Palliative care strategy - population data and research: overview

4. Future population palliative care needs

4.1 Published research

Scottish research had estimated future palliative care need in Scotland up to 2040.^[6] The study used National Records of Scotland deaths data up to 2017 and Office for National Statistics mortality projections based on the 2016 Scottish population. They adapted an established estimation method based on a set of International Classification of Disease-10th revision (ICD-10) diagnostic codes for causes of death associated with needing palliative care.

The study reported projections that by 2040, the number of people who may need palliative care will increase by at least 14% and could be 20% if multimorbidity is included. The researchers projected increased complexity of population palliative care need with the number of people dying with multiple diseases from different disease groups rising from 27% of all deaths in 2017 to 43% by 2040.

4.2 Updated and extended analyses

Methodology

Scottish Government analysts used more recent data to extend this research on projections of future population palliative care need. Public Health Scotland provided data on deaths by age, gender, and cause from 2011 to 2021. These data came from the National Records of Scotland individual level deaths database held by Public Health Scotland. Mortality projections for Scotland are available from the Office for National Statistics. The most recent projections are based on the period up to mid-2020.

Palliative care need was based on a relevant ICD-10 code being recorded as the main underlying cause of death or any contributory cause. This method yields a more robust estimate of deaths with a palliative care need than only analysing by a single, main underlying cause of death. (see Appendix A for ICD-10 codes)

To project future population palliative care need, the number and proportion of age and gender-specific deaths with a relevant ICD-10 code from 2011 to 2021 were analysed. The mean annual change in the proportion of deaths requiring palliative care between 2011 and 2021 was calculated. It was assumed that the mean annual change would continue in a linear fashion and the resulting proportion was applied to the Office for National Statistics mortality forecasts up to 2040. This methodology does not account for changes in medical treatments or technological advances which may alter mortality patterns by cause of death.

To understand changes in the complexity of palliative care need, deaths with multiple contributory causes (multimorbidity) were analysed. Multimorbidity was defined as people dying from two or more diseases associated with palliative care need from more than one of eight disease groups – cancer, heart disease and heart failure, chronic lower respiratory disease and respiratory failure, reno-vascular disease and renal failure, liver disease, dementia, stroke, and other diseases (includes neurological conditions). The mean annual change in the proportion of deaths with multimorbidity between 2011 and 2021 was assumed to continue in a linear fashion. The resulting mean annual change in the proportion of multimorbidity deaths was applied to Office for National Statistics mortality forecasts up to 2040.

Results of projection analyses

An estimated 56,416 people died with a palliative care need in Scotland in 2021. This accounted for 89% of all deaths in 2021. By 2040, the number of people dying with palliative care needs is projected to rise to an estimated 63,353 which is 90% of forecasted deaths and a 12% increase from 2021. The greatest increase is expected in people aged 85 or over who are projected to account for 42% of those dying with palliative care needs. (26,913 of a total of 63,353 such deaths).

Figure 1 shows deaths with a palliative care need by disease group up until 2040. The disease grouping is based on the main underlying and contributory cause of death so an individual can appear within more than one disease grouping.

*Data for 2011 and 2021 is actual deaths and data for 2030 and 2040 is projected deaths. Analyses as of February 2023.

• In 2021, heart disease accounted for the highest total number of palliative care deaths and is projected to rise from 26,957 to 34,443 by 2040 (a 28% increase).
• Dementia as a cause of death is projected to rise sharply from 12,658 in 2021 to 22,423 by 2040 (a 77% increase).
• Other types of organ failure illnesses accounted for a smaller proportion of deaths in 2021 but by 2040 these numbers are projected to increase, particularly for reno-vascular disease (136%) and lung diseases (33%).
• Cancer was a major cause of death in 2021 (16,438 deaths), but numbers of deaths are projected to remain fairly constant (1% decrease by 2040).
• Deaths with an underlying or contributory cause of stroke are projected to decrease between 2021 and 2040 by 14%.

The numbers of people in Scotland living and dying with two or more health conditions (multimorbidity) is increasing.^[7] In 2021, 23,900 people died with multimorbidity (38% of all deaths). The number of people dying with multimorbidity is projected to increase by 60% to 38,147 by 2040, accounting for 54% of all deaths. If current trends continue, it is projected that by 2040, 64% of people aged 85 and over could be expected to die with multiple health conditions and will be living with these in the years before they die.

*Data for 2011 and 2021 is actual deaths and data for 2030 and 2040 is projected deaths. Analysis as of February 2023.