Identifying and predicting the need for end-of-life care: an agile review of the literature

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Introduction

Palliative and end-of-life care in Wales includes care and support for people with progressive, life‑shortening conditions and for those who may be in their last year of life. The National Clinical Lead for the Palliative and End of Life Care Programme asked the Evidence Service to identify indicators that could help describe who in the population may need this type of care and what their care needs may look like.

This work supported early thinking on developing a population needs assessment for end-of-life care in Wales. We aimed to understand which demographic and healthcare characteristics, such as age, ethnicity, and patterns of healthcare use, have been used in earlier research to predict who may need end-of-life care. These indicators could inform future modelling to compare who should be receiving care with who actually received it. This agile review summarises the characteristics used in previous studies to identify people who may have been in their last 12 months of life and highlights key questions that emerged across the evidence.

Main points

How up to date is this evidence?

We carried out this review in July 2022 and applied no date limits. We identified studies that were published between 1997 and 2022.

What we found

• We identified seven population‑level models developed to estimate need for palliative and end‑of‑life care, mostly using data from Australia, Colombia, Germany, Ireland, and England. One study compared estimates across 12 countries.
• All models estimated general need for palliative and end‑of‑life care, and most used mortality data and disease‑specific mortality to produce projections. Models differed mainly in the age groups included and which diseases were counted as potentially benefiting from end‑of‑life care.
• Most models used International Statistical Classification of Diseases and related health problems (ICD-10) codes to define disease groups. Earlier models were based on the Rosenwax et al. (2005) list, and later models expanded these categories to include more people who may need care. Cancer, dementia, and heart failure were the most common disease groups included.
• Population level models provided limited detail on individual characteristics that might help identify people who need end‑of‑life care. Some models had been validated, but we did not assess the strength of these processes.
• Primary studies reported characteristics associated with needing palliative or end‑of‑life care, including age, co morbidity/multimorbidity, country of birth, disease group or disability burden, education level, ethnicity, gender or sex, geographical region, health and social care use (e.g., GP visits, emergency department visits, hospital admissions, home help hours), language preference, pain burden, place of residence, and socioeconomic status or social disadvantage.

What this means

• The characteristics identified in this summary came from observational studies that used different datasets, disease groups, and age categories. Because of this variation, we could not compare the results directly and they are unlikely to reflect the Welsh population.
• Even with these limitations, the characteristics provide a useful starting point for identifying groups who may need end‑of‑life care and can support early thinking for a population needs assessment in Wales. The evidence also highlights where gaps remain, including characteristics that have not been explored at a population level.
• Many studies used only the underlying cause of death, which can underestimate need. Using additional data sources, such as primary care or hospital records, may give a fuller picture of end‑of‑life care needs.
• Existing population models estimated overall need but did not describe the level or timing of care required. Models that include illness trajectories may capture more complex needs, especially for people with long‑term conditions.
• We did not assess the quality of the included studies, so we cannot comment on their robustness. If these findings are used to inform policy, a full quality assessment and careful consideration of how well the evidence applies to Wales would be important.

Technical information

We carried out an agile scoping review using streamlined yet rigorous review methods to find and summarise evidence. We first identified models used to estimate population‑level need for palliative or end‑of‑life care, then examined primary studies that used these models to describe characteristics of people who may need this type of care, and finally identified additional studies describing people who received or were likely to need palliative or end‑of‑life care.

Glossary

End-of-life care: Care for people who are likely to be in the last year of life, focused on comfort, symptom management and support for families.

Palliative care: Support that aims to improve quality of life for people with life‑limiting conditions by addressing physical, psychological, social and spiritual needs.

International Statistical Classification of Diseases and related health problems (ICD-10) codes: Is produced and maintained by World Health Organisation. It is the mandated, standardised system used to translate clinical diagnoses and health problems from text into alphanumeric codes.

Population Needs Assessment: A structured process to understand the size, characteristics and support needs of a population to inform planning and service design.

Indicators: Measurable characteristics, such as age, disease burden or healthcare use, used to identify groups who may need palliative or end‑of‑life care.

Observational study: Retrospective or prospective study in which the investigator observes the natural course of events with or without control groups (for example, cohort studies and case–control studies).

Scoping review: A type of evidence review that maps what research exists on a particular topic or research area, rather than testing how well something works. It helps map the available evidence on a topic, clarify concepts as well as identify gaps in research.

Stakeholders

National Clinical Lead for Palliative and End of Life care Programme