Catholic Medical Quarterly Volume 69(3) August 2019
Practical Medical Ethics
The British Medical Association and Royal College of Physicians’ Guidance on Clinically Assisted Nutrition and Hydration
This is an edited letter Edited letter to a Specialist Palliative Care doctor on new BMA/RCP guidance on Clinically-assisted nutrition and hydration (CANH) and adults who lack the capacity to consent
It was good to speak to you on Friday. Since then, I've read the BMA/RCP guidance on CANH properly and have done a bit of consulting with doctors and others who find the document very concerning (and who also pointed out the lack of consultation among health care professionals and the general public).
It's worth stressing that the BMA's own authority is limited: they are not of course the GMC, but more a doctors' trade union. Even the RCP (which is currently polling its members on assisted suicide) is not the GMC!
In short, the guidance is not GMC guidance, and although the GMC generally endorse it on the cover-page, they helpfully make a point of saying that this not about threshold fitness to practice and that the guidance is a tool not a rule-book. It's also worth remembering observations in the document itself eg on p.23 to the effect that the guidance doesn’t replace existing (including GMC) guidance (I also hear that new GMC consent guidance is in the pipeline).
Even if the guidance were a GMC document, and even if the BMA/RCP's interpretation of the law is accepted completely (though clearly the very detailed guidance goes beyond the law) that doesn't mean it would be ethical or even feasible for busy doctors - to do everything the guidance says.
The guidance massively sidelines patients' objective health interests in favour of hugely disproportionate stress on the patient's past views (and present experiences if any). It's already a serious problem that doctors are expected to withdraw basic care like CANH because it was rejected in the past by the patient (who often will not have been remotely adequately informed). Far worse if CANH is withdrawn because life itself wasn't wanted or 'would not have been' wanted in someone else's opinion - which seems overwhelmingly the kind of case considered by the guidance.
One of the most worrying things is the way decision-makers are expected to be unusually proactive (even if nothing for the patient has changed) in constantly reviewing ‘best interests’ understood in very subjective terms, questioning family members on their loved one’s wishes and beliefs re life in certain conditions (p.32 etc), finding others who might testify to these wishes and beliefs etc. Beginning such a process unfortunately may well turn up some kind of evidence that the person would not have wanted to live in their current state - in fact, that's more likely than turning up evidence that the person would have wanted to live (particularly with conditions like PVS).
To me there are serious complicity problems raised by getting involved in prior discussions with family etc along the guidance lines - as opposed to 'doing one's own thing', acting like a doctor, tactfully making a case for CANH being in the patient's clinical interests (the guidance itself accepts that CANH is clinically indicated for these patients), tactfully pointing out things the patient/family may not have known about CANH etc - perhaps as part of some freestanding consultation.
The guidance asks doctors either to make or implement the decision to stop CANH, including on 'patient didn't want to live' grounds, or refer the patient to a colleague for the purpose of making / considering / implementing such a decision. Any referral made specifically so that a colleague can make or implement a decision to withdraw CANH if the patient didn't want to live is no solution morally: no patient should be referred specifically for something you think it's wrong to do. (Of course, simply mentioning the possibility of a second opinion or informing the family / some higher-up that you're unable to do something does not constitute referral - you're not saying someone else should do it or actually intending people look elsewhere.)
As I mentioned on the phone, it's important not to give relatives the impression that something morally reasonable is happening when it's not. For me, hospice people getting involved in initial discussions with relatives along the guidance lines has worrying echoes of the situation where abortion staff make a point of acting as if women having late abortions for disability were losing / going to lose their babies naturally. It's about sending out wrong / harmful messages, as well as perhaps being closely implicated in the withdrawal decision itself. Even if the patient's relatives do not actually support withdrawal of CANH (though they may rashly let slip that the patient wanted that) it's not good for them to get the message that morally nothing is amiss, not least as this may affect future decisions - or merely expressions of opinion - they may make about their own lives. In any case, care needs to be taken that the consultation does not turn into a garnering and hazardous recording on the patient notes of 'patient didn't want to live' material.
Hospices are for people with existing health conditions requiring palliative care, not for people whose death is being planned for, perhaps deliberately on the grounds is what they wanted (some doctors as well as perhaps some families and patients in the past will be actually intending death as well as cessation of a form of basic care). I’m not convinced that hospices should be agreeing in advance to accept patients who could live for years but thought in the past or ‘would have thought’ in the opinion of someone else that they would be better off dead than tube-fed in their current condition. At any rate, I don’t think hospices should get involved in planning for/managing the whole process of wrongful CANH withdrawal (as opposed perhaps to accepting a patient some point after any wrongful CANH withdrawal, without that acceptance being promised specifically in advance). It is one thing to say that a palliative care service is generically open to patients who need it; something else to assure decision-makers in advance of a wrongful CANH withdrawal decision for a specific patient that one has an end-of-life care plan ready for that patient. It's a serious problem that the court and the guidance ask for such a care plan (the guidance including a space for it on the proforma) given that specialist palliative care working in hospice, community and hospital are the only people who have the skills to provide this, whether directly or via consultation.
Do let me know any thoughts you have yourself - or let me know if you would prefer to discuss this by phone.
Best wishes, Helen
Dr Helen Watt is Senior Research Fellow at Anscombe Bioethics Centre