Informed consent deserves a little less respect
The conclusions of a ‘citizens’ jury’, reported recently in the British Medical Journal  shed light on some important weaknesses in the doctrine of ‘informed consent’. The doctrine is commonly thought of as canonical. Be careful about questioning its exalted status: you’ll be branded paternalistic at best, and the indictment may well involve unflattering comparisons with Dr. Mengele.
The ‘jury’, composed of 25 women, commented on how a leaflet on breast cancer screening should be re-drafted. The jury preferred:
- the term ‘overtreatment’ to ‘over-diagnosis’
-to express benefits in the language of lives saved rather than deaths avoided
- to talk about ‘benefits’ and ‘risks’ rather than ‘pros’ and ‘cons’
- to begin the leaflet by an up-beat reference to the numbers of lives saved by screening, followed by the caveat that a small number of women would be over-treated.
What was the priority: reassurance or accuracy? The majority (15), wanted both; 3 thought that reassurance was most important; 7 thought that accuracy was the priority.
How should one list the benefits and harms? Four thought they should be listed together in the same sentence, 8 that they should be listed separately, and 12 for mentioning them first separately and then together.
The point of all this is that there are innumerable different ways, all of which would be smiled on by Bolam , in which entirely accurate information can be conveyed. And yet tiny nuances are seen by the receivers of the information as significant.
This, of course, is common knowledge. I just cycled past a van which bore the slogan: ‘Bringing you the internet at up to 10GB [presumably per second]’. A slogan that said instead ‘Bringing you the internet no faster than 10 GB per second’ would have been vetoed by the company and would induce fewer contracts. The two slogans, obviously, make identical claims. Similarly in medicine and surgery. You want to dissuade a patient from an operation? Tell her that 1 per cent of patients die on the table, and that, if she survives, there is only a 60% chance that the procedure will relieve her pain. You want to persuade her to have it? Tell her that the chances of dying intraoperatively are very, very small – just 1 per cent – and that the procedure is likely to render her pain free for life.
It’s not just linguistic nuances that matter. In fact, since the evidence suggests that only a fairly small proportion of verbally communicated information sinks in  (we tend to hear either what we want to hear or what we fear hearing), non-verbal cues are crucially important. A raised eyebrow is worth any number of elegantly summarised RCTs.
Lawyers and ethicists have spent millions of words dissecting and refining the idea of informed consent. Of course the doctrine is important. Some terrible things were and are done in the name of paternalism. But the way in which medical information is necessarily transferred means that the doctrine cannot, in practice, have anything like the philosophical purity that warrants the theoretical refinement on which so many academic reputations have been built. What’s the point of blending your colours with exquisite care if, when you come to paint with them, you have to paint with a brush so big that they’re all mixed together?
So: keep the doctrine. It’s a vital bulwark against some nasty abuses, and an important vehicle for expressing the importance of patient autonomy. But don’t give it a status that, because of its rather iffy performance on the wards, it doesn’t deserve.
Exaggerated respect for informed consent can be dangerous in several ways. One is that it can make doctors jumpy. They can concentrate so hard on disgorging the information that they think will keep the lawyers off their backs that their humanity haemorrhages away at a time when it is often needed the most. Informed consent can crystallize clinicians into technicians. Patients, as Onora O’Neill noted,  generally want to be able to trust their doctors far more than they want to have laid out before them the lavish smorgasbord of clinical information that informed consent tends to suggest is mandatory. Patient appetite for that smorgasbord is likely to be suppressed by the inevitable circumstances of the consultation. Yes, accurate information provision is a part of that trust, but not the greater part. Giving patients what they want in terms of a humane, sympathetic, trustworthy doctor shows much more respect for patient autonomy than the gabbling of a data sheet or the tedious rehearsal of audit statistics.
One legal corollary of this is that the Bolam test should apply without caveat to civil claims involving the provision of information to patients. Lord Scarman (who, in the cornerstone case of Sidaway  questioned Bolam‘s rule in such cases) has been in the ascendant over the last couple of decades . His judgment should be relegated to a box of legal curiosities so that it can no longer steal doctors’ sleep. Only Bolam knows what it’s really like out there. It allows decent doctors to be themselves, which is what patients generally want them to be.
1. BMJ 2012; 345:e8047 (1 December 2012, p. 6)
2. The principle in Bolam v Friern Hospital Management Committee  2 All ER (cp Bolitho v City and Hackney Health Authority  AC 232, is that a doctor is not negligent if what he has done would be endorsed by a responsible body of medical opinion in the relevant specialty.
3. 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
4. Autonomy and Trust in Bioethics (Cambridge, CUP, 2002)
5. Sidaway v Bethlem Royal Hospital Governors  AC 871
6. See, for instance, Smith v Tunbridge Wells HA  5 Med LR 334; Pearce v United Bristol Healthcare NHS Trust (1998) 48 BMLR 118;; Chester v Afshar [2004} 4 All ER 587; and, importantly, the GMC’s own guidelines on consent. See too the discussion in Fovargue S and Miola J, ‘One step forward, two steps back: The GMC, the common law and ‘informed consent” (2010) Journal of Medical Ethics 36(8) 494-7
11 Responses to Informed consent deserves a little less respect
- Hank on New Book: The Ethics of Embryonic Stem Cell Research
- Ibrahim Taiwo Adeleke on A Dutch university prohibits a PhD student from thanking God in his acknowledgments
- Kim Etzerodt on Limiting the damage from cultures in collision
- Keith Tayler on Bentham and butterflies
- Keith Tayler on Bentham and butterflies