A young woman is dying in hospital. She is unconscious, and as she slips away the doctor in charge asks her parents if they will agree to her organs being used for transplants. Their answer is unequivocal. 'Yes, but not for anyone who isn't white.'
The doctor knows 6,711 patients are waiting for transplants, and 200 people on waiting lists are dying each year because a suitable organ has not been found. An impossible choice: accept a repugnant condition or risk the life of someone on the waiting list?
This is the sort of situation that faced staff at Great Northern Hospital in Sheffield who came under the media spotlight recently after allegedly acquiescing to a family's racist directions for an organ transplant. In the wake of the furore it became clear it was not unusual for conditions to be attached to organ donations. A Manchester doctor was reported in the national press to have said that he alone knew of 10 instances.
Yet by accepting conditions, hospitals are entering dangerous uncharted legal waters. 'At the moment hospitals should not accept organs with conditions,' says Sarah Woodhead, a solicitor in the medico-legal department of Howes Percival. 'They may be opening themselves up to litigation, not least because they may be breaching their Hippocratic oath if they let a donor's condition inform their clinical judgement on who should be the recipient of an organ rather than making the decision based on need.'
The problem is that neither Parliament nor the courts have ever considered the issue of conditional consent to organ donation and, for historical reasons, there is no proprietary right to a body, only a right of possession for disposal (see box). The main law on this is contained in the 1961 Human Tissue Act (HTA) which says: 'The person lawfully in possession of the body... may authorise the removal of any part of the body... having made such reasonable enquiries as may be practicable, [and] he has no reason to believe: a) that the deceased had expressed an objection to his body being so dealt with after his death... or b) that the surviving spouse or any surviving relative of the deceased objects to the body being so dealt with.'
The risk of legal action
Department of Health guidelines restate the HTA but advocate a strict interpretation of 'reasonable enquiries' so that considerable care must be taken over who is giving consent and to what they are agreeing.1
But conditions are not discussed, and NHS forms do not provide for donors or their families to state conditions.
One aspect of conditional consent was dealt with in 1989 by the Human Organ Transplants Act, aimed at banning 'commercial dealings in human organs intended for transplanting'. News of primarily poor foreign donors selling their body parts for cash was creating outrage at the time. The condition of consent then was payment, but clearly this act was aimed at live donors and will probably have no bearing on other conditions, such as racist ones.
One Canadian court decision - which saw relatives succeed in suing a hospital for the return of a body after it had been removed for an unauthorised post-mortem - may indicate the attitude English judges would take on the subject. But the law is unclear, increasing the risk of legal disputes.
'Discrimination in the NHS is a big issue,' says solicitor Philip Farrar at Mills and Reeve, which specialises in healthcare law for the NHS in the Midlands and East Anglia. 'Racist conditions in the public arena are void. If you are faced with a life-and-death situation, I would say ignore any condition agreed with the donor or their family. I would rather be sued for that than not saving a potential donee's life.'
Disputes are unlikely in live donations. The donor will know the recipient and the body part will be taken only for that person. The two likely areas of legal contention are from the relatives of a deceased donor where a condition has been ignored or from a potential recipient or their family if that recipient has been overlooked as a result of the hospital following through a condition.
Though it may in theory be possible for a donor's family to sue, perhaps for some sort of nervous shock resulting from the trauma of their or their loved-one's wishes being ignored, damages won would probably be nominal. They could succeed in suing for the return of the body part only if it had been taken for research and not if it had been transplanted.
A potential recipient or their family would perhaps have more chance of successful legal action under the Race Relations Act, for discrimination, or for negligence if the hospital failed to exercise proper clinical judgement when deciding who should benefit from a donation.
Plans to outlaw conditions
These impossible dilemmas may have been playing on the mind of health secretary Frank Dobson when, in the wake of the Sheffield case, he was quick to make it clear that conditions should not be accepted and vowed to outlaw them. The British Medical Association also voted through a rushed rider to a motion at its conference, calling for an opt-out or presumed consent system of organ transplants, stating that 'organs donated to hospitals must only be accepted unconditionally and for any suitable recipient'.
The General Medical Council has no rules relating specifically to conditions, but its medical practice guidance says: 'The investigations and treatment you provide or arrange must be based on your clinical judgement of the patient's needs and the likely effectiveness of the treatment.'2 The omission of any mention of non-clinical conditions being taken into account would seem to exclude their possibility.
British Transplantation Society president Professor Andrew Bradley argues: 'If we accept conditions then this opens a Pandora's box of problems. Hospital guidelines clearly reject conditions.' And the BTS booklet on standards in organ transplants is clear: 'Making a definite promise as to the allocation of organs must be avoided.'3 As such, Professor Bradley sees no reason for legislation on the issue.
There are other good reasons why conditions should not be accepted, says Dr Gary Slapper, director of the Open University law programme. 'Allowing racist conditions on organ transplants would be a bit like the situation in the fifties when there were notices for rooms to let that excluded blacks or Irish. Landlords said they wouldn't let their rooms if they were prevented from laying down these conditions and, they argued, as a result there would be fewer rooms to let. Overall, disallowing such conditions made for a healthier society and the same is true for similar conditions attaching to organ transplants.'
His point can easily be followed through to medical practice. Interracial transplants are often less likely to be compatible and there are shortages of organ donations within many ethnic groups, so to allow a situation where people felt they could exclude any potential organ from going to certain groups can only exacerbate the situation. And clinical staff can only carry out their work with their patients' trust. That is why there are rules about revealing confidential information to third parties. If conditions are accepted and not followed through, the confidence of potential donors will be undermined. Similarly, if patients on transplant waiting lists feel clinical judgement is being sidelined, what will this do to their faith in the hospital?
Certain conditions which do not exclude whole classes of person but are specific about the body part going to a particular person, such as a family member, should be allowed, Dr Slapper argues.
In many other countries these sorts of problems are minimised because they have systems of presumed consent or opt-out (organs will be taken for transplant at death unless the deceased or their family have stated otherwise). But in July the government shelved plans to introduce a similar system here amid protests it was an unnecessary interference with our rights.
Until Parliament or the courts reconsider the issue, clinical staff and hospitals will have to decide what is in the public interest. The shortage of donors may make it tempting to accept an organ despite repugnant conditions, but this is likely to lead only to greater clinical, ethical and legal risk.
Although no case involving conditional organ donation has come before the English courts, if such agreements continue to be made one is sure to appear. There is one way to ensure that it does not involve you: accept donations only unconditionally.
1 Department of Health. Cadaveric organs for transplantation - a code of practice. March 1998.
2 General Medical Council. Good Medical Practice. July 1998.
3 British Transplantation Society. Towards standards for organ andtissue transplantation in the United Kingdom. 1998.