A patient and a doctor lying hand in hand on the operating table. That was what came to my mind as I browsed ‘Consent: patients and doctors making decisions together’, the GMC’s new guidance. Consent, it rightly says, is a process, and obtaining it is a partnership. But ultimately the dialogue has to come to an end, and then the patient is on his own.
A doctor who has obtained ‘informed consent’ has done her duty. The patient has understood the risks and benefits and thought about what they mean for him, and has made his decision. On paper, it all sounds so very rational. But real life is rarely rational. Can there be such a thing as truly informed consent?
In the bad old days, obtaining consent meant shoving a form under a patient’s nose, months after their outpatient appointment and an hour before surgery. I wonder if what is now shoved is a handful of leaflets, and if so, whether they are provided in a way and at a time that actually helps the patient. Couldn’t an outpatient appointment be offered after the procedure has been agreed but before surgery? That way, once the realities have sunk in patients could talk to the surgeon about their worries: the rare side effect mentioned in the leaflet; waking up vomiting after the operation; who will look after Rover while they are in hospital. Surgeons are not like timeshare salesman; well, not usually, but a cooling off period would probably reduce the number of operations and improve the outcome of those that are performed.
Consent needs to be given with the heart as well as the brain. People smashed up in an RTA or rigid with pain from an acute abdomen just want someone to get on with the job. Where there is time for reflection, it helps if someone in the family, or a friend, or a character in a soap opera, has been through the procedure. This provides an emotional context for consent.
Consent to screening is perhaps even more fraught with pitfalls . Patients ask for a test because “it’s good to know” and “for reassurance”. But that’s not what screening is about. It is about identifying people with pathology. The trouble is the false positives. Investigations undertaken to establish that someone does not have a problem can create long-lasting damage to the body or psyche. A colleague of mine was so strongly opposed to the promotion of PSA tests that he vowed he would sue anyone who measured his PSA without his consent - at that time most private health screenings would automatically include PSA. That might not happen now, but the implications of screening tests are hard to comprehend, and the screening industry performs its PR well. In the US every man is urged to know his PSA: a mildly abnormal screening test is a useful sub-total wallet-ectomy. Doubtless so is a total body scan, in some quarters a popular birthday gift I am told. Don’t give me one. As a GP interested in screening and its benefits and costs, I should be better placed that most to know what I might be in for. But I waved a cheery “it’s nothing” to my husband when he dropped me off at the breast screening unit, and I was shaken when I was recalled. It was all right in the end, but the days before the appointment, the sitting in the waiting room, the further tests, waiting for the results, were a glimpse into hell.
Of course, it is possible to overdo the consent process. But between the choice of spending hours on pre-HIV test counselling and the “ Roll up your sleeve” school of consent, there is a middle way. The challenge is to make a hypothetical situation feel real enough for the implications to sink in, and risk tables just don’t do that.
When I worked for VSO, volunteers’ overseas accommodation was all too often a problem. Volunteers would complain that they hadn’t been warned. I would remind them of the lengthy pre-departure briefing course discussion on ‘what may go wrong’. “Yes,” they would say, “but you didn’t tell us loud enough.”
The Irish gave the Lisbon Treaty the thumbs down. It seems that the majority of the Irish support the EU, but the documents are too long, too complicated, too technical, for anyone to understand, including most of our representatives. So Eurosceptics were able to derail the approval by drawing people’s attention to the bit of small print – sometimes very small – that might permit something they didn’t like, be it abortion or conscription into a European army. Those emotional negatives killed off the concept of a European Union.
Marriage involves giving consent. But does being reminded barely a minute before the contract is made that the proposed union is ‘for richer for poorer, in sickness and in health’ count as informing of risks and giving the couple the time to reflect on their decision ? Has anyone ever stopped the ceremony to ask exactly how big a credit card debt constitutes ‘poorer’?
Context is all. Telling the world about one’s health on Facebook is one thing, letting information about one’s tonsillitis go on the Spine is for many people quite another.
It seems to me that useful consent is emotional consent. Sure, we need someone to run the risks past us. But we also need to feel what our decision might mean for us. That’s not got much to do with ‘numbers needed to treat’. It is about feelings and emotions. Perhaps a roleplay should be part of the consent process?