Would you donate your body to Gordon Brown?
The PM now wants a system of ‘presumed consent’ to provide more organs for transplant. Yet it was his government obsession with consent that exacerbated the problem in the first place.
Even when it is pursuing the cause of unqualified good, it seems that the UK government can always mess things up through its characteristic combination of contempt for people, political cowardice, and a belief that issuing a new law from on high is a solution to any social problem. Take, as the most recent example, its attempt to address the real need for more human organs that can be used for transplants.
UK Prime Minister Gordon Brown has suddenly been converted to the proposal, supported by such bodies as the British Medical Association, for a new system of ‘presumed consent’. Instead of needing to give consent for their body – or that of a relative – to have its organs removed, this rule would presume that medics could take them without seeking permission unless the patient or next of kin explicitly requested to ‘opt out’ of the system.
There is undoubtedly a chronic shortage of organs available for transplant, and indeed for research purposes, in the British health system. We need more people to accept that their bodies should be used for the good of others after their death. We need a high-profile campaign to persuade patients that this is the humane thing to do. We need doctors and frontline medical staff to put the case for organ donation to patients and their families, considerately yet boldly, even in the difficult circumstances of imminent or recent death. All the available evidence suggests that this could succeed.
The one thing we probably do not need, however, is a new rule to make such consent ‘presumed’, and send the signal that, in the words of one outraged patients’ group this week, people are being turned from volunteers into conscripts.
In an ideal world, everybody would accept the distinction between the living person and the husk that is a corpse, so that all human bodies could be used as required for the good of living people. That is one form of recycling that we at spiked can wholeheartedly endorse.
However, the generally recognised fact is that we live in a less than ideal world. And that situation is not going to be rectified by any New Labour diktat. Issues such as consent have to be dealt with in the specific social context where they emerge. In the context of today, I am less than keen on Brown’s proposal to introduce a system of presumed consent. It could only shift the balance further away from the principle of personal autonomy and choice towards the assumption that the authorities know what is best for us – an increasingly prevalent notion in our culture, particularly around health issues. More concretely perhaps, whereas a campaign for more donations to medical science could win widespread public support, trying to impose such a formal rule risks further complicating relations between patients and medical staff, with the potential to deepen feelings of public mistrust and alienation.
The government must bear a heavy responsibility for bringing about this unsatisfactory situation in the first place. New Labour now poses as the champion of organ donation for the greater good, with the support of leading medical bodies. Yet it was the New Labour government that has stitched up the health service on the issue of consent over the past decade.
The Blair government – with Brown at its heart – politicised the issue of consent for organ and tissue donation around the so-called ‘body parts’ scandals of a few years ago at Alder Hey and Bristol hospitals. In response to the ‘revelation’ that doctors had long retained organs, including those of many children, for research and teaching without clear permission, the government institutionalised in law the heavy-handed principle of ‘explicit consent’. Patients or families must be approached to give detailed permission for any use of a body after death. This formalisation of the issue of consent has had disastrous consequences for the numbers of post-mortems carried out and of organs donated in the UK. Brown and co should hardly be surprised if it now starts a hullabaloo when they apparently switch from insisting upon ‘explicit consent’ to ‘presumed consent’ overnight.
The notion of seeking consent, from the individual or the next of kin where necessary, has to be an underlying principle of the health system. The clinical expertise of doctors and medics is the crucial factor in deciding what needs to be done. But it should not override what the patient wants. In almost all cases, of course, patients sensibly take the advice of doctors and submit to the treatment prescribed. But where they do not, as in the extreme recent case of the 22-year-old Jehovah’s Witness who died after giving birth to twins in November, having refused a blood transfusion on the ground of her religious convictions, their decision should be respected however foolhardy it might seem to others.
The question of consenting to the use of body organs for transplant is slightly different, since it arises after the death of the patient. Yet even here it remains important ultimately to respect the wishes of the patient and their family, regardless of whether they are motivated by ancient religious superstition or modern body fetishism. The body is no longer a person, but neither should it be automatically assumed to be a nationalised asset.
In the past, doctors sought permission to use bodies for post-mortems and other procedures in an informal, private and often understated fashion. However, that all changed when New Labour turned consent into a blazing public political issue when the body parts scandals first broke in 1999. It had long been common practice for doctors – and not only those at Alder Hey or Bristol – to retain body parts and tissue, including from dead children, for research and teaching. When this was ‘exposed’, however, the government and medical authorities decided that what had been standard practice should now be treated, retrospectively, as if it were a crime against humanity. To read much of the comment from the time, one might have thought that the medics had taken the body parts for reasons of personal sadism rather than scientific inquiry. Ministers and medical authorities fell over themselves to issue apologies to anybody who would listen, and self-appointed small groups of ‘patients’ representatives’ were elevated into the new moral arbiters of medical ethics.
