by Georgia Clarke

A month ago, the system for organ donation changed from ‘opt-in’ to ‘deemed consent’, otherwise known as ‘opt-out’. The Catholic Church is a huge supporter in principle of organ donation, but this move has caused concern. Georgia Clarke, who is currently studying a MA in Medical Ethics and Law, explores why there is cause for this unease and suggests what we can all do to combat any abuse of what ought to be one of the greatest gifts, meaning literally, a generous donation.

Until May 20th 2020, the law in force in England regarding organ donation was termed ‘opt-in’ which meant that those who were willing to become organ donors after they died actively stated their consent and were then added to the organ donor register. When I passed my driving test, I was asked whether I’d be willing to become an organ donor. While I found it quite an alarming thought, still a teen at the time, I eventually appreciated the opportunity to declare my decision. The thought process behind how I made my decision went along these lines; “Would I be willing to give my organs to someone in order to save/improve their life after I have died? Well, as long as Catholic teaching allows it, absolutely I’d be happy to”. I didn’t do any further research other than a google search into “Are Catholics pro organ donation?” and I found a couple of things in the affirmative. So, I signed the form, received the little card in the post, and thought little more of it if I’m honest. I probably have mentioned it a couple of times to my family and friends, but not to the extent that they’d necessarily know what my exact wishes were if asked. 

 

My guess is that the majority of the population are similar to me with regards to this decision. They wouldn’t have thought all that much about it unless confronted with an opportunity to make a decision. My second guess is that, as with a lot of things that you agree with in principle, it often doesn’t get to the top of one’s ‘to-do’ list and it gets left for another day (and another day). It’s said that 80% of people in England support organ donation, but only 38% of people have opted in to be organ donors[1]. However, at least one person dies every single day who is on the waiting list for an organ[2]. There are currently 6,000 people on that waiting list in the UK[3]. Imagine if it were you or a loved one were on that waiting list. That there were organs suitable, but the individuals hadn’t actively consented and recorded their decision. Perhaps many would have been happy to donate, but their consent was not registered or spoken about with family and, therefore, their organs could not be used for transplant. 

 

No doubt you can understand the problems with the opt-in system. It is estimated that the opt-out system will save 700 lives a year[4], though this is a pretty rough estimate and we will have to wait and see the numbers in the future to verify this. I have to argue here though, that the solution to the problems with the opt-in system are not simply to switch to opt-out. There are aspects and consequences of having an opt-out system that should seriously trouble us. This blog will highlight the main concern with the opt-out system and highlight three things Catholics should note about organ donation.  Finally, in light of the fact the law is now opt-out, I will suggest some things we should all be doing to ensure organ donation does not become merely organ acquisition, by proactively combatting any abuse of the donation system that might ensue. 

 

 

The Opt-Out System

 

In the summer of 2017, 9-year-old Keira Ball unfortunately died in a terrible car accident. You can read more about her here, a charity run by her family. When asked about organ donation, her parents considered the type of child she was, whether she would have wanted it and whether they also wanted it. They agreed for Keira to be an organ donor and through her donation Keira helped four people. Her kidneys were donated to adults, her liver to a baby, and her heart was transplanted to another 9-year old called Max Johnson who had been on the waiting list for 8 months. Max and his family campaigned for a change in the law, in favour of an opt-out system. In 2018, the government announced that what was commonly referred to as ‘Max’s Law’ would be coming into effect. The Bill was given royal assent on 15th March 2019, though Max wanted Keira’s name added. So, on the 20th March 2020 ‘Max and Keira’s Law’ was enacted in England. 

 

What does the law say? The Organ Donation (Deemed Consent) Act 2019 amended the Human Tissue Act 2004.  It essentially means that if you have neither opted-in nor have opted-out, you are deemed to have given consent to be an organ donor when you die. The excluded groups are those under 18; those ordinarily resident in England for less than 12 months before their death; or those who lacked mental capacity to understand deemed consent for a significant period before their death. This follows the introduction in Wales of the Human Transplantation (Wales) Act 2013 that introduced deemed consent for deceased donors in 2015. 

