In 2013 the National Assembly for Wales passed legislation concerning organ donation. Under that system, unless a person states a wish not to be a donor (opts out), their consent to donation will be deemed to have been given. Prime Minister Theresa May has now pledged to introduce presumed consent for organ donation in England.
Presumed consent for organ donation raises questions and concerns for Jewish communities and here, two of our rabbis reflect on the matter.
Rabbi Dr Jonathan Romain supports the system of presumed consent and Rabbi Sylvia Rothschild is opposed to it.
It is important to note that Reform Judaism and the Assembly of Rabbis and Cantors are fully in support of organ donation. It is a good thing; a generous thing and a mitzvah. To find out more about how you can register as a donor, visit the NHS organ donation website.
Rabbi Dr Jonathan Romain
The Welsh Assembly has decided to take a radical step in the way it handles organ donation. Until now, if someone passes away, and they have organs that might be of use to someone else – their heart, lungs, whatever – then they cannot be taken unless the deceased was carrying an organ donor’s card or the family gave consent.
The problem is that many people do not carry a donor’s card – not because they are against it, but because they do not know about the system or do know, but have not got round to getting one. And so either ignorance or inertia means that their organs are not available. There is also the fact that even if relatives give their permission, it can sometimes take several hours, if not a day or so, by which time the organs are no longer usable.
Amid all this, there is a shortage of organ donations, so people whose lives could be saved are dying and all for the want of someone not carrying a donor who would have said yes had they been asked. And so the Welsh Assembly had passed a law reversing the position, so that instead of it being that you cannot take an organ unless permission is specifically given, henceforth consent will be presumed and doctors will have the right to take an organ unless the person has requested in advance that this should not happen.
From a Jewish point of view, there are powerful arguments against this step. They range from a ban against making any cuts to a body to the issue of personal autonomy. However, there is the higher value of saving a person’s life and that trumps all the other considerations. It is not that the arguments against are wrong, but that when there are morally conflicting points , you have to build a hierarchy of values and saving life takes precedence.
There is also the fact that if you are in a situation where you may one day need a heart or lung from someone else, then you in turn have to be willing to provide your organs to others and that sense of mutual obligation has to be underpinned by the law presuming that if you are happy receive, you will also give.
I can also add a pastoral aspect: that I have seen a number of families lose someone in tragic circumstances but feel comforted by the knowledge that his/her organs were being used to save the life of someone else. It helped offset their grief and make them feel that their loss had at least resulted in life for another person. In one instance, there was a young man in the community who died suddenly and his organs were used for five separate people and it his parents coped much better because of it.
So as well as the total of 613 commandments, maybe we should add a 614th – that of organ donation – a unique mitzvah in that it’s the only we can do after our death.
Rabbi Sylvia Rothschild
Let me be clear. I support organ donation absolutely. The Jewish imperative derived from bible ‘Do not stand idly by the blood of your neighbour’ (Lev19:16) means that when we have the opportunity to save life we should do so. This is crystallised in the mitzvah of pikuach nefesh, the obligation to save life, and as such organ donation fits easily into the Jewish world view.
My objection is to the idea of presumed consent. As an ethicist I work with the three golden rules:
1. That any medical procedure should be therapeutic (or at least do no harm) to those subject to it;
2. That the person should be informed about (and understand) what is to happen, including any risks, and should consent explicitly to each procedure;
3. That such intervention must be predicated on good science – it should be expected to work.
Looking a little closer:
1. ‘Do no harm’
Clearly organ donation is not therapeutic for the donor, but it should still not disbenefit them. The idea of presumed consent disbenefitting the organ donor may at first seem fanciful, but in fact the State deciding that it has a right to the organs post mortem raises many issues of rights as to who owns one’s body, and the question of benefit emerges from this. We make choices about what happens to our bodies in life, for example about nutrition or procreation or medical interventions – yet the choices go if ownership could be removed after death. This becomes particularly problematic ethically if there is financial benefit to others from our transplanted organs – Would the State, the NHS, the transplant surgery team or the estate of the donor gain? This is not hypothetical – we already know of donated organs being used in private medicine in this country to the benefit of surgeon, hospital, and organ recipient.
