How much should you be told about your organ donor?

Trust in doctors to do the right thing. Organ by Shutterstock

The recent inquest into a case in Wales where two patients died following kidney transplants has focused fresh attention on the risks associated with transplantation. No transplant is risk-free, but the shortage of organs means that surgeons routinely consider using organs that push the boundaries of acceptable risk.

In this case, the donor was known to sleep rough and was a heavy drinker who died of meningitis caused by a parasitic worm It was this worm that ultimately led to the death of the recipients of his kidneys. The kidneys were turned down by several other hospitals (because of either poor function or the cause of death) before being accepted by University Hospital of Wales (UHW).

It is not clear whether UHW knew the full details behind other hospitals turning the kidneys down. But while this may sound worrying, surgeons make their own decisions to accept organs based on the risks and benefits to patients on their waiting list at the time – the poor function and cause of donor death may have rendered the organs too risky for patients at some hospitals, but they could have been seen as the best option available to patients elsewhere.

New case, familiar concerns

The recipient’s families have said that they would not have agreed to go ahead with the transplants if they had known more about the donor and the risks associated with these kidneys.

The problem of potentially harmful organs and lack of information – or sharing information – isn’t confined only to kidneys. There have been similar cases where next-of-kin have gone on to discover information that may have changed the recipient’s decision to undergo a transplant using those organs.

Organs from smokers? Oxfordian Kissuth, CC BY-NC-SA

There was the patient who developed cancer following a lung transplant with a smoker’s lungs (an issue that has cropped up a number of times before), and another who died after receiving a heart transplant from a suicide victim who had a history of drug abuse.

Since these other cases, the information given to recipients has increased; alongside the general risks about transplantation that are detailed on joining the waiting list, patients are also then told about any relevant risks regarding specific organs immediately pre-transplant.

The problem with informed consent

It is generally accepted that consent to treatment should be informed, but transplants come with specific challenges that can make it very difficult for consent to be truly informed. Risks associated with transplantation are especially complicated: there are risks of death after transplant, risks of non-fatal but serious complications, and of minor complications that have long-term health consequences. There are competing risks associated with turning down a transplant and staying on the waiting list – how quickly will a patient’s health decline, how quickly will they be offered another organ and will it be any better?

All of these risks are difficult to predict with accuracy, and surgeons often have to rely on the intuition that comes with experience and expertise to decide whether a particular organ is suitable for a particular patient.

Transplantation also takes place under significant time pressure. If I want someone to take part in my very low-risk research (which normally just involves being interviewed by me for half an hour), I give them an information sheet clearly outlining the risks (they might be upset by particular questions) and potential benefits (I might buy them a coffee) and give them at least 24 hours to make a decision.

Not a good deal. Aubergene, CC BY

Organs, however, can only survive for a limited time outside of a body. If a patient took 24 hours to make a decision on an organ, the organ would be wasted. And the longer a patient takes to decide whether they want to go ahead with that transplant, the less likely it will be able to be offered to somebody else if they turn it down.

Patients therefore have to make complex decisions in a highly pressurised and fast-moving situation, coupled with the knowledge that they are seriously ill and likely desperate after some time on a waiting list.

An organ is an organ

Then there is the question of what is relevant information. Organ donors come from all walks of life, and may have characteristics that some people consider undesirable. Patients may want to know information that is only relevant because of their own prejudices, such as the race or sexuality of the donor.

Patients may also be put off by information that is not necessarily relevant to the specific organ being offered, such as a kidney donor being a smoker or a heavy drinker.

Normally, providing more information is regarded as a good thing because it helps patients to make informed decisions about their own care. In transplantation, however, providing more information may make it more difficult for patients to accurately weigh up the risks and benefits and make an informed decision.

It is controversial and outdated to simply claim that doctors know best – surgeons don’t necessarily know what individual patients will consider worth the risk. Given the difficulties above, there are good reasons to not overload patients by increasing information provided immediately pre-transplant.

A better solution may be for patients to be given less specific information at the time of transplant but be asked instead to complete, in advance, a “risk profile” of the types of organ-specific risks they would be willing to take and to trust the medical team to not offer them an organ that did not meet their risk criteria.

What is very relevant about the recent kidney case, however, is that the surgeons themselves and the wider health profession need to be fully aware of what they too are accepting, and to ensure that what they consider an acceptable risk also matches the patient’s perception of what risk they are willing to accept.

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