Katherine Sleeman is a clinician and academic at the Cicely Saunders Institute, King’s College London. Here, she explains the background to a longer research article selected as ‘Editor’s choice’ in the January issue of Palliative Medicine.
“The hospice movement is too good to be true and too small to be useful.” So said Colin Douglas, an Edinburgh GP (general practitioner), writing in the BMJ in 1992.(https://twitter.com/kesleeman/status/423897111957372928 )He went on: “Why should only the minority who die of malignancies – and precious few even of them – be singled out for deluxe dying? And why should a large and general need be left to the scanty and scandalously choosy efforts of a patchwork of local charities with one hand in the coffers of the NHS [National Health Service] and the other in the church bazaar economy? Answers please, on postcards.”
Provocative, certainly, but he had a point. The English hospice movement, with its garden party fundraisers and leafy suburban locations, had long been criticized as a preserve of the middle classes. But that was 1992. Our 21st Century mantra is that we admit people based on their needs, not based on their diagnosis. Gone are the days, surely, when wealth and hospice care are linked?
With this question in mind, we decided to investigate how the characteristics of people dying in hospices in England have changed over the past 20 years. We used national mortality data, derived from death certificates, to identify every death that occurred in an inpatient hospice unit in England over a 20- year period (1993 to 2012). We looked at trends over time in the characteristics of these deaths and used statistical modelling to understand how the ‘risk’ of having certain characteristics (for example, having cancer or living in a deprived area) has changed.
In all, 446,615 people died in inpatient hospices over the time period, with an increase from 17,440 in 1993 to 26,032 in 2012. As a proportion of all deaths in England, hospice deaths accounted for 3.4% of all deaths in 1993 and rose to 6.0% of all deaths in 2012.
Perhaps not surprisingly we found that the majority of people who died in hospice had cancer as their underlying cause of death – 94.8% of overall though the likelihood of non-cancer conditions has increased slightly over time.
What was surprising – to us – is that whereas people dying in 1992 had been slightly more likely to die in hospice if they lived in a richer area rather than a deprived area, the gap between rich and poor actually increased over time. In 2012, 5.3% of people living in the most deprived areas died in hospices, compared to 7.1% of people living in the least deprived areas.
Why are people from lower socio-economic areas increasingly less likely than their richer neighbours to die in hospices? There is some evidence that preference for inpatient hospice death is higher among those with a professional or management background. It may be that people from lower social classes feel inhibited about requesting hospice care. Neither of these options seems particularly satisfactory.
The majority of English hospice funding comes from private and charitable sources: how much does this contribute to the growing disparities? Do we have an unconscious (or conscious) bias towards admitting the sort of people who might be more likely to leave our services a generous bequest when they die? And if we do, is this bias a bad thing if these bequests lead to improved care for others? These might be uncomfortable questions for us to consider, but it is important that we do.
Despite decades of political rhetoric concerning equality of access to end of life care, our evidence suggests significant disparities still exist and are increasing. How can we best reduce these inequalities? Should we try? Are we trying?
Answers please, on postcards.
Download a free copy of the full article
This blog post relates to the longer article, ‘The changing demographics of inpatient hospice death: Population-based cross-sectional study in England 1993-2012’ by Katherine E Sleeman, Joanna M Davies, Julia Verne, Wei Gao and Irene J Higginson published in Palliative Medicine January 2016 vol. 30: 45-53, first published on 19 May 2015 doi:10.1177/0269216315585064.
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