Alex RK“Whereof one cannot speak, thereof one must be silent.” Whilst the philosopher Ludwig Wittgenstein was thinking of rather different matters to clinical dilemmas, it is sometimes difficult to escape the impression that his rather cryptic statement is one that has resonance in such situations. I am thinking, in part, of situations where one or other person involved simply feels they cannot speak: for instance, a clinician who feels that they cannot start a difficult conversation with a patient about CPR, or a person who is afraid to challenge a consensus developing around a best interests decision because they do not feel they have the standing within a hierarchy. These are hugely problematic situations, the causes of which require unpicking and addressing, but at one level identifying the right thing to do is not all that difficult; it is a question of supporting/nudging/more the individuals concerned to do it.
More broadly and more deeply, I am also thinking of situations where (often for – ironically – unspoken reasons) it is felt to be too difficult to issue guidance about dilemmas. I was, for instance, troubled to find when joining a Royal College of Physicians working group to develop updated guidance about supporting people who have eating and drinking difficulties that there appeared to be no guidance from any professional body about how to proceed where the professionals involved felt that the person’s choice was too risky. The updated guidance does address the situation, seeking to set out a framework to calibrate the rights at play without appearing to give licence to excess risk aversion (see pages 25-6 of here). But the process of developing that part of the guidance reinforced my initial sense that the previous silence of the guidance (not just from the RCP, but more broadly) may well have reflected in significant part the fact that to speak of the dilemma required addressing uncomfortable questions about the limits of autonomy. Speaking of such matters is not easy, not least because there may not be complete consensus societally about those limits. But not speaking of them, and not providing any framework within which to have a transparent discussion is, I would suggest, a recipe for immense difficulty on the ground.
In similar vein, we might also think of the consistent refusal to issue national guidance about triage decisions during the first waves of the pandemic. It is difficult to escape the impression that this was in large part down to the fact that acknowledging that there may be points where it would not be possible to treat everyone requiring hospital admission for COVID-19 would be inconsistent with the national myth that the NHS is always be able to cope. The COVID-19 inquiry well help us understand the consequences for patients, but from working with clinicians during those waves, it is clear that the failure to issue such guidance placed them in exceptionally invidious positions (some of which are addressed in this paper from August 2020). A huge irony of this is that, as a deliberative democracy exercise I was involved in between the first and second waves made clear, ‘ordinary’ members of the public were entirely capable of understanding why triage might be necessary, and able to engage in sophisticated discussions about the relevant factors, and particular concerns to take into account.
Why am I talking about this now? In part, it is because it is a phenomenon about which I am increasingly troubled. In part, though, it is because of the publication by Compassion in Dying on 2 November 2022 of a call for guidance about voluntarily stopping eating and drinking (VSED). This is an almost paradigmatically Wittgensteinian (if that’s a word) situation: an area which gives rise to hugely strong feelings, is legally challenging (even if the challenge sometimes is less the letter of the law and more about application of the law), and engages very deep ethical issues. But all of these are factors which should lead to open discussions to seek both to generate consensus about the right approach, and to provide clear guidance for both individuals who might choose to stop eating and drinking, and for those responding to such decisions. I therefore both welcome the publication of the report, and very much hope that it does spark a move towards the creation of such guidance.