 

The consent of the donor is said in the Code of Practice to be ‘paramount’[5]. The Deemed Consent Act does not specify how a person must record their decision[6]. This means that you can register your decision on the Organ Donor Register (which will be checked in every case of a potential donor and communicated to the family), by telling a friend or family member, or by recording it in writing. A specialist nurse will consult your family or those involved in your care regarding your wishes to establish what you would have wanted regarding organ donation. Section 91 of the Code of Practice states, “In a situation where consent could be deemed but there is no family to speak with to establish the individual’s last known decision, donation should not proceed”.[7] I would highly recommend that everyone read the changes made to the Code of Practice.

 

 

Main Concern: Valid Consent

 

The Code of Practice attempts to ensure that in every case the wishes of the individual are taken into consideration. A specialist nurse will consult the family or those involved in the care of the individual to determine what the patient’s views were with regards to organ donation. I hope that in reality this is practicable. However, the law could now be opening the doors to allow donation where express consent has not been obtained. Say, if the family guess the patient would have been in favour of donation, but it was not in reality the case. In my opinion, it is not desirable to allow others to donate your organs without your express consent or knowledge. This is no longer a donation. Instead, it is others acquiring something from you, even if it is after you have died. Therefore, it is imperative that everyone is informed and given the opportunity to record their decision. The other unfortunate consequence of the opt-out system is the potential feeling of guilt for having to go and actively opt-out of being a donor. The law is said to be ‘neutral’ on the matter of organ donation, but I don’t think that is the case with the opt-out system. Everyone should feel empowered to make a decision that is right for them and their beliefs. Only then is consent truly valid consent. 

 

Three Things to Note as a Catholic Regarding Organ Donation

 

What does the Church say?

 

The Catechism of the Catholic Church states that, ‘Organ donation after death is a noble and meritorious act and is to be encouraged as an expression of generous solidarity’ (2296). Pope John Paull II, in his Address to the 18th International Congress of the Transplantation Society (2000) said, “...There is a need to instil in people's hearts, especially in the hearts of the young, a genuine and deep appreciation of the need for brotherly love, a love that can find expression in the decision to become an organ donor.” Thus, in principle, the Catholic Church is highly supportive of people freely giving consent to become organ donors. 

 

What is encouraging is how pages 57-59 of the Code of Practice deal with ‘Taking Account of the Potential Donor’s Faith and/or Beliefs’, that when recording your decision on the NHS Organ Donor Register you can tick a box that says “I would like NHS staff to speak to my family and anyone else appropriate about how organ donation can go ahead in line with my faith or beliefs”, and you can even get a ‘faith donor card’ on the NHS Blood and Transplant website.  

 

The way death is defined in hospitals in England is, for some, grounds for opting-out. Many times, the way death is defined is by using neurological criteria (see the next section). Pope John Paul II said in his address in 2000, “the criterion adopted in more recent times for ascertaining the fact of death, namely the complete and irreversible cessation of all brain activity, if rigorously applied, does not seem to conflict with the essential elements of a sound anthropology”. It is, of course, the rigorous application of this definition that is up for debate in England, which is seen to have a less rigorous definition of death. 

 

Definition of Death:

 

In the UK, there are two types of organ donation after death which are undertaken. Firstly, there is donation that takes place after a death which is confirmed using neurological criteria, commonly known as ‘Donation after Brainstem Death’. The second type is donation which takes place after a death which is diagnosed and confirmed using circulatory criteria (commonly known as ‘Donation after Circulatory Death’). 

 

John Paul II defined death as, ‘a single event, consisting in the total disintegration of that unitary and integrated whole that is the personal self. It results from the separation of the life-principle (or soul) from the corporal reality of the person’.[8] This means that we should understand death as occurring when the body as a unity has disintegrated, where its parts are no longer maintaining a unified human organism. In the UK, the Academy of Medical Royal Colleges[9] has provided a definition of death as, ‘the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe’. The Anscombe Bioethics Centre rightly points out that other functions of the brain, apart from these two specific ones, could mean the body is still integrated as a dynamic whole. I highly recommend a reading of the Anscombe Centre’s report on the ethics of organ transplantation, which can be found here.

