What the Death and dying report tells us about end of life care in Wales

by Natasha Wynne Policy and Public Affairs Assistant, Wales


Infographic from the Death and dying in Wales report
See the full infographic  

How much of their last year of life does a person with a terminal illness spend in hospital? How might someone’s diagnosis affect their journey through hospital end of life care services? These are the sorts of questions Marie Curie’s policy team in Wales have been trying to answer in our new report, Death and dying in Wales (PDF 292KB). Produced in partnership with the Bevan Foundation, our report analyses data from the NHS Wales Informatics Service (NWIS) about bed days and admissions in the final year of life and hospital-based specialist palliative care for everyone who died in Wales in 2012. It helps to paint a picture of how the end of life journey might be for people with different conditions and of different ages. Download the report (PDF 292 KB)


Over a month of hospital bed days


The data shows that, on average, someone who died in 2012 spent 33.9 days – more than a month – of their last year of life in a hospital bed. Some of these days will have been planned, or ‘elective’, but over two-thirds of them will have resulted from an emergency admission. For people whose underlying cause of death is attributed to dementia, the total number of days spent in a hospital bed rises to over 50. Overall, people in their final year of life used over a million bed days in 2012. This is almost a quarter of all NHS bed days. Often, hospital is not the most appropriate place for someone with a terminal condition and the majority of people say it is the place they’d least like to die. Therefore, a key issue when planning end of life care must be how to reduce the number of emergency bed days and ensure that people can spend more of their precious time in their own homes or care home with appropriate levels of care and support.


A lack of access to specialist palliative care


Palliative care includes management of pain and symptoms and psychological, social and spiritual support. This holistic approach to care is typically very appropriate for people with a terminal illness and it is estimated that 75% of people who die will have palliative care needs. Specialist palliative care, which is delivered by trained clinical specialists, is appropriate for people with more complex needs. The NWIS data allows us to see whether those who died in 2012 had been given a palliative care diagnosis or had received hospital-based specialist palliative care. It shows that this was the case for less than half of those who died from cancer, and for only a third of those who died from cancer and were over the age of 85. For people who died from other conditions, this figure may be as low as 5%. This strongly suggests that many people, especially those with non-cancer diagnoses, are not accessing the care they need. This data can’t give us the full picture. Indeed, it could be that some people’s palliative care needs are met by ‘generalist’ providers, such as their GP or a geriatrician. The problem is that with the data available in Wales we just can’t know if people are receiving the palliative care that they need. This makes it difficult to see where the system is working well and where it needs to be improved.


Recommendations


This is why Marie Curie is recommending that a robust national data set for individual level palliative care data is established for Wales, which would complement improved end of life care experience data to give a much fuller picture of end of life care. In the meantime however, it is vital to continue focusing efforts on improving end of life care and access to palliative care for everyone, especially for those who we know are more likely to miss out on this essential care. Marie Curie produced this report in partnership with the Bevan Foundation, an independent Welsh think tank. Read an excellent blog on the topic from Dr Victoria Winckler, Director of the Bevan Foundation and co-author of the report.