How assessment of need could ensure good end of life care

Press release published

The Economist Intelligence Unit ranked the UK first in the world in its 2015 Quality of Death Index because of its ‘comprehensive national policies, the extensive integration of palliative care into the National Health Service, a strong hospice movement and deep community engagement on the issue. 

What this report didn’t do is measure how well the UK is doing in responding to need for specialist end of life care.  Estimating the need for palliative care is difficult given the range of diseases that can lead to death and the different trajectories they follow. However, the Cicely Saunders Institute, based in Kings College London did just that in 2014.  They developed a population-based estimate of palliative care need, based on the number of people dying from particular illnesses; those illnesses that could reasonably assumed to benefit from specialist palliative care. 

This estimate used English data only and was based on data between 2006 and 2008. Earlier this year we updated this estimate, applying their methodology to data from across the UK and using more recent data from 2012 to 2014.  We did this on a Wales basis as well as for the other nations. 

In doing this we also sought to establish if or how need has changed between 2006-8 and three year period from 2012 to 2014.  In Wales, the data is broken down to local health board areas, which also have age profile data to allow them to forecast need to an extent. 

In addition to increases in absolute numbers of deaths, we found that palliative care need has increased proportionately from 63% of all deaths to at least 74% of all deaths (a minimal estimate), across the UK in the last six years, and is likely to continue to grow. This reflects changes in age distribution in the population and increases in long-term conditions needing palliative care. 

The majority of people living with a terminal illness will require some form of palliative care. Any comprehensive end of life care strategy or approach to caring for people with a terminal illness should therefore take into account the size of the population that will need palliative care. This is essential to inform effective provision of services. 

In this three year period, people with a need for palliative care in Wales ranged from 70k to 91k.

Our analysis shows that the growing number of deaths recorded with Alzheimer’s disease, dementia and senility as the underlying cause has a significant role to play in understanding the rising need for palliative care.   We also found notable increases in the number of deaths attributed to heart disease, and renal disease, both of which are diseases where the individual is very likely to benefit from specialist palliative care.

Over the coming years, official projections show the number of deaths will rise.  In Wales 6% more people will die every year in 25 years’ time compared to 2014.  The changing distribution of age means that more people will be living with and dying from complex chronic illnesses, often more than one with the significant increase in the number of people living with and dying from dementia likely to continue into the future. 

This population approach to assessing need is as good a method as we can ever hope to find.  It should become an essential tool in planning services for the future.  Diseases are fickle things, however it would not be difficult to identify the range of care someone with a particular disease is likely to need and then plan accordingly. 

How is Marie Curie working towards this? In West Wales, our Marie Curie Nursing Service includes support from dementia nurses to address local need, while our Hospice at Home service in Cardiff and the Vale ensures people are able to stay at home if that is their preferred place of death. 

Wasting time and energy looking for a new way of assessing need will not achieve any greater accuracy than we already have using the method developed by the Cicely Saunders Institute.  All health organisations now need to work to ensure this need is met at the end of life. 

Simon Jones, Director of Policy and Public Affairs, Marie Curie