• Terminal care
• Supportive care
• Clinical decisions
• Communication

We read with interest the systematic review by Gent et al,1 recently published in this journal, exploring the attitudes and knowledge around clinically assisted hydration in the last days to hours of life. Set against the backdrop of the recently released National Institute for Health and Care Excellence (NICE) Guideline for Care of the Dying Adult, this work is an effective and timely illustration of the clinical and cultural complexity of providing care to, and making decisions with, patients and their families at the end of life.

In view of this complexity, it is perhaps unsurprising that the aforementioned new NICE Guideline (seen as the replacement to the Liverpool Care Pathway following the Neuberger Report) has itself been subject to fierce criticism. Writing in the Daily Telegraph, Professor Patrick Pullicino2 was one clinician to voice strong concern, describing the section on hydration ‘a disaster of misinformation, distortion and ambiguity’. He also attacked the concept of ‘anticipatory prescribing’ and the recommendations around the recognition of patients in the last days of life. In the aftermath of the Neuberger report, we must respond to these concerns. However, the need for improved supportive and palliative care for those at the end of life is clear3 and this need must also be addressed.

Professor Pullicino2 argues that we need a greater evidence base around recognition of the dying patient before instituting a new ‘pathway’ and likens the new NICE Guideline on the subject to ‘a cookbook list’. However, the Neuberger Report accepts that ‘there are no precise ways of telling accurately when a patient is in the last days of life’4 and, in the meantime, surely guidance intended to inform amidst uncertainty should be valued rather than decried? When introducing any guideline, a core challenge is identifying those individuals to which it should be applied. In palliative care, where our approach is shaped by the patient rather than their disease, this challenge is arguably even greater. While research aimed at ‘diagnosing dying’ is of value, our overall priorities of care will always be directed by our patients and will always remain founded on carefully considered clinical judgement—in essence, interpreting the guidelines to deliver the ‘individualised plan of care’ that the Leadership Alliance for the Care of Dying People demands of us.3 We must accept that the pursuit of definitive criteria to identify the dying is likely to be a long and futile exercise and one that could potentially lead to unnecessary patient suffering if it precludes, in the interim, the introduction of accessible guidance that empowers staff to care effectively and compassionately.

Professor Pullicino articulates what is also a widely held public fear: that people may be wrongly identified as dying and be denied life-saving treatment. We must try our utmost to avoid this. However, there is also a danger of failing to identify people who are dying and we must acknowledge this too. In his catechistic article entitled ‘The Seven Sins of Medicine’, Richard Asher insightfully commented that ‘cruelty is the most important and prevalent sin’ that physicians commit.5 Now, over 60 years since Asher, even when we suspect a patient to be in the last days of life, we still remain prone to over-investigation and futile intervention, often preferring this to the prioritisation of comfort. We routinely resort to potentially cruel procedures and treatments when difficult but realistic conversations with patients and relatives, conversations which convey our judgement but acknowledge the uncertainties to which Professor Pullicino alludes, would perhaps have led both the patient and the clinician to agree on different goals of care. By prevaricating and by communicating poorly, we forget that, to borrow the words of Professor Pullicino, this too can be a ‘disaster of misinformation, distortion and ambiguity’. The recognition and care of the dying patient is not easy and never will be. However, for it to improve, we need to embrace guidance and we need to encourage and build on work such as Gent's.