‘Living Wills’ Leave Patients to Die

A young woman arrives by ambulance at A&E, having taken an overdose. It’s a routine event, with what — in the past — amounted to a clinical routine for management. A suicide note would probably be filed, the contents mostly examined only for mention of relatives’ contact details and what pills were taken. An experienced nurse would pump her stomach (they don’t do it now) and a junior doctor would assess the need for any further specific treatment. 

I’m not sure we thought hard about “patient consent” in this specific situation — there’s a certain illogicality in seeking informed consent to treat a self-harming patient. But now, with a renewed emphasis on patient autonomy, we have “Advance Directives” and, with these, the displacement of almost unthinking clinical routine by a potentially tragic combination of uncertainty and medical confusion. 

The Mental Capacity Act (2005) will not have been read word for word by more than a handful of doctors. But we are all now acutely aware that treating a non-consenting patient can be a criminal act and one of the clinical misdemeanours for which you could be struck off the Medical Register. Many doctors now believe, or vaguely assume, that patient autonomy always overrides clinical judgment.

So now such a patient can create medical uncertainty and panic. She has a note, clearly indicating she does not want active treatment for her suicide attempt. Relatives confirm it is her signature. She is not known to be psychiatrically ill and is certainly not drunk. Is this a valid advance directive? If not, doesn’t it constitute something similar? If such a letter appeared in court, what more proof could be needed that you had treated the patient not just without her consent, but against her expressed wishes? All this in a crowded A&E department at 1am. 

The supremely simple unwritten rule of thumb “when in doubt, treat”, which used to protect both patients and doctors, now no longer helps the latter. The worried, urgent and complex deliberations that replace it can lead to heartbreaking decisions. 

Last month saw the tragic case of 26-year-old Kerrie Wooltorton, who died in just such circumstances, receive much media attention, and other cases have undoubtedly occurred. There are some sound reasons behind the idea of advance directives. An individual with a serious cancer might reasonably wish to decline futile and burdensome treatments and there is wisdom in setting this out in advance. The Mental Capacity Act aimed, among other things, to provide a legal framework for such advance decisions (directives), and so could be said to be paved with perfectly good intentions. 

Many have argued though that the whole question of advance directives was always part of the pro-euthanasia lobby’s agenda, smuggled through parliament inside the Trojan horse of the terminally ill patient’s “right to refuse”. Either way, those who frame and draft our laws should concentrate not merely on what the law aims to establish, but on what might happen if it were to be misinterpreted or misused — or, in this case, just misunderstood by muddled doctors. Never mind what should happen — what could happen?

Depression is extremely common. Almost by definition it affects, and alters, our priorities and prejudices and therefore our judgment. Any decision, including an advance directive, made by a psychiatric patient suffering refractory depression is plainly not one made by an individual with the “necessary” mental capacity. A doctor could and should reasonably override such a patient’s suicidal intent, so as actively to treat his or her self-harm.

But what of the individual not yet explicitly known to suffer from such depression? Or the overdosing patient bearing an advance directive who is not necessarily clinically depressed, but has received some emotional blow, great or small, which equally distorts judgment? Or even a manipulative 18-year-old with an overdose and a piece of paper? 

Whether these possibilities are all, somewhere in the small print, carefully articulated and excluded in the sub-clauses defining what does and does not constitute a legally binding advance decision, is hardly material: a single tragic death proves the law as currently framed dangerously inadequate. There is an urgent need for an amendment to protect the vulnerable. Advance directives setting out a refusal of treatment for attempted suicide should be intrinsically invalid. (The alternative, surely, is that the deliberately non-treating physician becomes an accomplice to suicide — which is still, just, illegal.) 

But suicide is only one example of what could go wrong. A more prosaic question is simply that of a change of mind. You might believe with perfect confidence that you would refuse chemotherapy in the event of developing severe leukaemia — or any form of medicine if you were paralysed from the neck down — but anticipation is so unreliable. As with depression, so too with any other illnesses: they alter one’s perspective. Our zest for life is far greater than we might predict. But the law does not sensitively reflect this: the onus is doggedly on patient autonomy. Its explicit emphasis on individuals retaining the right to make “what might be seen as eccentric or unwise decisions” was surely not intended legally to enshrine decisions so unwise as to be fatally mistaken.

The fact is that most of us find it devastating, if not unimaginable, to contemplate, say, becoming blind, deaf or losing a limb. Equally though, most people who have such problems just get on with their lives. Sadly, some don’t. The point is that none of us can predict on which side of this “divide” we might fall. We may like to imagine we are heroes in the making, but we mostly believe we are not. Incidentally, it is surely this deeply unimaginative combination of fear and pessimism that is a driving force for much of the pro-euthanasia movement. But how can we possibly forecast what our attitude might be to some life-or-death decision in such dramatic circumstances? It is this all too human unpredictability that represents a deeper flaw in the whole concept of advance directives.

It is likely that, were any form of limiting amendment concerning advance directives to be introduced in parliament, advocates of euthanasia would not merely offer opposition but would attempt to further their own agenda in additional ways. 

Far better though that such efforts are debated formally by our elected representatives — and probably defeated, judging by past history — than the current worrying trend of legal “clarifications” emerging from a democratically unaccountable judiciary.

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