 

Different Organs & A Point System

 

When I have been talking about this with different friends and family members, some have worried that you not cannot explicitly state which organs you are happy to donate. It does not matter about a person’s reasoning, some people just don’t feel comfortable donating their heart for example. They can be reassured that it is absolutely possible to record your decision to donate only some of your organs/tissue on the form to join the NHS Organ Donor Register.

 Also not all material is accepted for donation. For the list of materials which are not included visit this link, and to find out more about what you can donate, more information is available here.

 

I recently attended a lecture on organ donation at King’s College London by a representative of Guy’s and St Thomas’ NHS Foundation Trust. It was highly informative and set out the landscape of deceased organ donation incredibly well. In the discussion that followed the lecture, fellow students were wondering if it would ever be possible or desirable to introduce a ‘points system’ regarding donation. If you have opted-out of being a donor, should you have fewer points, and so be less eligible to receive an organ should you need one? If you have opted to specify which organs you would be happy to donate, should that mean you are not eligible to receive those organs you would not yourself donate? Of course, this was all theory and ‘what ifs’, but the discussion alone gave me a lot to consider. One would hope that would never be the case, but it seemed to be a natural consideration based on the opt-out system.

 

Another way?

 

I would personally advocate for neither opt-in nor opt-out but a ‘mandated choice’ system. I can appreciate that, in many ways, this is what the government have been trying to achieve through the move to deemed consent, but I do not believe that it achieves entirely what organ donation should be about. Instead, mandated choice would mean that everyone had to make a decision while alive to either become a donor or not. Just as I was asked when I passed my driving test, it could be a question whenever you register at a GP surgery or when you register to vote. It should be a question that is asked frequently throughout one’s life and we should be educated on it thoroughly from a young age. A significant concern of mine has been the lack of communication about the change in the law. The first time I heard about it, outside of university, was an Instagram post that the law had changed. Many friends of mine have looked at me in disbelief that they are now deemed to have consented to being organ donors. We have received no communication through the post, email, by our local GP or MP. This is not good enough. 

 

In order to ensure more people are willing to become donors, and actively state their decision, more education is desperately needed by the public both of the law and of the medical practice of transplantation. 

 

So, what to do?

 

I hope it’s clear from this piece that organ donation is something I support, and I believe can be a force for such good in our society. I also believe strongly that people should be informed and actively state their decision, free from outside pressures and by whatever means they feel comfortable doing so, to ensure that any organ transplant is a generous donation by the individual. Please take the time to educate yourself, your family, and your friends. Debate and discuss it frequently. Most importantly, talk about what you would want in the event you became a potential donor. I recommend recording your decision on the donor register either by registering to become a donor here, or by opting-out here. Know you can amend your decision at any time. 

Only by being proactive and educating ourselves and our loved ones can we continue to uphold a practice that is life-giving and meritorious namely because it is truly pure gift. 

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[1] https://www.gov.uk/government/news/opt-out-organ-donation-max-and-keira-s-bill-passed-into-law <Accessed 28.05.2020>

[2] https://www.nhsbt.nhs.uk/what-we-do/transplantation-services/organ-donation-and-transplantation/

[3] See n1

[4] Ibid

[5] Code of Practice F: Part Two, Section 63

[6] Ibid, Section 76

[7] https://www.hta.gov.uk/sites/default/files/11981%20Revised%20CODE%20F%20v0_1.pdf Section 91, p57

[8] Address to18th International Congress of the Transplantation Society 29 August 2000, §4. 

[9] https://www.aomrc.org.uk/wp-content/uploads/2016/04/Code_Practice_Confirmation_Diagnosis_Death_1008-4.pdf