Organ donation: When lack of consent is fatal for another

05 October 2018

Soon, people will be deemed to have given their consent to the use of organs for transplanting. Are there issues for those of faith, asks Robin Gill

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OVER the past few years, a significant shift of public policy has been taking place around Britain on organ donation. Instead of people “opting in” to become organ donors in the event of their death, government consultations have been testing the water on a change to an “opt-out’ (or “presumed” or “deemed” consent) system of organ donation.

Organ transplant surgery is a relatively new achievement in modern medicine. In Britain, the first organ-donation card was introduced in 1971. At the time, only kidneys could be donated. But, by 1994, when the NHS Organ Donor Register was set up to co-ordinate the supply and demand of donated organs, transplant surgery to replace the pancreas, kidneys, liver, heart, or corneas had become firmly established. By the end of 1995, more than 2.2 million people had joined the new database.

For the first time ever, the number of people in the UK this year having their organs donated after death has exceeded 1500, largely owing to government publicity. Nevertheless, there remains a serious shortage of available major organs. Many patients, who might well have benefited from a transplant, die while they are waiting for a suitable organ to become available.

Although opinion polls suggest that eight out of ten people support organ transplantation, only four out of ten actually register for donation. It is this gap that has prompted a shift in public policy to “opt out” rather than simply “opt in”.

In 2013, the Welsh Parliament passed its Human Transplantation (Wales) Act, enabling the first opt-out system in the UK. This has now been in force since 2015. The Scottish Parliament is considering a similar Bill in its Health and Sport Committee. And, in England, the Organ Donation (Deemed Consent) Bill is also at committee stage, with the intention of introduction in 2020. The Prime Minister has given the Bill unambiguous support.

There are complicated legal differences between these three pieces of legislation, but, in each case, safeguards — involving a so-called “soft opt-out” system — have been included.

For example, under the Organ Donation (Deemed Consent) Bill, both registered and unregistered objections by the “donor” must be considered. The Bill requires that the opt-out register must be checked, and then families consulted about whether they know about any unregistered objection (even if, in the past, the deceased opted in to the organ register).

istockCurrently, many people who could benefit from a transplant die while waiting for a suitable organ

Organs can be lawfully taken for transplantation only if there is no credible evidence, registered or unregistered, that the deceased had objected to organ donation. In other words, families are to have a strong say in the process. In addition, children under 18, people who lack the mental capacity to understand the changes, and people not ordinarily resident in England for at least 12 months immediately before their death, are excluded in the Bill.

 

DOES an opt-out system actually work, in the sense of making more organs available than an exclusively opt-in system? There is considerable dispute. Wales has not had its opt-out system long enough to reach a definitive conclusion. And across Europe comparisons are complicated by cultural, political, and religious differences.

For example, in Spain, organ retrieval has been considerably increased in recent years, but it has been accompanied by what some regard as financial incentives (Spanish sources consider them to be simply payments for extra work) for those doing the retrieving which other countries find unacceptable.

Most defenders of opt-out adopt a “common sense” position: they argue that closing the gap between public intention and action is likely to increase the availability of organs for transplantation. As so often with innovations, however, no one can be sure what the outcome would be.

Will the public accept an opt-out system? The early evidence from Wales seems to be clearer on this question. So far, only six per cent of the population have registered an objection to donation. A British Medical Association-sponsored opinion poll in January 2017 found that two-thirds of those polled in England, Scotland, and Northern Ireland supported the sort of change that had taken place in Wales.

Last November, the Welsh Government also published its own evaluation of the change. This suggested that there was high awareness and support for soft opt-out among both the Welsh public and NHS staff, albeit that some of the public were not clear about the difference between “hard opt-out” (where families are not consulted) and “soft opt-out” (where they are).

 

WHAT are the ethical and religious responses? Language is critical here. The term “donation” is problematic in much of the published literature in this area. I am a potential “donor” myself, as I carry a donor card and have opted in to the donor register. Whether my organs will actually be suitable for transplantation, once I have eventually finished using them, is another matter. More importantly, in what meaningful sense would I be a “donor”, if I had never made my intentions clear and my organs were taken in the absence of any objection reported by my family?

To get around this obvious problem, legislators tend to talk about “deemed” or “presumed” consent, arguing that, since most people agree with organ transplantation, it is more likely than not that a particular individual who had never registered an objection would agree as well.

