We were all very proud when Tessa Morgan, who joined us as a Summer student and fortunately for us stayed for a while, secured a very prestigious Woolf Fisher scholarship from the University of Cambridge. Her contribution to our work programme has been significant; supporting the development of a new research strand for us on gender within a palliative care context, and project managing our National Science Challenge Ageing Well project exploring social connectedness in older age. She also took on the unenviable task of organising both our team meetings and our annual conference. So it was great to have the opportunity to be invited to the University of Cambridge Institute of Public Health to meet up with her new team, whose research in palliative and end of life care I have long followed. The group is led by Stephen Barclay and includes Sarah Hoare, a like-minded social scientist whose just completed a really interesting PhD exploring hospital admissions within palliative care.
It was our shared interest in this issue which led to my invitation to present on research I’ve been conducting for nearly 20 years now (eek!) exploring the role of the hospital within palliative care. I chose a provocative title – Are hospital admissions for people with palliative care needs avoidable and unwanted? – and was pleased to attract a large, diverse, audience of clinicians and researchers of all disciplines. I argued that hospitals occupy an ambivalent position within palliative care. They are typically positioned within policy, service development, research, and society more broadly as ‘the problem to be avoided’. I strongly believe that this positioning shuts down possibilities to discuss how hospitals can be understood as a fundamental part of an integrated health and social care system. A system that is urgently to meet the rapid increased demand for palliative care predicted globally in the short to medium term.
I also challenged three ideas prevalent in international policy identified in a review led by Jackie Robinson as part of her excellent PhD research. The first of those is that hospitals play no role in palliative and end of life care management. This is easily refuted by figures demonstrating that the acute hospital is a significant site of death in most resource rich countries and, in the English context, particularly for older people. Furthermore, research led by David Clark has identified that, in Scotland, 30% of people resident in hospital will have died within a year. And work I have led in England and New Zealand confirms that 1/5th (NZ) to a 1/3rd (England) of inpatients meet standardised criteria for palliative care need.
Secondly, an idea that features strongly in both palliative care policy and service development is that hospital admissions for people with palliative care needs are both ‘inappropriate’ and unwanted. My first issue with this thinking relates to language; qualitative research we undertook confirmed many difficulties with this terminology. Questions that we explored included: inappropriate for whom? Who gets to decide? Clinicians? Which ones? (Opinions are likely to vary by specialty and whether you are community or hospital-based). Patients and families? It was for this reason that, when embarking on a programme of research exploring hospital admissions among people with palliative care needs, we decided to focus on ‘potentially avoidable hospitalisations’. The other departure we made from current thinking was to shift the debate from what happens ‘in an ideal world’, where studies had concluded that 30–40% of deaths in hospital could have occurred elsewhere if enhanced community services were available, to the ‘real world’. Crucially, at the point of admission, given available local circumstances and the socio-demographic and clinical profile of the patient, we asked the question: “could this admission have been avoided?” The answer was very different. Indeed, within two large acute hospitals in England, we concluded that only 6.7% of admissions –7.2% of hospital were ‘potentially avoidable’. And cost savings were nowhere near as significant as previous estimates suggested (although there was evidence of potentially significant cost savings through reducing length of stay).
I also identified a significant limitation, both with our studies, and the majority of research which preceded and succeeded it, namely that a health service perspective was adopted. The significant costs incurred by family carers, a topic we explored in a subsequent study, were not considered. This is a significant oversight and must be addressed in all future economic analyses within palliative care. Similarly, avoidability of hospital admissions was only judged in relation to community service provision. But again, as our previous work has demonstrated, admissions are also driven by patient and family wishes. Indeed, throughout our lives we are taught that we should phone an ambulance in the event of a serious health crisis. So our research participants have reflected that, in a situation where you feel more ill than you have ever felt in your life, the idea that you may not do this seems nonsensical.
Finally, ‘home’ is central to both historical, and contemporary, understandings of the ‘good death’. This drives an understanding in policy and wider society that dying at home is overwhelmingly both preferred and important, and that people with palliative care needs receive no benefit from hospital admissions. To challenge the first part of this rhetoric I began by presenting the relative ranking of place of death within a ‘hierarchy’ of priorities at the end of life for Māori and non-Māori dying in advanced age. This again is work under review, but I don’t think it gives too much away to say that ‘death at home’ wasn’t at the top of the list – or even in the top half of the list. Moreover, Sarah Hoare’s excellent systematic review, conducted with colleagues including Stephen Barclay, challenged the opening sentence of many a palliative care paper, namely that ‘most people want to die at home’. Her review concluded that the evidence just wasn’t there to support this conclusion. I then moved on to present findings from two qualitative studies, one with older people recruited from community groups and the other with older people with advanced heart failure, which found that there are many reasons why older people don’t see dying at home as a feasible option for them. These include concerns about dying alone, not wanting children to undertake intimate personal cares, worries about ‘being a burden’, and a perception that higher quality medical care will be delivered in hospitals. The quality of your housing also counts. I recounted undertaking research with people living in poor quality damp, cold housing. They found the assumption that they may want to die in that setting baffling. As one said: “my house is not a nice place to live, why would I want to die there?”. Finally, we found evidence that having medical equipment, and health and social care professionals, within the ‘home’ environment can fundamentally change the way in which that space is understood. As one woman caring for her dying husband ‘at home’ said: “he may as well have been in hospital”.
If you’ve read Jackie’s excellent blog about her PhD work, you will be aware that her research fundamentally challenges, and ultimately refutes, the idea that people with palliative care needs experience no benefit from hospital admission. Benefits reported included ‘feeling safe’, receiving treatment that made them ‘feel better’, being provided with information and/or support to manage at home, and providing relief for family and whanau. Also, crucially, her participants (who knew they had a life limiting illness) identified that not going to hospital carried significant risks: “I might die”. The second phase of her research is currently in press and under review so I’ll let her update you in due course. However, again I don’t think it’s giving too much away to state that findings were confirmatory, as well as extended our understanding of which groups benefit most from hospital admission. Crucially, in both phases of her work, despite considerable burden related to hospitalisation also being reported, participants would want to return to hospital again in the future. Indeed, the majority reported this would be preferred, even if the care and treatment they received could have been provided within a community setting.
These ideas were well received and, crucially, opened up debate and discussion among the audience. They had resonance with the current challenges many people are experiencing in hospital settings. Parallels were drawn by geriatricians working with the frail elderly, many of whom have palliative care needs, and whose hospital admissions are also contentious. I discussed these similarities in a recent editorial. Indeed, given that most people with palliative care needs are older people, the spectre of ageism in this debate about the ‘proper’ use of potentially scarce hospital resource looms large.
Following a lovely dinner in Cambridge, it was time to return to London, secure in the knowledge that Tessa is in safe hands. Next stop Canada for the International Public Health and Palliative Care Conference. Then home to Auckland. Where it will hopefully have stopped raining.