Health: When the need for research makes a sham of patient trust

Click to follow
The Independent Culture
I HAVE carried a kidney donor card for most of my adult life because, in principle, I think it right that people should hand on their organs when they no longer need them. But when I apply this principle to my children I wonder how I would react if, like the transplant counsellor in Pedro Almodovar's wonderful film All About My Mother I was asked to sanction the removal of their heart, lungs or - and somehow this is worse - their eyes.

I raise this for three reasons, one personal and two professional. I put my younger son on a flight to Australia last night and wondered how I would react if he died. He and his older brother, now at university, are probably at greater risk of dying in an accident than at any time in their young lives. It goes with the territory between childhood and adulthood.

When I rehearse the nightmare, as every parent does, of the midnight call, the dash to the airport, the scouring of the wreckage on the Australian road and, finally, my mind going blank as I am confronted by the surgeon asking for my son's kidneys. That is why I find it hard to put myself in the position of the Bristol parents who movingly testified last week at the public inquiry into the children's heart surgery disaster.

The Bristol parents spoke of their horror and distress at discovering, in some cases years after their children were buried, that their hearts had been retained for research. It turns out that 11,000 are held in hospital banks around the country, most of them removed without consent.

I do not question the need for medical research - and I note the warning by Professor Robert Anderson, president-elect of the British Paediatric Cardiac Society, that if all those hearts had not been taken it would have set back medical research by 25 years.

But if it were my baby, and I were being asked if its heart might be removed (as hospitals now mostly do), uppermost in my mind would be whether becoming involved in that process, emotionally and practically, would actually interfere with my grieving.

For what the parents in that position are being asked to do, if only temporarily, is see their baby as a medical resource, an organ bank which could disrupt the painful but nonetheless necessary process of saying "goodbye" and letting go. No matter how great the needs of medical research, nor how significant the child's potential contribution, I would want to set the needs of the grieving parents above them.

Which brings me to the third, related reason for raising these issues - a remarkable surgical experiment performed on Parkinson's disease sufferers in the United States. Foetal brain cell transplants have been carried out on patients with Parkinson's in an effort to reverse the disorder which leads to an uncontrollable tremor. The results have been mixed but this has not stopped the idea from catching on and 18 centres around the world are now trying the surgery.

Then, surgeons in Florida and New York decided it was time that the pioneering treatment was subjected to the kind of rigorous controlled trials which are standard for the testing of new drugs. That meant giving the genuine treatment to one group and a placebo - in this case sham surgery - to a second group. As reported in The Independent yesterday, they found 36 patients who consented to be randomly allocated to receive the treatment or the sham surgery, which involved drilling a hole in the skull under general anaesthetic and then monitoring the progress.

Here again, doctors are asking patients to view a body - in this case, their own - as a medical resource. Indeed, one of the arguments presented to the patients to help to persuade them to take part in the trial was that it would advance medical knowledge in an area of particular personal interest to them.

But the sham surgery offers no benefits to the individual and carries considerable risks. Perhaps this would be justifiable if genuine consent could be obtained from the patients. But can it? In one arm of the study, patients who had had the sham surgery, and were promised the real treatment if it were proved effective, were eventually denied the real thing after a greater number of the patients who had the genuine treatment died. Despite this, the subjects were angry at being refused a benefit which they felt they had earned.

This highlights a truth about the doctor-patient relationship. Patients trust their doctors and believe they will do nothing to harm them. The misconception that research is designed to benefit the patients who are the subjects is difficult, if not impossible, to dispel.

The need for organs and for research is undeniable. But those who meet it are no longer patients - they are quasi-doctors and researchers, too.