs: 26% [absolute risk: 0.26 (0.24, 0.28)] vs 16% [absolute risk: 0.16 (0.16, 0.17)] died within 7 days. Primary care and hospital utilization rates were also lower [incidence rate ratio 0.96 (0.84, 0.97) and 0.42 (0.41, 0.44), respectively]. The most common cause of death in the ID population was cancer (38% of all deaths) followed by chromosomal conditions (11%). 

Conclusions: EOLC needs in primary care appear to be identified later for people with IDs. Their primary and hospital healthcare utilization patterns are also lower, despite having unique and complex health needs.