Presumed consent for vital organ donation – a good or bad thing? 

Did you know that in the middle of the confusion surrounding the Covid 19 outbreak the Governments of the UK and Gibraltar have removed your right to decide what happens to your body after your death, and that this could even have an impact on the diagnosis of your death itself when the time comes?

What is this change? Until now we all had the right to decide what happens to our bodies during our lives, and following our deaths. Such details as where we wish to be buried, what happens to our bodies after death, whether or not we wish to donate our organs to others, remained in our hands. Following the change, the Government now has the right to decide if our organs are to be donated to others, if our funerals are to be delayed so that our organs can be preserved. Our bodies after the diagnosis of death are no longer ours, they are theirs. Our consent to donate our organs, or the organs of our loved ones, is now “assumed”, signifying that we no longer have a say in the matter.

This of course is a very laudable aim, one which most, if not all of us, would immediately applaud. Many of us would be very happy to donate our organs to those who need them. The gift of passing on life to another is a great gift that demonstrates our love of neighbour. After all, Christ himself offered up his body to open the gates of heaven to us all. The Church is clear on this, teaching us that “the free gift of organs after death is legitimate and can be meritorious.” Catechism of the Catholic Church, 2301.

This message is also the one being put to us by our Governments. It seems a very simple step for them to have taken. But why then does the Catechism say “can be meritorious”? Surely it must be so? Unfortunately, it is not that simple, so let us take a look at what we are not being told.

The problems: 

1 Is there any evidence that supports the claim that the number of vital organs for transplantation will increase by the introduction of assumed consent?

The truth is that such evidence does not exist. A UK wide Organ Donation Taskforce was set up by the Westminster Government to investigate just this, and I served on that body. We concluded that it was not possible to attribute any increase in the availability of vital organs to the introduction of assumed consent. Some countries that had passed such a law, such as Spain, Austria and Belgium, did have high organ donation rates, whilst others such as Bulgaria and Luxemburg had among the lowest levels of all nations. In fact, the statistics demonstrated that in some countries the donor organ availability levels actually decreased following the adoption of assumed consent! The taskforce found that significant improvements in organ donation rates could be achieved by improvements in infrastructure, education, and by public awareness campaigns, rather than any changes in the law. 

2 Is “assumed consent” ethically and legally acceptable?

Consent for a medical procedure is only ethically and legally valid if it:

1. Is informed with all information having been provided in a format that is understandable by the individual.

2. Clearly states what is being consented to.

3. Clearly states the reasons for the proposed process.

4. Is given via a positive act (for example an electronic tick-box or a signature on a form).

5. Is given by a person who has the capacity to make such a decision.

In the past we have all enjoyed the right to consent to our vital organs being taken following our deaths, but no more. Our rights to make up our own minds, to consent or not to be a donor, to be provided with all the information that we need in order to make an informed decision, have all been taken away from us. 

We should not take this lightly as it represents a precedent for other personal rights to be taken over by the state. Pope John Paul II spoke out on the importance of this very issue in 2000: 

The human ‘authenticity’ of such a decisive gesture (donating a vital organ) requires that individuals be properly informed about the processes involved, in order to be in a position to consent or decline in a free and conscientious manner. The consent of relatives has its own ethical validity in the absence of a decision on the part of the donor. Both Catholic and Secular Ethics are in broad agreement as to the essential nature of donor consent, and the acceptability of next-of-kin consent. However, due to the shortage of donor organs there are worrying pressures being exerted for some freedom to take organs from donors without consent. (Pope Saint John Paul II 2000).

So, is it correct to use the term “assumed consent”? How can it be, when clearly no consent has been given? The right to consent has been taken from us, without many of us knowing anything about it. This leaves us with the question: is the Government’s removal from us of our right to consent to this major surgical procedure ethically and legally acceptable?

3 Are there any risks to each of us posed by the introduction of this legislation?

Unfortunately for us, there are some fairly serious risks attached to this change in legislation. 

In order for our vital organs to be deemed suitable for transplantation they must be removed in optimum condition, This requires that they either be removed immediately following our death, or that life support machinery is used following our death to keep the organs in excellent condition until they are able to be removed. All this seems pretty sensible and acceptable, until we consider how death is diagnosed. 

As death needs to be diagnosed as soon as possible after it occurs a new definition was introduced back in the 1960’s, called Brain Death. As the definition states, this occurs when there exists a “total irreversible cessation of all brain activity”, or in Britain “of all activity in the Brain Stem.” To most of us this would seem quite reasonable. However, take a moment to think about it. How can medical science ever demonstrate irreversibility, especially when someone’s body is on life support, appears to be breathing, is warm to the touch, and has good normal colouring? No matter how medical science progresses, and it does at an amazing rate, it is always open to revision as we come to know and understand more about our human bodies. Unfortunately modern history is full of cases of the misdiagnosis of Brain Death, despite the best efforts of our physicians as they correctly follow the procedures set out for them. 

The truth is that no matter what diagnostic criteria are used, Brain Death must always be declared without “irreversibility” being proved, thus rendering the diagnosis of death morally uncertain. It simply is not possible to know with absolute certainty that the individual has died, because in order to retrieve vital organs for transplantation the medical profession cannot wait for the traditional signs of death that do prove that death has occurred. 

This then is the problem we all face: we all wish to use our vital organs for the benefit of others if this is possible after our death, but the Government have just taken away from us our right to look at all the available information and decide for ourselves if, despite the possible risk of a misdiagnosis, we still wish to donate our vital organs on our death. To do so would then be morally acceptable, as the conditions for valid consent as set out earlier would be fulfilled.

This is why the Catholic Catechism says that: “the free gift of organs after death is legitimate and can be meritorious.” 

4 In light of the above should we simply accept this step by the Government unchallenged?

The dignity that belongs to every human life demands that their autonomous right to self-determination be respected. God in His wisdom grants us all the gift of free will, and this gift must be respected as it is part of the very essence of being human. In our context of assumed consent, it is clear that freely given validly informed consent must be given for whatever medical treatment or procedure is to be carried out on our human bodies, whether before or after death.

As the UK Supreme Court ruled in 2015: “Doctors must take reasonable care to ensure that the patient is aware of any material risks involved in any treatment/intervention, and of any reasonable alternative”.

tinyurl.com/UTR-organ-consent

Following the removal of our right to consent to vital organ donation, can we say that we’ve been afforded the rights that the Supreme Court identifies above? If not, what action do you believe we should take?

You must decide.