2. ‘Explicit and informed consent’
The premise that we are responsible for and own our own bodies underpins the principle of the requirement to give informed consent for anything done to us. This is encapsulated in the phrase ‘no decision about me without me’. Rather as halachah requires us to keep a fence around the Torah, so too do medical ethics committees have to patrol this principle rigorously as it is often seen as a barrier to unfettered research. My own experience in this field over many years has shown me that while it may take time and resource to achieve informed consent, this is worth the time and effort, and the general public will almost always give consent to even quite intrusive research or procedures, but we want to be part of the process. The assumption that we do not need to be asked leads to a great many problems – Alder Hey or the recent usage of the Liverpool Care Pathway being classic examples of this, but there are many more. There are known limits to informed consent in medicine, but the obligation to explain and seek assent from the individual safeguards the autonomy and humanity of that person.
Presumed consent would arrogate to the State rights that are hard won, including our right to own and make decisions about our own bodies. In science, as in law, presumption is always a provisional state, where an action or a judgment can be reversed when more is known. As such the phrase when applied to organ donation is nonsense – the State could make an irreversible decision based on whether we actively opted out or not. As Reform Jews who are proud to say we are committed to personal educated choice, it seems strange that we would support a system so diametrically opposed to this ethos.
3.’Good science and effectiveness of the procedure’
The effectiveness of the ‘opt out’ system in organ donation is far from proved in every review so far of this practise – it may be a mechanism for a country to have a conversation about the need for more organs, but on its own it does not seem to much increase the number of organs available for transplant, while it changes an act of individual altruistic giving to a state harvesting of usable organs. It also raises real huge ethical concerns. To legislate in this way with no certainty of successfully increasing the number of donated organs is, to my mind, bizarre.
So what could we do?
We need more organ donors – that is clear. Demand far outstrips supply. But there are many other countries who have more donations than the UK, some with and some without presumed consent, and research does not ascribe this increased effectiveness to legal presumed consent, but rather to a well resourced system of identifying organ donors, of training coordinators in each hospital to work with the family to help them understand the powerful gift such a donation can be, and then to have systems in place to take advantage of the donations. The problem is not consent (in the UK we have similar consent rates to the US but these result in only half the donations being carried out). The problem is that we have not created and resourced the infrastructure so as to take advantage of all the willing donors there already are.
Organ donation is a sensitive process and requires skilled practitioners and procedures along the journey. Potential donors must be identified earlier than currently happens in the UK, potential matches made so that a family can perceive the real story of their giving such a gift. Coordinators need to be plentiful, well trained, fully available to the family for the whole period they need, and in the building of that trust relationship families feel more comfortable in offering organs on behalf of their loved ones. Investment in educating the populace and in repeatedly advertising the benefits of organ donation has been shown to dramatically increase consent both from the donor and from their families in the event of need. What we need is a population encouraged to see donation as something they are able and willing to do, and an infrastructure that enables the giving of that gift. Simply changing the law on consent and leaving the current under-resourced system to struggle on will change nothing
The ethical concerns raised by such legislation are huge and I do not believe that the argument that some more lives may be saved should prevent us from examining them or giving them weight. To go back to the golden rules of the ethics of medical interventions: they should be of benefit, properly consented, and based on good science.
Jewishly the ethics are also not quite so clear cut as some might suggest: Pikuach nefesh is a mitzvahcentral to our Judaism, and like all mitzvot for us to be obligated we must be alive. For us to fulfil themitzvah of pikuach nefesh, we should make the decision before we are in a position for it to be completed – we must fill out the card, add our name on the national register. It cannot be done on our behalf. As Reform Jews I hope that we would not only register our willingness to donate, but that we would encourage each other to do so, and also support distressed relatives asked to consent to organ donation, but we cannot dictate this measure, unlike more halachically bound streams of Judaism.
And finally for me the big one. I have received a number of blood transfusions in my life and each time I have been acutely aware of the effort that some unknown person has made to ensure that a fellow human being can benefit. This is not unusual – recipients of donations appreciate and value the gift that has been given to them, knowing that it marks a human act of care. Organ and tissue/blood donation is a gift that one human being makes to another. We do it because we believe in helping others, because we want something good to come out of our deaths, because we want to give something of ourselves to the world. All of this changes if the State arrogates to itself the rights of the dead body and harvests usable material for the benefit of the living. It ceases to be a gift or a donation and becomes instead a commodity with unclear ownership.
I carry a donor card and have done so for decades. To do so must be my decision – anything else takes away my dignity and my humanity.