By Dr Arjun Kingdon, Academic Clinical Fellow & ST5 in Palliative Medicine
Article reference: Kingdon A, Spathis A, Brodrick R, et al, What is the impact of clinically assisted hydration in the last days of life? A systematic literature review and narrative synthesis, BMJ Supportive & Palliative Care, 2021;11:68-74.
It’s hard to forget the furore surrounding the withdrawal of the Liverpool Care Pathway eight years ago. The specialty of palliative care has seldom felt more visible or more vulnerable, before or since. From Baroness Neuberger’s “More Care Less Pathway” review, through “One Chance To Get It Right”, to the publication of NICE guidance on the care of dying adults in the last days of life, much of modern palliative care practice, thinking and policy has been influenced by the learning from that difficult time.
Looking back to “More Care Less Pathway”, it is striking that many of the broader findings as well as the individual stories of upset, pain and poor practice, centred around lack of provision of hydration, or lack of communication about hydration. Recommendations were made that “specialist services, professional associations and the Royal Colleges should run and evaluate programmes of education, training and audit about how to discuss and decide with patients and relatives or carers how to manage hydration at the end of life”. These recommendations haven’t been widely actioned on a national scale to date.
Fast forward, and we see results from the National Audit of Care at the End of Life (NACEL) in 2018 and 2019 indicating that such conversations are held and documented with no more than 1 in 10 dying people and less than a third of their families. And that is in cases where dying is recognised in advance at all in hospital. By contrast, other NACEL parameters are much closer to where they “ought” to be. The NICE guidance (NG31) is clear: “discuss the risks and benefits of clinically assisted hydration with the dying person and those important to them”.
We don’t have evidence about whether these conversations are simply not being held, or just not being documented, and we don’t know why practice appears to be so at odds with guidance. And beyond the stories from “More Care Less Pathway”, many of which make tough reading, we don’t have much evidence about the perspectives of patients and their relatives. We know that this is an important topic and that when communication is poor or absent, the cost of this can be considerable upset, complaints, and difficult bereavements. But it’s not clear why things are the way they are, or how best to fix it.
BMJ Supportive and Palliative Care has just published a systematic review of the literature concerning the impact of clinically assisted hydration in the last days of life. In short, despite broad inclusion criteria, the review found that there’s still not enough evidence to guide clinicians in their decision-making. Intriguing results from a recent feasibility cluster randomised controlled trial suggest there may be an impact of close to 24h of prolonged life, but for the most part we are reliant on our individual clinical judgments and little else. Evidence suggests practice varies considerably between individuals, countries, and different healthcare settings.
Since we currently don’t know whether assisted hydration in the final days of life affects symptoms or length of life, it becomes even more important to get the communication right, including open acknowledgement of the uncertainties. And to take action on the Neuberger report’s recommendations as a matter of priority.