By Charles Foster
Informed consent, in practice, is a bad joke. It’s a notion created by lawyers, and like many such notions it bears little relationship to the concerns that real humans have when they’re left to themselves, but it creates many artificial, lucrative, and expensive concerns.
Of course there are a few clinical situations where it is important that the patient reflects deeply and independently on the risks and benefits of the possible options, and there are a few people (I hope never to meet them: they would be icily un-Falstaffian) whose sole ethical lodestone is their own neatly and indelibly drafted life-plan. But those situations and those people are fortunately rare.
Completely informed consent is obviously impossible.1 For any course of treatment there is a vast number of possible complications. Simply to list them would be out of the question. To interrogate systematically the studies that described or posited them would be the work of many professional lifetimes. No clinician can know, even for the procedures they undertake regularly, all the literature describing all the possible sequelae. And they cannot relate, for each patient, all the knowledge that they do possess. Judgment has to be exercised in each case about what to say and what not to say. Only in very easy cases will it be obvious what should be said – such as in the UK Supreme Court of Montgomery v. Lanarkshire Health Board –where the dangers of vaginal delivery as opposed to Caesarean section should plainly have been explained. Easy cases make bad law.
Patients take in and recall little of what is said – however intelligibly it is explained,2 and by and large what matters more to patients than respect for an atomistic, western view of their own autonomy is to be able to trust their doctor.3
The General Medical Council (GMC) is currently undertaking a review of its consent guidance. It notes, in a bland understatement behind which one can hear deafening howls of outrage: ‘Doctors are telling us that increasing pressures and demands on their practice can make it difficult to seek and record a patient’s consent in line with our guidance and the law.’
Quite right: hard-pressed doctors are deluged with paperwork generated by the consent process. Thousands of hours of clinical time are wasted on an exercise that has nothing whatever to do with the protection of patients’ interests.
Some patients, for whatever reason, don’t want to take part in this charade. They want to say: ‘Do what you think best, doctor. I trust you’.3 But it’s not easy to opt out.4
The GMC has issued a draft guideline in the course of its consultation. Under the heading ‘When patients do not want to be involved’ the guideline says:
‘Sometimes patients may want someone else to make a decision for them. Or they may want to make the decision, but don’t want any information about the options. If a patient who has capacity asks you to make decisions on their behalf or wants to leave decisions to a relative, partner, friend, carer or another person close to them, you should try to find out why and explore whether you can take any actions that might reassure and support them. You should explain why it’s important that you and the healthcare team are confident that the patient has made an informed decision about how to proceed. If, after discussion, a patient insists that they don’t want even this basic information, you must explain the potential consequences of them not having it. This might include being unable to proceed if you are not confident thattheir consent would be valid, or if you are not confident that the proposed course of action would be beneficial to the patient overall. You must record the fact that the patient has declined this information. You must also make it clear that they can change their mind and have more information at any time’.5
Here’s my paraphrase: ‘Unless you let us ram down your throat the information that our lawyers say we must, you might not get the treatment we think you need. Open wide….’
Or, if you prefer a more philosophical version: ‘Our account of the ruling principle of autonomy is more important to us than your welfare.’
Enough of this madness. Here is my proposal.
An NHS Trust should be established which is statutorily exempt from the GMC’s consent provisions. Its patients will be permitted to say: ‘I have decided, in exercise of my autonomy rights, to allow my doctors to do whatever they consider is best for me. I have chosen not to be burdened by discussion or troubled by vain deliberation.’
There would have to be some exceptions to this general exemption. The exemption should not, for instance, apply to best interests determinations in relation to incapacitous patients. And the clinicians should enjoy no immunity from suit in barn-door Montgomerytype cases. But the general idea is eminently workable.
It would be enormously popular with clinicians. The Trust would attract the brightest and the best – technically superb clinicians who would rather spend time caring for patients than filling in forms and reading out lists of baffling and frightening possibilities. The quality of the clinicians recruited would mean that the patients could truly trust them. Swaggering, Lancelot-Spratt type paternalists would be easily filtered out at the recruitment stage or in subsequent reviews. Clinical outcomes would be better, the saving of clinical time would be enormous and so, Mr. Secretary of State for Health, my proposal makes excellent economic sense.
References
1. For an earlier fulmination by me about this, see here
2. See, for instance, Turner P and Williams C, ‘Informed consent: patients listen and read, but what information do they retain?’NZ Med J 2002: 115(1164); U218; Scheer et al, ‘The myth of informed consent in rectal cancer surgery: what do patients retain?’ Dis Colon Rectum 2012: 55(9); 970-5; Lemaire R, ‘Informed consent: A contemporary myth?’ J Bone Joint Surgery Br 2006: 88 – B(1); 2-7
3. Onora O’Neill, Autonomy and Trust in Bioethics (Cambridge, CUP, 2002)
4. Charles Foster and Jonathan Herring, ‘Please don’t tell me’: The Right Not to Know’ Cambridge Quarterly of Healthcare Ethics (2011), 21(1):1-10
5. Supporting patient choices about health and care: Draft Guidance for consultation, GMC, 2019, [33]-[35]
I agree with your overall premise that informed consent can’t be fully informed and doesn’t always make sense.
However, your proposal, whilst it may make sense from an ethics perspective, makes no sense to an economist.
1) It is not that easy to identify the ‘best’ doctors. Look up asymmetric information. The swagger, the brand of tie, etc may all be seen as signals of good performance but don’t actually equate to good. Lots of expensive people spend lots of time in hospitals defining what ‘good’ is – there are major issues with standardised mortality measures. And it’s almost impossible for the ‘softer’ medical specialities where communication approach (even when the doctor is making decisions for you) are more important.
2) If all the good doctors work for this hospital then why kind of doctors work at other hospitals? Contravenes your more recent post on utilitarianism. The supply of doctors is inelastic in this country (takes a long time to train them, not that easy to import). If all the ‘good’ doctors were in this hospital then it’s a bit of a zero sum game and the other hospitals and patients bit screwed.
3) Impact of being informed and consenting (or perception of it) on success of treatment. Patients (everyone really) far more likely to follow through on stuff if they’ve made the decision. Outcomes and recovery likely to be much better.
Many thanks for this, L. To take your points in order:
1. Yes, tricky indeed. But every doctor is better than they would otherwise be if they don’t have to spend hours on irrelevant explanation and form-filling.
2. My flagship Trust will indeed cause a minor haemorrhage of talent. But once its success is evident, all Trusts will start to work that way, and then my point 1 will apply – thus raising standards across the board.
3. I’d be interested in the evidence for this assertion.
I agree that the doctrine of informed consent has become overly complex. However I have some reservations about this being caused by too much respect for autonomy. Indeed it might be argued that the need for autonomy to concur better with the doctrine of informed consent has led to our concept of autonomy becoming overly complex. Perhaps the idea that informed consent is based on respect for autonomy is playing mere lip service to autonomy and the doctrine of informed consent stands alone. Informed consent is primarily concerned with patients making good decisions according to some accepted norms. I would suggest that autonomous decisions need not be good decisions according to some accepted norms. If autonomous decisions must be good decisions then do we have any need for the concept of autonomous decisions at all? Autonomous decisions can simply be replaced by good decisions. If this is so then perhaps we should reject a substantive account of autonomy and adopt a more primitive or Millian account. Basing informed consent on such an account might reduce the information requirements of informed consent unless additional information is requested and in some cases patients could make autonomous decisions simply to trust their doctors. I deal with this in greater detail in wooler.scottus, Autonomy and Beneficence
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