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HomeNewsPhilippa Taylor: Why organ donation must be a choice, not an order

Philippa Taylor: Why organ donation must be a choice, not an order


‘Last year 500 people died waiting for a transplant because a suitable organ was not available. So to help more people, we will move to an opt-out system for organ donation.’

If the Government gets its way, unless you carry a donor opt-out card or specifically register your objection, your eyes, lungs, heart, liver, pancreas, kidneys, eggs (?) – any body part presumed useful by the medical profession – will, on death, be removed for the common good.

Why not? It is an attractive and obvious way to increase numbers of organ donors. Wales passed this law in 2015 so it is not new to the UK. Besides, what use does anyone have for their body after he or she has died?

In response: first, there is little evidence that presumed consent laws increase organ donation rates, and more to show that it can have the opposite effect! A proven way to increase donation rates is using specialist nurses to approach the family after a death. NHS data shows that rates of consent were 69 per cent when a specialist nurse for organ donation was involved, dropping to 28 per cent when one was not.

Secondly, at one level of course a person has no interest in his or her body after death (note, not during death – but that needs a whole new blog on how organs are removed and how the dying body is handled to obtain organs as fresh and useable as possible). But families do still have an interest in the body.
Under the UK Human Tissue Act 2004, a family is permitted to veto the removal of organs from someone who had given consent to organ donation if relatives have strong objections to organ retrieval.
This family veto must stay if presumed consent is introduced, and when the state steps in. Here’s why:

1. Increased distress. The Bristol and Alder Hey controversies were fuelled by the perception that families had no real power in decision-making about what happened to their loved one’s body after death. Similarly, there are situations where organ removal will increase distress for a family at a tremendously difficult time. The decision about whether to agree to organ removal usually has to be made quickly, and families might well find that they cannot agree to it.

Many of the situations where organs are most ‘useful’ will arise from cases of sudden death, often in an accident and often of a young person. The family will be going through deep trauma at the time, which needs to be delicately handled. Many will be glad to agree to donation (which is when specialist nurses can help) but not all, and if their wishes not to allow the organs to be removed (and the body, in effect, to be mutilated), are overridden, even if not in accordance with the wish of the deceased, this will increase their distress. One person describes his own experience:

‘I always thought organ donation was an obviously good thing, and then my seven- year-old daughter died in a car crash. It is the most impossibly intrusive, painful, awful thing to consider the partial mutilation of your dead child’s body immediately after such an event. I haven’t felt the same about donation since this awful experience.’

Why, asks this writer, at the moment of profound grief should a family have to contend with the state over who owns the body of their loved one?

2. Treatment of the body. The Bristol and Alder Hey controversies also showed how important the body is to bereaved parents and friends, illustrating the need to respect it even in death. It is not simply raw material. Some families feel the body needs to be buried whole (unrelated to religious or cultural reasons) and some families want to stay with the patient after death, which is not always possible with organ retrieval.

3. Cultural sensitivity. Not all cultures or religious groups are as individualistic and autonomy-driven as our mainstream Western tradition, and in many other cultures individuals’ wishes do not override those of the family. In such situations it may well be culturally insensitive to insist that they do.

4. Lack of trust. Some people fear that if they became seriously ill, they would receive inferior treatment if they were donors than if they were non-donors because the hospital wants their organs. This fear – which need not be well-founded to have an effect – would increase if family views were known to be overridden. People look to their families to protect them when they cannot protect themselves. Publicly overriding families could make patients and their families feel more vulnerable to doctors skimping on their treatment and so more reluctant to donate.

Moreover, some donors will consent to donation of only certain organs, and so will look to their families to ensure that their specific wishes are carried out.

5. Concern about consent. Claims that anyone can ‘just opt out’ are predominantly made by educated, middle-class and well-informed advocates of presumed consent.
But consider the reality of guaranteeing that every single person is informed, truly understanding of ‘presumed consent’, knows the options and can easily opt out.
Can consent be truly assured from those who are disorganised, apathetic, less well-educated or informed, isolated, lacking full capacity, of different languages and/or cultures, suffering from (temporary) mental illness, dependent, those who have less ready access to information and the internet and those who change their minds? There is no way consent can be presumed for every single person, even if (in the unlikely event) millions was spent on advertising over many years! The importance of allowing families a veto in such cases is obvious.

There may also be evidence that the deceased person had changed his or her mind, or the family might consider that the context of organ retrieval has changed or is different from what the deceased probably expected, such as how long a family is able to stay with a body after death. If a family wishes to stay with the body after death, that is normally possible in the case of donation after brain death but not in the case of donation after circulatory death because of the need to retrieve organs quickly.

6. Ownership of the body. After death, questions arise as to who ‘owns’ the body. Under presumed consent, the assumption moves from personal ownership to state ownership. But as Laura Perrins argues, organs are not the property of the state so unless the state wishes to suggest that the deceased now wholly belongs to it, the family must have some right to become his or her voice.

Currently organ donation is voluntary, a gift, hence the term ‘donation’. So your body is yours while you live and your family’s when you die, and any organs can be freely donated. ‘Presumed consent for organ donation’ is a misnomer as it is no longer ‘donation’ but appropriation of organs by state mandate. Which means that organ ‘donation’ is now no longer a gift but a duty.

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Philippa Taylor
Philippa Taylor
Philippa Taylor is Head of Public Policy at the Christian Medical Fellowship @PhilippaTaylor_

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