But this causes other problems. “Consent”, in terms of the Mental Capacity Act 2005, involves people with capacity who can understand what they are consenting to, can retain this information, and can reach a settled conclusion on its basis. Yet, for someone who has died but, when living, had never expressed an opinion on organ donation none of this is possible.

The one thing that we do know about deemed or presumed “consent” is that, whatever else it is, in terms of the Mental Capacity Act (admittedly devised for a different context), it is not consent. At most, it is a deemed or presumed non-objection.

Another abiding problem concerns death. Ever since the first successful heart transplant, in 1967, some have argued that the medical definition of death was deliberately (and wrongly) changed, to allow for that and subsequent transplants of major organs to take place. On this basis, concepts such as “brain-stem death” disguise the fact that the “donor” is not actually dead when his or her organs are removed (and misdiagnosis still happens). A minority of medics, theologians, and ethicists continue to argue this position; in terms of their own premises, they have an obvious point.

As a theologian, I understand death to be a process, not a single event. At a physical level, hair and nails, for example, continue to grow, long after the heart and lungs stop. Bodily organs and tissues do seem to “die” at different stages.

There are also longstanding and puzzling theological differences between Christians concerning souls and resurrected bodies: souls (if there are “souls”) going straight to paradise (or not), and resurrected bodies waiting, unreconstructed (or not), for a day or two after death, or perhaps remaining “dead” until the Day of Resurrection in hundreds, thousands, or millions of years’ time. Even biblical fundamentalists find agreement on such issues evasive.

So, when do we actually die? And when, to put it crudely, do we stop being dead and start a new heavenly life? There is plenty of room for theological disagreement here.

 

I HAVE served on national medical-ethics committees for more than two decades, and have long campaigned for a soft opt-out system. Within the specific context of organ transplantation, I accept the principle that removing vital organs is ethical at the point when, medically speaking, the process of dying has become irreversible. Provided that brain-stem inactivity is diagnosed carefully, this does seem to be an irreversible point.

Sitting all night, many years ago, with the family of a young man who was on a ventilator after a road accident and who was diagnosed as “brain-stem dead”, convinced me that this was so. Despite their desperate grief, they gained much comfort from the knowledge that his healthy organs could now save the lives of others.

istockDoctors prefer transplant over dialysis in cases of kidney disease, as people tend to live longer and enjoy a better quality of life

The family did, at this point, seem to become “donors” in a meaningful sense. I would imagine that the young man thought that he was immortal, and had never given any serious thought to transplantation. So, to describe him as a “donor” makes little sense.

His grieving parents, however, could have refused to have his organs removed (and this refusal would have been accepted by the medical team). They did not. They chose to be compassionate, and to let vital parts of their beloved son go to other needy patients instead. A touching, compassionate, and telling “gift”.

None the less, there is still clumsy language that mars this important topic. Perhaps instead of talking about “donation” in the context of many opt-outs, we should talk instead about “not wishing to waste precious resources”, or, for believers, “not wishing to squander God-given resources”.

The Mission and Public Affairs Division of the Church of England, supporting organ donation, stated to the House of Lords ten years ago that: “The Christian tradition both affirms the God-given value of human bodily life, and the principle of putting the needs of others before one’s own needs.”

If we regard our hearts, say, as God-given, surely we should be prepared, once our process of dying has become irreversible, to let them be given to others in need. And we really should keep the word “consent” for those who do opt in, and find another term for those who have never done so. Language matters, as we all know, in such sensitive areas as cancer or HIV. We need a new vocabulary for opt-outs, too.

A final ethical term that can be considered here is that of altruism. There is a small but still significant amount of altruism demonstrated by the four out of ten people who do opt-in to the Organ Donation Register, or, say, are blood donors. There can be a great amount of altruism shown by grieving families who decide not to block the taking of opt-out organs for transplantation from someone they love, and for the benefit of strangers.

In addition, living donations of, say, a kidney often show a very substantial amount of altruism within families, and even more when given to strangers. Even if a soft opt-out system reduces some of that altruism, it does not remove it altogether. The communal act of agreeing to a national policy of soft opt-out may itself be seen as altruistic; or, as the Mission and Public Affairs Division suggested, a “Christian concern for human solidarity”. Thank God, a substantial amount of altruism remains in Britain today, in this important area.

 

Canon Robin Gill is Emeritus Professor of Applied Theology at the University of Kent, and Editor of Theology.

To register to be a donor now, or to record a decision not to donate in advance of deemed consent in 2020, visit www.organdonation.nhs.uk.

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