• end of life care
• ethics

This personal view draws attention to the lack of regard, given by the BMA in its new guidance, to the symptomatic benefit of clinically assisted nutrition and hydration (CANH) in patients who are not imminently dying. This article aims to identify how ignoring symptomatic benefit is a serious oversight and cause for concern given that this document, endorsed by the General Medical Council (GMC) and courts, is created with the purpose of providing a framework for best interests decision-making.

The new BMA guidance on CANH, which is endorsed by the GMC,1 follows up on the Supreme Court case of An NHS Trust v Y,2 that any removal of CANH from a patient in prolonged disorder of consciousness (PDOC) no longer requires the approval of the court unless there is disagreement or the decision is finely balanced. The decision in Re Y was itself, in no small part, based on the weight given to professional guidance: the Supreme Court appeared comforted that the need for an independent second medical opinion before any withdrawal of CANH was an ‘effective check’ for the protection of patients. Charles Foster comments, the deference shown by Lady Hale to professional guidance makes such guidance a ‘definitive statement of the relevant obligations’.3

The BMA guidance is not just a summary of the law on stopping CANH. The document has expanded the definition of PDOC to include neurodegenerative conditions, dementia and strokes. The definitive statement of the relevant obligation, as Foster puts it, is that it is not in a patient’s best interests to commence or continue CANH ‘when it is not able to provide a quality of life they would find acceptable’. In making this best interests decision, one is directed to consider diagnosis, prognosis, likelihood of recovery and what represents a meaningful recovery to the patient. This all assessed in the absence of any clear evidence of the patient’s own views and in someone who is not imminently dying who is sustained by CANH alone.

The BMA guidance does implicitly acknowledge that for its framework to apply, CANH in non-imminently dying patients will in most cases have symptomatic benefit. But notably, the authors make no explicit comment of this fact, only viewing CANH as life prolonging. Yet even the case of Bland,4 where it was identified that withdrawal of life-sustaining CANH is, in some circumstances, lawful was premised on the finding that CANH gave Tony Bland no benefit at all—not even symptomatic. Thus, Bland did not undermine the general and uncontroversial principle that if an intervention gives a benefit to a patient—even if that benefit is ‘only’ symptomatic, it will be in the patient’s best interests to have it bar any expressed wish to the contrary or evidence of harm. The dual purpose of CANH in prolonging life as well as supporting/enhancing quality of life is also recognised in the European ESPEN guidelines on CANH.5

The BMA guidance seems to give the false and dangerous impression that the only form of quality of life to deliberate is an abstract one and not quality of life related to the current physical benefit of CANH. There is a high risk that unwitting doctors using this guidance may ignore the immediate benefit of CANH and precipitate symptoms of starvation in the ‘best interests’ of the patient even in the absence of any substantive evidence the patient would have refused CANH or any evidence the CANH is causing distress. One should be mindful that health professionals not responding to the symptoms of hunger and thirst was one of the problems with the Liverpool Care Pathway.6 All individuals, even those lacking capacity and with no prospect of recovery, have an absolute right not to be subject to inhuman or degrading treatment—stopping or not using CANH for the relief of symptoms of starvation may well engage this human right. A second opinion that is itself based on this guidance is not the answer to this concern.