This wave of unhealthy and morbid concern for the dead, politicised by the New Labour government as a stick with which to beat the traditional medical profession into line, had traumatic consequences. It created an entirely unnecessary crisis of public confidence and trust, and led to a waste of scarce medical resources as hospitals scrambled to find the ‘owners’ of old body parts and tissue. One longer-term result has been a drastic reduction in the number of post-mortems carried out within the health service, creating serious problems for medical research and training while obviously doing nothing to address the shortage of organs available for transplant.
This moral crusade by New Labour resulted in the Human Tissue Bill, which initially demanded that researchers seek explicit consent even to use tissue samples that had been taken years before. The final version passed into law has enshrined the principle of ‘explicit consent’ and helped to bring about a situation where, as was noted on spiked at the time, it arguably became easier to retrieve the organ of a long-dead relative for burial than for a living person to obtain one for transplant.
It is well worth revisiting what Dr Michael Fitzpatrick wrote here amid the fallout from the body-parts scandal in March 2001:
‘When I was a junior hospital doctor, one of my jobs was to ask relatives of the recently deceased to give their consent for a post-mortem. I used to explain that this was partly to confirm the cause of death, but also for research and teaching purposes. As I recall, we used to indicate that tissues might be removed and sent to the laboratory for further studies. Most families, believing - quite correctly - in the value of this process, set aside their current anguish and agreed…
‘It is difficult to know what level of consent to this process bereaved relatives, urged on by diverse zealots and pundits, and indulged by self-abasing doctors’ leaders, now want. Should they be shown a video of a post-mortem? Should they be provided with a list of organs, so that they can put a tick by the spleen and a cross by the heart? Should they be offered a choice of tissues which can be sent for further study - kidney (yes), testicles (no)? When does a certain amount of tissue amount to an entire organ? Should there be a limit to the scale of tissue samples - by weight or size?....
‘Medical authorities are now queuing up to apologise for practices that have been routinely carried out for decades - without injury to anybody and with substantial benefits to many. Furthermore, they are proposing to replace existing arrangements with a system that is in every respect worse than the status quo. It is likely to cause immediate distress on a vast scale to families suddenly presented with organs of long-deceased relatives. It will cause continuing distress to the immediately bereaved confronted with a detailed interrogation about autopsy. It will do long-term damage to medical research, which will inevitably be deprived of opportunities for research on post-mortem specimens.
‘The price of appeasing the morbid fears of a society that cannot look death in the eye is a measure that will compound such fears, while setting back medical endeavours to combat the causes of diseases that result in premature death.’ (See ‘Amnesty’ for dead organs: morbid anatomy, by Dr Michael Fitzpatrick.)
Having done so much to help create this crisis by institutionalising ‘explicit consent’, the government – presumably in Gordon Brown’s spirit of ‘change’ - now decides that institutionalising ‘presumed consent’ is the solution. Unsurprisingly, the patients’ groups that the government promoted as a human shield for its previous crusade are up in arms at this apparent turnaround. An administration that has hidden behind notions of patient choice, and even the absurd notion of a patient-led NHS, to advance its health reforms now stands accused of proposing to trample on patients’ rights.
Problems in the health service that were created or exacerbated by turning the issue of consent into a political football are unlikely to be resolved by more of the same. More laws, rules and regulations offer no easy way out of what should essentially be an issue of doctor-patient relations. Imposing formal must-do procedures is almost always a poor substitute for normal informal channels of communication.
The good news is that, if we had a proper public campaign to persuade more people to consent to donating bodies, organs and tissue, the chances are these measures would be unnecessary. Research conducted on separate occasions by the Academy of Medical Sciences and the Medical Research Council (MRC) shows a high number of people would be prepared to donate, once the case is put to them. As recently as November 2007, the MRC reported that ‘96 per cent of families approached will allow scientists to retain tissue samples from their loved one for the purpose of research. And almost one in five are prepared to donate whole organs.’
It is also worth noting that what has made a positive difference to increasing the number of organs made available for transplant in some hospitals is the appointment of a trained transplant coordinator whose job it is simply to ask. There are still only a few of them in the UK, but where they operate results are relatively impressive. This suggests that the impact of the ‘consent’ crisis on the self-confidence of the medical profession has made some doctors less willing even to broach the question of donation with patients and relatives. That vital aspect of medicine is unlikely to be improved by telling new doctors to take cover behind a ‘presumed consent’ rule.
Perhaps a better first step might be to try to remove issues of consent and medical practice from the body politic altogether.
Mick Hume is editor-at-large of spiked.