A gift freely given: dialogue on organ donation

This week it was announced that liver transplants would be offered to ‘heavy drinkers’ in a pilot programme. Patients will be young (typically less than 40) and will have such severe liver disease that the chance of them surviving the hitherto accepted period of 4-6 months of abstinence are remote. This has raised concerns that people will be less likely to sign up to be organ donors.

Here two people discuss donation. A has been put off by the idea that active drinkers might receive his liver, while B takes a more philosophical stance, and challenges A’s hesitancy.

After the main dialogue there are extended footnotes on changes that have been made to organ donation law in Wales (‘soft opt-out’) and on the involvement of families in the decision to allow organ to be retrieved.

oOo

A “I was keen to donate my organs when I died, but I’m not so sure now. They’re going to give livers to drinkers now, without even making sure that they can stop. It’s crazy. I know they can’t help it, I know there are a million back stories and life events that lead to alcoholism, but I think it gives the wrong message – don’t worry too much, if your liver packs in there’s a chance you could be rescued. Well I’m not sure I want to be one of those who gives a liver only for it to be ruined within a year or two by their addiction. We do all have the ability, and the strength, within us, to stop drinking…if we want to.”

B “So it’s weakness. They should be allowed to die because they are weak?”

A “They have a death wish, that’s what I’m saying. Whatever the reason for them not being able to stop, and perhaps it doesn’t really matter, the fact is that if they are given a new liver what’s to say they won’t carry on drinking.”

B “But you realise, don’t you, that you can have no idea who will get your liver. It could go to a teenager who stupidly overdosed on Paracetamol, a haemophiliac who contracted hepatitis C from contaminated blood products, or a blameless sufferer of inherited disease. Or half of it could go to very young child. If you don’t give your liver, then it will be harder for those people to be treated. You can’t predict or determine who gets it.”

A “But the chances of it going to an alcoholic will be higher. And as I say, I don’t like the message it gives. There’s so much…latitude nowadays. For patients who have inflicted damage on themselves.”

B “So is it a political or social comment that you will make by not donating? An attempt to influence society in some way.”

A “I wouldn’t say that.”

B “But it’s your opinion on the subject of addiction that is being translated into your decision not to donate.”

A “Well…it is my decision, after all. It’s my body.”

B “You presume it is, but you will be dead.”

A “Are you suggesting the state takes ownership?”

B “Legal ownership is a vexed question, but the more relevant question is how the state manages your right to decide.”

A “Involuntary inclusion on the register of donors has been considered and thrown out, hasn’t it. The ‘opt out’ was debated in Wales, I don’t know what came of that [1]. But what you’re suggesting is ‘no opt out’! That’s extreme. That sounds like the Chinese prisoners [2].”

B “Imagine this. Imagine another person, a hundred miles from here, having the same conversation with a friend. And imagine he is intending to put himself on the register of donors but is equally uneasy about, say…a convicted criminal receiving his liver or kidney or whatever. He wants to add a caveat to his donor card, that his organs can go to anyone as long as they have not been convicted of a serious crime in the past. What do you think of that?”

A “I recognise the intention, and sympathise with it, but I also recognise that it’s probably not practicable. Better to just not donate if there are going to be stipulations or exclusions. Because, as you say, you can’t control who gets your organs.”

B “So this man will not donate. Another lost donor. And taking the argument further, there may be people who are uneasy about other groups receiving organs, ethnic groups, religious groups, or those with different sexual orientations. They too will have no choice but to not donate. In fact, if we accept that anyone with any concerns about their organs being used to prolong the life of another about whom they have some moral or religious or racial misgiving should probably not go on the register, then we have automatically shrunk the pool of organs by a considerable percentage. Having made a great advances in the science of transplantation, we now elevate the instinctive judgements, dare I say prejudices, of people above the opportunities that their organs might provide. Does that sound right?”

A “But hang on. You’ve gone from alcoholics to minority groups in one leap. None of those groups will be engaged in anything specific to their identity that will damage the liver. I’m not refusing to donate because I don’t want some other person to survive – what do you think I am! – but because I don’t want my liver to be wasted.”

B “That’s been considered. The trials show that the rate of liver wastage is no higher than in other groups, because the alcoholism is monitored and treated intensively. You know about Hepatitis C? Well, that always recurs in the new liver if it is not eradicated before the transplant (which it rarely is), and very large numbers of donated livers are used to replace previous transplants that have been re-infected. So many of the livers being given now are what you might call ‘wasted’, except they were not wasted because the patients benefitted hugely from receiving them. The ‘waste’ argument is a weak one. What I want to pin down is this – do donors have any right, any right at all, to have a view on the moral or character background of potential recipients?”

A “As normal, opinion-forming human beings, we are all bound to have a view. If I donated a liver and somehow knew, in the afterlife, or more to the point if my family knew, that it had gone to a previously convicted, albeit rehabilitated et cetera et cetera child-killer, I would be so angry.”

B “Your family would be angry. You’d be dead.”

A “Yes, my family would be angry. And they have a right to an opinion too.”

B “OK, so you wish to transfer your objections to your family after death.”

A “They are the natural inheritors of a potential donors wishes and concerns, aren’t they?”

B “It’s arguable.”

A “Are you now suggesting that families have no say in this?”

B “They will bring their own moral structures and pre-judgments into the argument.”

