Katherine Sleeman: The best place in the world to die? Let’s make it better

The UK is officially the best place in the world to die. So said a report published by the Economist Intelligence Unit in October, which revealed that based on the 2015 Quality of Death Index, a measure of the quality of palliative care in 80 countries around the world, the UK comes top.

This is good news. But you don’t have to scratch far beneath the surface to find a different story. A few months earlier, in July, the One Chance to Get it Right: One Year On report revealed that 44 of 105 acute hospitals in England inspected by the CQC had end of life care services that either “required improvement” or were “inadequate.” In May, the Ombudsman’s report Dying Without Dignity featured 12 patient stories illustrating the terrible reality of poor end of life care for some patients. And in March, the Health Select Committee published a report which described a huge variation in the quality and practice of end of life care across acute and community settings. Whether or not the UK is the “best” place in the world to die, this bleak library of failure suggests the best is not good enough.

How can we improve the quality of care of the dying? There is an art to palliative care, but this does not preclude the need for scientific evidence with which to guide practice and policy. The Health Select Committee report rightly identified investment in research as necessary to improve the quality of care of the dying, and made strong recommendations that the government ensure that future policy on palliative and end of life care is informed by a robust evidence base. This is a welcome recommendation as there can be a perception, even among clinicians, that research is somehow less important or even unnecessary when people are dying. And national investment figures would appear to support this: in 2010, just 0.1% of total UK research spend was allocated to palliative and end of life care research. That’s 10p in every £100 for something that will affect every one of us.

In this light, it is encouraging that the newly formed National Institute for Health Research (NIHR) Dissemination Centre has chosen to focus on palliative and end of life care as the subject of its first report, published today. The broad remit of the NIHR Dissemination Centre is to help ensure that research findings are accessible to, and used by, policy makers and practitioners. Academic journal articles have long been criticized for being aimed at editors and peer reviewers, rather than the people who might use the research to improve care. Targeted dissemination of research findings, clearly summarized, is one way of maximizing the value of research for patients and society.

The new report is not an exhaustive list of international research activities, but a compilation of the main research projects in palliative and end of life care funded by the NIHR over the past five years. The breadth of research detailed within the report ranges from analysis of routinely collected data, to mixed-methods studies, and randomized controlled trials, and demonstrates the varied program of research being carried out in the UK. Some of the research studies describe the problems faced by dying patients, for example drawing attention to inequalities and gaps in provision of care based on diagnosis, age, or location. Other studies provide important insights into how we might close these gaps.

The Economist Intelligence Unit report has shown us that the UK has the potential and infrastructure to provide excellent care to every dying person. The bleak library of failure shows that for dying individuals the reality can be far from good. Today’s report will help ensure that research findings are used by policy makers and practitioners to improve care for dying people. By choosing to focus on palliative and end of life care for the subject of its first report, the NIHR Dissemination Centre is sending a clear and welcome message that evidence is not less important or relevant when people are dying.

Katherine Sleeman is a clinician and academic at King’s College London’s Cicely Saunders Institute. She is on twitter @kesleeman.

Competing interest: Katherine has previously held an NIHR funded Clinical Lectureship in Palliative Medicine. Katherine contributed to the writing of the NIHR Dissemination Centre report on palliative and end of life care, and some of Katherine’s research is highlighted in the report.