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The state has no right to decide the fate of my organs for me

By Caroline Farrow

Never Let Me Go, a novel by the brilliant British writer Kazuo Ishiguro, came a step closer to becoming reality this week at the same time as it was announced that Ishiguro was to receive the Nobel Prize for Literature.

Set in an alternate Britain in the 1990s, Never Let Me Go is the story of children who are brought up in a state institution, seemingly loved and nurtured by a group of teachers and carers, but the horrifying truth is that they are clones; organ donors whose bodies are destined to be broken up and distributed piecemeal. Their entire upbringing is predicated around bringing them to a calm acceptance of their fate and keeping them separate from the rest of society, until such as time as they can be used.

Like Ishiguro’s unfortunate donors, whom we learn are just as human as the rest of us, not least in terms of their yearning to discern their own personal identity and place in the world, the organs of UK citizens are soon to be deemed automatic property of the state, unless the donor registers an objection prior to their death, following an announcement made by Theresa May during her keynote speech at the Conservative Party conference this week.

It might sound hyperbolic, but the effect of this announcement means that the state is now custodian of your body upon death. Opting out may be an easy enough procedure, but up until now, organ donation was always considered an incredible gift made even more meaningful thanks to the fact that people had made an informed decision to opt-in when they were alive and able to give their full consent. If Theresa May’s proposed bill gets enacted into law, it will simply be presumed that if someone dies suddenly their organs are ripe for the taking, despite the fact that this may have been against their wishes or may indeed go against the wishes of the deceased’s family, which must always be respected.

Last year I was asked to debate whether or not the rest of the UK ought to follow the example of Wales, which introduced a system of presumed consent for organ donations in 2015. One of the things which astounded me then, when I was informally canvassing views, was the amount of ignorance that most people have about the issue.

While it is not my wish to deter organ donation, which is permitted for Catholics and has been encouraged by several popes, one thing that potential donors do need to be aware of is that in some cases, the organs need to be retrieved while the heart is still beating. The notion of ‘brain death’ where the patient is deemed to have permanently lost all cognitive ability, including functions such as being able to breathe independently, is one which is determined by experienced medics and is not the same thing as natural death. Prior to retrieval of organs, the patient is fully anaesthetised. That’s not meant to deter any potential donors (although there have admittedly been a handful of cases where patients have displayed vital signs and begun to rouse, just as they were being prepared for donations) but obviously if you are going to consent, which the catechism states as being morally necessary for donation, then it needs to be in full knowledge of the facts. All of the people I spoke to were working under the misapprehension that organ donation only occurred after the heart had stopped beating and clinical death had been declared.

Is it really possible to guarantee that every single person in the country is informed and truly understands what ‘presumed consent’ means? Those who glibly state that if you are so strongly opposed you will opt out, seem to presumed that everyone is educated, middle-class and well-informed and can easily opt out. Can we really assume consent from those who are (like me) terminally disorganised, apathetic, less well-educated/informed, isolated, lacking full capacity, those who speak different languages, come from different cultures, those suffering from (temporary) mental illness, those who don’t have ready access to information and the internet and what about those who change their minds? There is absolutely no way that consent can be presumed from every single person in the country, even in the unlikely event of a long-running advertising campaign, which would cost millions.

This is precisely why the family veto needs to be kept, especially when in some cultures and faiths, organ donation is not permitted. Is the government going to presume consent from the Muslim population, different strands of which do not permit organ donation? The scandals of retained baby parts at Bristol and Alder Hey hospitals demonstrate just quite how important the body is to bereaved relatives and friends after death and the need to respect it, rather than treat it as material to be plundered. The circumstances of donation can mean that things don’t happen as the deceased expected and it can mean that the family doesn’t get to spend time with the body after death.

One of the things which hasn’t been outlined is what is going to happen in the case of children who are unable to consent or opt-out. Are their bodies going to be treated as property as the state, with grieving parents unable to have any say? Very often, many of the situations in which organs will prove most ‘useful’ arise from situations of sudden death, often involving a young person. While many parents will readily agree for their child’s organs to be donated, others will find the prospect incredibly traumatic and not wish for their child’s body to be mutilated.

Mark Lambert, a UK Catholic blogger wrote that he always thought donation was an obvious good, until his seven-year-old daughter died and he discovered that it was an impossibly painful, awful and intrusive thing to consider, immediately after such a tragedy; being in such a dreadful position, as a bereaved parent, altered his perspective.

These are situations which require delicate handling. Do we really wish for the distress of the parents to be compounded by knowing that their child’s organs have been forcibly taken or forcing them to endure a legal process? This also feeds into another fear that people have, namely that if they are listed as organ donors, doctors may have a lesser inclination to attempt to save them if they are severely injured or ill. This, of course, is not the case; we ought not to doubt the good will and professionalism of the medics, but nonetheless presumed consent could understandable lead to a lack of trust between doctor and patient, especially if it was known that the views of their family were overridden.

Another false assumption made about presumed consent is that it will increase the number of available organs for transplantation, which as we know are in desperately short supply. However, evidence is pointing to the opposite conclusion. In 2016-2017, the year after the ‘opt out’ strategy was brought into Wales, there were three fewer donors and 33 fewer organs donated than in the previous year. The number of people on the register increased but at the same time the number of people opting out increased from 165,000 to 175,000 which means that those families can no longer be approached about donation.

In fact, the most proven way to increase donation is to use specialist nurses to approach the family after a death. Data from the NHS demonstrates that rates of consent are 69 per cent when a specialist nurse is used, dropping to 29 per cent when one is not.

Even if presumed consent for organ donors was an effectively proven method, it would still not render it justifiable. Our bodies are not the property of the state and donation should always be a gift, not a duty. Like many others I am now sorely tempted to opt-out. Whatever else you do, and I would strongly recommend writing to your MP, this demonstrates the need for all of us to have courage and have those difficult and sensitive conversations about what we want to happen to us, both when we are dying and after our death.

• Caroline Farrow is a Catholic journalist and broadcaster

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