Palliative care strategy - population data and research: overview

6. Palliative care population needs research

There is growing evidence of the limitations of using estimated life expectancy based on clinical assessment to identify individuals who may need palliative care. When patient records were created in an electronic palliative care coordination system in London, staff estimated the person's life expectancy. For nearly 100,000 people with a palliative care record between 2010 and 2020, the agreement between estimated and actual life expectancy (clinician prognosis) was highest for patients with dementia or frailty (0.75) and cancer (0.73). Across all disease groups, the accuracy of survival estimates was higher for patients who were likely to live for fewer than 14 days (74% accuracy) or for more than one year (83% accuracy), but much lower for predicting survival of "weeks" or "months" (32% accuracy).^[12]

Research using The Irish Longitudinal Study on Ageing (TILDA) dataset made projections about the number of older people aged 50 and over who may be living and dying with serious illnesses up to 2046.^[13] They estimated that older people living with serious illnesses will outnumber those who are in the last year of their life by approximately 12:1 meaning palliative care population need is relevant across much longer periods of illness lasting years not just in the 12 months of life.

NHS Highland Accounting for Value Report provides detailed information about local population palliative care need.^[14] Place of death was impacted strongly by where people lived, especially the degree of remoteness. People dying with dementia were more likely to die in a care home and much less likely to die in hospital; those dying of cancer were less likely to die in hospital and more likely to die at home; and those dying of organ failure were more likely to die in hospital. In the last month of life, there was a sharp increase in emergency admissions, but a fall in the length of stay per admission.

National primary care datasets from over 5,500,000 GP-registered patients in Scotland were screened in 2022 and in 2023 using an electronic records search tool.^[15] In both years, around 0.6% of GP registered patients who did not have a palliative care code were found. Of these, around a third had a Key Information Summary and less than a fifth had a documented future care plan. Case study GP practices were able to use the screening tool to guide review and assessment of their patients who might have palliative care needs and to prioritise people for care planning.