Authors: Dr Karen Chumbley, Medical Director, St Helena Hospice and Dr Tim Wilson, 3V
Much progress has been made since the End of Life strategy was published by the NHS in 2008. But more needs to be done; depending on where you live will alter the chance that you will die in the place you wish. For people dying with some conditions, more work is needed. And sadly, inequity appears to persist, even at this most moment in our life.
We might hope that when we are dying, the health and care services, and the voluntary sector would work together to achieves the outcomes we wish. Multiple surveys have confirmed, for instance, that most people would choose to die at home. Based on the Atlas of Variation published by Public Health England in November 2018, it appears that more people are dying at home than previously. Something to celebrate. But as with all Atlases the variation shows that whilst you are more likely to die at home than previously, some places are more successful than others. Indeed, the overall variation in the proportion of people dying in hospital from all causes is an unexplained 1.9 fold. Some areas appear to be more successful than others. Dying from cancer certainly has the greatest number of people dying outside hospital. But the figures still do not match the number of people who do not wish to die in hospital as suggested by surveys. And there is considerable variation. And if you die from conditions other than cancer, the proportion of people dying in hospital is greater.
The Atlas outlines that the predictability of disease trajectories is less in conditions such as COPD or CVD. But it is our suspicion that adopting approaches such as the Best Supportive Care approach, which includes having an honest conversation with people identified as being in their last phases of life, would start to change this. Hopefully it would also start to reduce the problem of emergency admissions in the last 90 days of life, where there is a 4.3 fold variation. The Atlas provides some suspicion that there may be inequity in the quality of end of life care. Some of the variation between CCGs might suggest this. Where inequity might be most prevalent is in death from dementia. More people die in care homes than hospital for dementia. But overall the variation in deaths in a care home is 5.3 between CCGs. Given the complexity of care home funding, dying from dementia may be one of our most shameful areas of inequity. Perhaps what is most stark is that we are not measuring the quality of how people are dying, nor the degree to which we are addressing the outcomes that matter to them and their loved ones. And when someone dies in hospital they generally use a greater amount of resources than if someone dies, say, supported at home.
The complex issues that Atlases of Variation expose are not generally amenable to targets, the usual NHS response. Instead learning and continual improvement is required. For instance, across the Sustainability and Transformation Partnership (STP) footprint of NE Essex and West Suffolk, there are differences that are also opportunities. In North East Essex the risk of admission to hospital at the end of life is less than in Suffolk, but once in hospital the mapping shows that Suffolk is more successful at enabling people to leave hospital and receive care in their usual place of residence. So as Suffolk and North East Essex come together, the aim should be to learn from what each community does well and build upon it and create change. So, the variation that the Atlas of End of Life Care reveals, suggest that we have long way to go to improve outcomes for people at the end of life, that there is likely to be inequity, and it is likely by not improving outcomes and equity, we are wasting resources.
Relevance for value improvement
End of life is an area where moving resources from lower value to higher value interventions not only improves personal value, it also improves population value. Whilst progress is being made, much more needs to be done, including addressing inequity.