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“Informed choice” in a time of too much medicine—no panacea for ethical difficulties

BMJ 2016; 353 doi: https://doi.org/10.1136/bmj.i2230 (Published 09 May 2016) Cite this as: BMJ 2016;353:i2230

Rapid Response:

Michael H Stone: A defence of my preference for law and not ethics

I think I should cover some of the ethical issues which so exercise many contributors, because I have insistently claimed that ‘we must stick to the law – because it has a clarity lacking within ethics’. I will explain why I am so insistent that ‘we must use law where possible, and try to avoid using ethics’ - I believe explaining that is important, because my stance might be misinterpreted as ‘cold and uncaring’. In fact, my stance on law versus ethics, flows from my observation that ‘medical academic debate’ almost never addresses the issues which bother me, from my ‘live-with relative during end-of-life perspective’. But first I’ll contrast an ‘ethical’ dilemma, with its ‘legal’ analysis.

A patient consults his GP about a chest pain. This pain could have many causes, some of which could only be investigated by diagnostic tests which carry various risks, and also involve the risks of unnecessary action based on ‘false positives’. It isn’t clear whether the patient, even if the GP attempts to explain all of the risks, will properly understand things such as false positive test results: nor is it obvious that the patient will make a decision that would lead to ‘the best clinical outcome’. Ethically – if ‘seeking to achieve the best outcome’ is the objective – this is very complicated, to the point of being impossible to resolve. And ethically, the GP is thinking about the consequences of both his own actions, and his inactions.

Legally, if Informed Consent is the law of the land, the situation is different. To start with, it cannot be assumed that the patient is requesting treatment for his chest pain: prior to the patient’s consent, the patient is merely asking for clinical information relevant to his chest pain, and for treatment options – the ‘information’ part of informed consent. At any point, the patient can say ‘you need not tell me any more – I’ve decided to not ask for this chest pain to be treated, at the moment’. Ideally the patient will listen to a description of the risks of that decision – but the GP cannot force the patient to listen to a description of the risks of ‘walking away’, and neither can the GP be held responsible for the patient’s [possibly very ‘unwise’] decision to walk away. For so long as the consultation continues, the GP must provide [‘theoretically in law’ – the practicalities of this seem a little unclear, as indeed does the legal interpretation] all of the clinical information which might affect the way the patient decides. Then the patient alone provides the ‘consent’ part of informed consent, and the patient ‘deciding unwisely’ is not the GP’s fault.

The reason I am so keen on people sticking to the informed consent described in our English law, is not that I am ‘against happy endings’, nor am I sanguine about young adults, ‘exercising their legal right to kill themselves’. I am so insistent about the application of informed consent, because I became involved not in a general ‘ethical debate’, but in a debate about end-of-life behaviour. And the ethics which many professionals seem to apply during end-of-life, offend me. I am offended that most guidance seems to imply that if a terminal patient has clearly expressed a refusal of a future treatment to a member of his family, ‘somehow this counts less than if he had expressed it to a GP’. I am offended that even if I write a very clearly worded Advance Decision refusing cardiopulmonary resuscitation irrespective of why I arrest, if I arrest at home and the death could not be certified, attending 999 paramedics would be likely to ignore my instruction and would probably attempt CPR. I am offended that for known end-of-life but not yet ‘expected’ home deaths, the police tend to become involved, and to treat the family as if they are suspects – but I feel sure that deaths which happen in identical clinical situations, but in hospital, do not result in the police attending and interrogating the nursing staff. These things all offend me, and they also ‘offend my ethics’. My ethics include things such as ‘no accusation without some evidence’: people should be assumed honest until proven otherwise; decent end-of-life support for patients requires that clinicians and family carers should be working together; etc. So my ethics, appear to be different from the ‘ethics’ of 999 paramedics, police officers, etc.

If my [hypothetical] 82 years old, but seemingly ‘healthy’, father had made it very clear to me that under no circumstances would he want CPR to be attempted, I might not think he was making the ‘right decision’ but I would respect it because it is his life, and he would experience the consequences if he arrested and CPR was attempted – if he collapses, I tell 999 paramedics that he had made it clear to me that he would never want attempted CPR but the paramedics attempt CPR, ‘then I’m not happy with the ethics of 999’.

When EoL patients are at home, and capacity has been lost, discussions about ‘what should happen’ can lead to disputes, for example between a GP and a family carer. The only thing I am 100% certain of, is that a family carer’s ‘well, I’m not going to do that, because my dad made it perfectly clear to me he would have refused [that course of action]’, is legally (and in my opinion morally) correct. It has to be legally correct: because it follows the fundamental ‘a person is sovereign over his or her own body’ legal principle. There is no such clarity, once ‘professional ethics’ [and professional objectives] are applied to disputes between relatives, clinicians and police officers: and while ‘arguing the ethics’ with a GP is one thing, ‘arguing with police officers about ethics’ is a wholly unsatisfactory experience (for a live-with relative), immediately after a death, and when ‘the police officer is confused’.

Mike Stone Contact; mhsatstokelib@yahoo.co.uk

Competing interests: No competing interests

03 July 2016
Michael H Stone
Retired Non Clinical
None Private Individual
Coventry CV2 4HN