Patient Concern: the case against presumed consent
By Joyce Robins, of Patient Concern
It took a decade to establish a system of genuine informed consent in UK health care, so that patients are able to take their own decisions. The present government seems intent on throwing all that to the winds. We already have ‘presumed consent’ for uploading our health records onto the NHS database. Now there is a push towards presumed consent for organ donation. Perhaps the next step will be to assume we have consented to medical research on our bodies unless we have formally opted out in advance.
Presumed consent is no consent at all. How can we seriously suggest the absence of refusal signifies agreement in such an emotive area? Under such a scheme the term ‘donor’ would be ridiculous. A donation is gifted willingly, not taken by default.
Eye-catching initiatives
To be sure we will be offered the chance of opting out, but here the government feels it can rely on inertia, lack of knowledge and forgetfulness to cut the number of dissenters. It is presumably these same barriers that prevent the majority of those who favour organ donation in opinion polls (80-90% we are told) from signing up to the donor register. Or could it be that the ‘feel good’ answer given in the street is very different from a considered decision?
Since Gordon Brown made his announcement, supporters have constantly quoted the success of Spain, but they are careful to tell only half the story. Spain has three times the number of organ donors as the UK and they have a presumed consent law. That law was passed in 1979. Over the next ten years it had little effect and at that time their donation rate was the same as ours. It was only when a new head of transplantation revolutionised the whole system that donation went up by leaps and bounds. They now have three times more ICU beds and three times more transplant coordinators than us. The government has neglected to build up the necessary infrastructure and is now pretending that one of their infamous ‘eye-catching initiatives’ will provide the answer.
Paranoia?
If we follow this dangerous route, we may experience a backlash that will be damaging to our health service. Trust in doctors was badly dented by the scandal of Alder Hey and other hospitals whose practice was to harvest organs without a by your leave. It was rebuilt after the passing of the Human Tissue Act, which put informed consent at the heart of the process. The opt-out scheme will involve changing that legislation, to the delight of the BMA – and what will that do to our trust in doctors?
Patients, and their relatives, may begin to suspect they are more valuable as potential donors than as the seriously sick, costing money and beds. Paranoia? Perhaps not, when Gordon Brown intends to rate hospitals for the number of donors they produce.
Figures from UK Transplant, which runs the donation system, show that such a change is unnecessary anyway. Some 3,500 organs are lost each year – with possible donors not identified, families not approached for permission, etc. We should be putting all our efforts into tackling these areas, and into encouraging and facilitating donor registration. We could then end the disgrace of 1,000 people dying a year while on the waiting list – without the Big Brother state deciding to take charge of our bodies.
Joyce Robins is the co-director of healthcare watchdog, Patient Concern.
Head-to-head: the case for presumed consent
Gordon Brown has signalled his approval for a policy of presumed consent in order to boost the number of organs available for transplant in the UK. Here, the prime minister presents his case in support of the policy.
Real lives: the human face of organ donation
The parents of a young recipient tell of their gratitude towards his donor and the way in which the transplant has transformed their lives; and the family of a donor recount the difficult but ultimately rewarding decision to donate their loved one’s organs. Read their stories here.
