I have been involved for some years now in the work of the Hospice Friendly Hospitals programme in Ireland – http://hospicefoundation.ie/what-we-do/hospice-friendly-hospitals/ . This fascinating project is a multi-centre intervention to develop end of life care capacity in hospitals, advocate for patients and families and create systems level change in the delivery of hospital for those approaching death. The programme has three goals:
- To develop comprehensive standards for all hospitals in relation to dying, death and bereavement
- To develop the capacity of acute and community hospitals to introduce and sustain these standards
- To change the overall culture in hospitals and care settings in relation to dying, death and bereavement
It was in the context of this work that I became involved in discussions about whether it is possible to establish what proportion of people in hospital at any one time are in the last year of life. Knowing this figure, it seemed, would assist in advocacy for patients and families, raise further awareness in clinicians and perhaps stimulate more effort to make appropriate care plans for people who might benefit.
Such a study however presents certain challenges. It requires some of the ‘big data’ skills that can link disparate sets of records together to produce a result. In this case, the issue was to connect hospital admission data with data from national death registrations.
Working with a team of Dumfries and Galloway clinicians and public health people and fully supported by a colleague in the Information and Statistics Division at NHS Scotland, we have now been able to complete this study. It is currently available for open access online and will appear in print in June. Here are the full details:
Clark, D Armstrong, M Allan, A, Graham, F Carnon, A Isles, C. Imminence of death among hospital inpatients: a prevalent cohort study. Palliative Medicine, March 2014, online first – http://pmj.sagepub.com/content/early/2014/03/17/0269216314526443.full
Most efforts to identify the proportion of people in hospital who are in the last year of life have been based on local studies done in one or two settings, using small samples. We wanted to look not at a sample of hospital patients, but at an entire population of those hospitalised in one country on a given date. We therefore set out to establish the likelihood of death within 12 months of a cohort of all hospital inpatients in Scotland on a fixed ‘census’ date. This type of approach is known as a prevalent cohort study.
What we found
Our census identified10,743 inpatients in 25 Scottish teaching and general hospitals on 31 March 2010 (we excluded cottage and community hospitals and long stay facilities). We found that 3,098 (28.8%) patients died during the one year follow up period: 2.9% by 7 days, 8.9% by 30 days, 16.0% by 3 months, 21.2% by 6 months, 25.5% by 9 months and 28.8% by 12 months.
The likelihood of dying rose steeply with age and was three times higher at one year for patients aged 85 and over, compared to those who were under 60.
A striking finding was that almost one in ten patients (9.3%) of patients died during the admission on which we recorded them – and this accounted for 32.3% of all the deaths within the 12 month follow-up period. A simple way of looking at this is that nearly one in 10 patients in an ‘acute hospital’ in Scotland on any given day will die there during their admission.
Our study has quantified for the first time the large number of hospital patients at any one time who are within the last year of life. It clearly has implications for health care priority setting. Our findings support the various initiatives currently underway to raise the profile of end of life care in hospitals, where it is known there are still difficulties in making the transition to palliative care and in implementing interventions for the imminently dying. We show that so-called ‘acute’ hospital services are in fact dealing with a very large number of people who are nearing the end of their lives.
We argue from our findings that the culture and organization of hospitals should become become more attuned to the high proportion of inpatients in imminent need of end of life care. There are plenty of opportunities here for DGRI to take a strategic look at how to address this – and also to think about it in relation to the reorganisation of acute services in the region.
The media reaction to our paper, which appeared online on Westminster budget day, was extraordinary. Perhaps this was because ultimately, the study has a simple message: almost 29% of those in hospital at any one time can be expected to die within 12 months; and 9% will die on that admission.
I had sensed for a long time that this paper was important. First, such a study had never been done before and whilst clinicians, if asked, might have a good working sense of the numbers in question, no one had yet produced solid evidence on propensity to die among hospital patients. Second, the paper seemed to me to give support to all those advocating for better engagement with end of life care in hospital settings – such as Hospice Friendly Hospitals in Ireland, those working on the aftermath of the Liverpool Care Pathway, as well as the many patients and families who have expressed concern about these issues in recent times.
In general the mass media had a good sense of the purpose of the paper. Several broadcasters highlighted that it is not a comment on the quality of care, but rather an opportunity for hospitals to think more actively about how they engage with that significant portion of their patients who at any one time are in the last year of life. The Herald in particular gave a detailed summary as well as comments from Age Scotland and Scottish Government. Radio Four’s Sarah Montague was eager to know whether the results would be replicated elsewhere. BBC Scotland’s Eleanor Bradford presented a well- reasoned piece that also highlighted approaches to early identification of patients with palliative care needs, on admission to hospital – a theme that was picked up a few days later in a ‘magazine style’ piece on the BBC Reporting Scotland radio programme.
In the social media there was huge interest from professionals working in palliative care and in hospitals in general. The sense of excitement and support from colleagues was genuinely rewarding. Some were quick to ask questions – could individual hospital data be released, how did length of stay compare between those who died and those who did not, were there any special features our census date that might have influenced the outcome, does Scottish end of life provision differ from other parts of the UK? Others talked more about what we now do to identify and respond. Some emphasised the role of primary care and district nursing services in avoiding admission to hospital. One group even organised a Twitter journal club to discuss the paper – leading to the idea of conducting the study in three or four other countries. No doubt the debate will continue.
I present this as a piece of important research, conducted by colleagues from NHS Dumfries and Galloway and the University of Glasgow, Dumfries Campus. I hope the paper will be widely read locally – and that actions will follow to further improve the care of local patients in the last year of life. We shall show in a forthcoming paper that a large proportion of these go on to die in the Dumfries and Galloway Royal Infirmary.
David Clark is Head of the School of Interdisciplinary Studies, University of Glasgow Dumfries Campus and a Wellcome Trust Senior Investigator.
Follow him on his blog : http://endoflifestudies.academicblogs.co.uk/and on Twitter: @dumfriesshire