A “No, they will do their best to express what they think I felt about it. They are the best placed to do that.”

B “And you think families can do that without colouring the subject with their own opinions?”

A “I don’t know. But they have to be consulted.”

B “You’re right, families can veto organ donation, even if the patient made it clear that he or she wanted to donate. Doctors won’t take organs in the face of strong opposition, and whether that it acceptable or not has been debated at length [3]. But let’s assume your decision, taken before death, is carried through. How do you reconcile your understandable concerns about who might get your organs? This is how I feel about it. If you would receive an organ from a random person, then you should agree to donate to a random person. And if you do decide to donate, as an act of altruism to humanity, then you should accept that the range of possible recipients will include all that humanity has to offer. All sorts. And you should trust that the donation system will have in place checks to reduce as much as possible the risk of ‘wastage’, be it through drinking, or recurrent hepatitis C, or repeated overdoses…the essential decision is Am I happy to help my fellow man or woman who will die without a transplant? Am I happy to make that contribution to society, even despite the fact that there are some aspects of society that I do not like, and do not sympathise with. Have I persuaded you?”

A “Your reasoning has. But what you miss, I think, is that the decision is an emotional one. That’s the trouble you see. People are led by their hearts, not their minds.”

 

Footnotes

1] China

Executed prisoners have their organs harvested (without prior permission), although it is said that this practise will soon come to an end.

2] Wales

A ‘soft opt-out’ has now been passed into law and will come into effect in December 2015. This means that people living and dying in Wales will be assumed to have given their consent unless they have made the effort to opt-out. This checklist is from the Organ Donation Wales website.

You will be treated as though you want to be an organ donor unless:

  • you have already registered a decision to be a donor (opted in) or
  • you have already stated you do not want to be a donor (opted out) or
  • you have appointed a representative to make a decision about consent on your behalf or
  • you lack capacity to understand that your consent could be deemed or
  • a person in a relationship to you objects at the time of your death, on the basis that they knew you did not want to be a donor

In 2008 the Organ Donation Taskforce looked into what effects an opt-out system might have attitudes to donation. It took a very cautious view. It referred to experiences in Brazil and France:

There are two examples of a negative impact of presumed consent policies. Brazil adopted a ‘hard’ presumed consent law in 1997, with opt out denoted by a note on an id card or driving licence. The law had to be repealed in 1998, principally because of mistrust of government and accusations of body snatching.

In France, which has a variation of presumed consent, there was an incident in 1992 in which corneas were taken from a 19-year-old road traffic accident victim whose parents had consented to only limited organ retrieval. This resulted in a great deal of negative press coverage of the medical profession, despite the clinicians having complied with the strict letter of the law, and damaged public trust in the organ donation system for some time.

They concluded that….

[we are] not confident that the introduction of opt out legislation would increase organ donor numbers, and there is evidence that donor numbers may go down.

 

3] The family veto

The role of families hit the headlines in 2012, when David Shaw (a lecturer in medical ethics) wrote an article in the BMJ criticising the medical profession for acquiescing to the family veto, especially when the deceased had put their name down on the donor register. In an interview he stated that 1 in 10 families acted in this way, and a higher proportion refused donation when asked about donation and the patient was not on the register. He suggested that families often regret this decision because they have denied their relatives express wish, and also the fact that ‘their decision may have caused deaths or suffering for other patients.’

The Organ Donation Taskforce also examined the role of families. It felt that their opinion was important, and that the decision to donate should rest in their hands.

            There is an argument, advanced by some, that a system of presumed consent would relieve families of the burden of making a decision in the absence of any indication as to the deceased’s wishes. The Taskforce finds this a somewhat paternalistic view, at odds with the ethos of today’s NHS. Further, our evidence from donor families was that they stressed the importance to them of being involved in the decision to donate and of being allowed to make the decision that was right for them at the time. The Taskforce found the evidence from donor families compelling.

Additionally, the taskforce also found that recipients preferred to know that the donated organ had been given ‘freely’ and that the family was in agreement.

            Recipients of transplants reported that it was important for them to know that the family of the donor had been involved in the decision and were comfortable with it. They also stressed the importance of knowing that organs had been freely given. These families spoke movingly of the concept of organ donation as a gift, and were concerned that an opt out system might undermine the principles of organ donation as a gift.

They concluded that systems where the opinion of families was not taken into consideration

has the potential to erode the trust between clinicians and families at a distressing time. The concept of a gift freely given is an important one to both donor families and transplant recipients. The Taskforce feels that an opt out system of consent has the potential to undermine this concept.

The Christian Medical Foundation Head of public Policy, Phillipa Taylor, expressed her concerns about the exclusion of the family in this decision in a September 2012 blog post. With regard to ownership of the body in the context of an opt out system, she wrote,

            The assumption about whose body it is begins to move from personal ownership to state ownership. Unless the state wishes to suggest that the deceased now belongs to it, the family must have the right to become his/her spokesperson.

            As we have always said, CMF is supportive of organ donation in principle. However we are not supportive of presuming consent when it has not been given, nor do we support overriding the family and the important role they should play. God designed human beings in His image to be relational (Gen 1:26,27, 2:18-25) and the Bible everywhere assumes the significance of the family.

It seems the ‘soft opt-out’ system adopted in Wales has taken these views into consideration.

 

oOo

spokenunspokenPAPER

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