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The real scandals in organ donation consent

Headlines in a number of newspapers in the last day or two have claimed scandalous failures in organ donation consent in the UK. According to ‘Sky News’, organs were “taken without consent”, while the Sun claims that “NHS doctors took the wrong organs from the bodies of donors”. But it is important to put these claims in context. There are some bigger and more serious scandals when it comes to organ donation consent.

According to media reports in the BBC and Guardian, specific details of individuals’ wishes about organ donation were lost when records were transferred from the Driver and Vehicle Licensing Authority to the organ registry in 1999. This potentially affected a large number of records, but it appears to have at most affected 21 individuals who indicated that they wanted to donate but did not provide blanket consent to donate organs after death. These patients may have had specific preferences, for example that that they didn’t want to donate their eyes, but when doctors informed family members that their relative was on the organ donor register these specific requests or limits on donation had been lost. It isn’t clear in how many of these cases organs were donated which the patient would not have wanted to donate – family members may have recalled the patients’ desires and prevented corneal donation for example. The Sky headline is also hyperbolic, since it appears that family were consulted, and consented in all cases. But the worst case scenario is that 21 patients over 10 years ended up donating organs that they would have preferred to keep.

But let’s take a step back. There are 3000 solid organ transplants per year in the UK. There are also 500 patients per year in the UK who die while waiting for a transplant organ. Although about ¾ of the population indicate in surveys that they would like to donate their organs only ¼ are actually on the organ donor register.(1) When patients are diagnosed with brain death, but are potentially in a position to donate their organs doctors approach family members for consent to organ donation. Where the patient is on the organ donation register 94% of families consent to donation. But where the patient is not on the organ donor register only 60% of families consent.

There are two points to note here. The first is that for patients who have indicated during life that they would like to donate their organs if they were in a position to do so, a small but significant number of families override their loved ones' wishes and veto donation. In 2008-9 there were 14 patients in this category.(2) Assuming similar numbers per year this potentially means 140 patients since 1999. In real terms this means that families who have overridden patient consent to donate organs may have prevented 560 solid organ transplants over the same period and contributed to the deaths or prolonged illness of a similar number of patients with organ failure.(3)

The second point to note is that there is a much larger group of patients whose families choose not to donate but who would have wanted to donate even if they never got around to going on the organ donation register. Assuming that 75% of people would like to donate their organs, this means that in 2008-9 again there were 97 cases where the families of brain dead patients refused organ donation contrary to the actual desires of the patient. On rough figures this is almost 1000 patients over 10 years, and 4000 preventable deaths or prolonged periods of organ failure.

So, while the tabloids bay for blood we might put the recent controversy into perspective. Of course we need to make sure that patients’ wishes are recorded accurately and securely. But the real scandal is that every day patients’ organs are buried or burned when the patient would have wanted to donate them, and they could have saved the lives of those with organ failure. We need to seriously rethink our current approach to organ donation.

1. The potential impact of an opt out system for organ donation in the UK

2. UK potential donor audit 2008-2009 figures (personal communication)

3. Assuming an average of 4 organs donated per heart-beating organ donor

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2 Comment on this post

  1. 1) Your numbers assume, of course, that for every death with donation refusal, there were 4 potential organ recipients who matched the dead donor.
    2) Assuming your numbers are correct, donation by every willing donor (assuming further full need for all 4 organs) would save 444 lives per year, and reduce the death toll to 56 each year.
    3) On the plus side, if there are 3000 solid organ donations every year (not all from dead donors, presumably), and only 500 deaths, that has to be counted as a very good success rate for organ donation. The trick is to increase donation without creating an atmosphere of mistrust that might (potentially) result in more refusals.

  2. Yes – I assumed an average of 4 organs per brain-dead donor. Although it is theoretically possible for each donor to benefit 7 or more recipients (heart, lungs, 2 kidneys, intestines, split liver), the average number of organs donated by BD donors in the UK donor audit is 3.8.
    You are also right that if every donor who would not object to donation were to donate (for example if there were an opt-out system for organ donation) it would significantly reduce the current organ shortage.
    It wouldn’t solve the problem, since there would still be some patients who would die for lack of an available organ. There are also a much larger number of patients with organ failure who are arbitrarily denied access to organ transplantation because of the existing large waiting list. Such patients are not currently counted.

    However, I can’t agree with your last suggestion. While you are right that is important to maintain community trust, we should not underestimate the significance of the problem. There are 500 patients in the UK every year (18 patients every day in the United States) who die for want of a treatment that we have the means to provide. Large numbers of organs that could have been transplanted are needlessly buried or burned. This represents a major failure in public policy.

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