Today I am very excited to welcome a new guest blogger to JvdLD. In this excellent article Martijn Stolze analyses the moral, ethical, and even legal issues surrounding organ donation in his native Netherlands, while I weigh in with some notes on the current law here in the UK. In the social contract of our modern Western society we have a golden rule, conveniently borrowed from the Christian belief system (or perhaps historical predecessors) which the Enlightened thinkers held in as high regard as freedom of speech or freedom to vote. This golden rule is of course ‘do unto others as you would be done by’, or as I like to call it, the ethic of reciprocity. In a recent discussion I had with the former Dutch Minister for Justice, Dr. Ernst Hirsch Ballin, I used my views on organ donation to equate with how we should treat freedom. In this article, I will expand on that matter, and also describe the other moral difficulties organ donations are fraught with.
Back to the discussion. The subject of the discussion was on the weekend of the 4th and 5th May, which in the Netherlands represents the weekend we celebrate our liberation from Nazi Germany and the war dead. Dr. Hirsch Ballin is giving a speech on the subject of freedom on the 5th May and wanted a small group of students to discuss with. At some point in the discussion I made an analogy of freedom with my personal views on donors. To me, donors should be the only people who should receive organ donations. In the freedom debate that meant: those who give freedom, earn it, but those who don’t, don’t. This is not controversial when it comes to freedom, but when it comes to donating organs, it is. People seem very self-righteous on this subject and very quick to appropriate donations as something they deserve. Especially when discussing this with people of a religious background or belief, which I have done a few times, the discussions get quite heated. Many Western religious subgroups prohibit people from donating their organs but conveniently have no rules on receiving organs when they are in need. The reason I put it as subgroups is that everyone interprets rules differently. The Catholic Church allows organ donation, but the majority of Dutch Catholics claim ‘religious beliefs’ as reason for not donating. The same goes even more so for Dutch Protestants, who are the largest groups of what I call ‘conscientious abstainers’ of donations in the country. Yet all these people would accept an organ if they needed one. That to me is unacceptable. Why are the rules so open for interpretation? Why do people who refuse to give their organs deserve to receive someone else’s? That is the point I am always trying to make, and people seem very incapable of finding a good reason. If the rule of reciprocity is a Christian rule first, why not apply it consistently? And why, if our entire society is based on principles like that (leading to a justice system and a welfare state, per example) then why not extend it that far? In the Netherlands, the progressive parties have often tried to address this issue, but suggesting that only people who carry donor cards receiver organ donations, and even allowing certain provisions so religious subgroups felt more comfortable with it. Sadly the biggest party in the nation has a large Christian following, so as always, political pandering got in the way of actual good policy making, and these initiatives ended dead in the water. Alternatives have been mooted too. One plan I wholly supported, indeed even petitioned, was to make every single person in the nation a donor by virtue of having a passport, and only those who wanted to abstain (and give a reason) would be allowed to, and perhaps have to pay a small fine to do so. This is an excellent initiative for it takes away the element of ignorance and apathy from people who would normally perhaps not really care, so why waste the energy signing up. These people presume they will get someone else’s organs anyway. As the brother of two doctors I know just a little bit about the protocols and rules of organ donations and considering how much effort goes into it all, I am staggered at the lack of appreciation people have for the nuances of the system. This lack of participation in society is very annoying but would be automatically reversed with the aforementioned initiative. Even when people have donor cards, the moral difficulties are almost Kantian. A recipient must be absolutely certain of survival after the transplant, so very few pre-existing conditions are allowed. Smoking, drinking and most forms of obesity are also big obstacles. So are mental health issues. Anyone who has seen the episodes on organ transplants in shows such as House or Scrubs will know (in an albeit simplified and dramatised way) what I mean. What I mean by Kantian is that the purity of intention is highly important. The person giving away an organ, or worse, a family deciding upon it, must have absolute faith this ends up in the right hands. These guidelines are there not just for medical reasons, but, like so many things in medicine, are highly linked with ethics, and that recurring ethic of reciprocity. As is always the case, the intricacies of a society are difficult to dissect. The simple rules which make up our social contract, some thousands of years old, are completely unimportant to some people, or worse, people seem oblivious to them. Thousands of lives are saved each year by organ transplants yet people seem to take it all for granted. In a society where we all take care of each other, the lack of appreciation of those same principles in different fields can be very hard to fathom. When it comes to organ donation, there are too many misconceptions. Religious groups should check again with their governing organs (no pun intended) and find out what these actually say about donating. Governments should make it more difficult for people to abstain out of laziness or ignorance. And as a society we should consider it the same form of privilege that we consider democracy or freedom: the ethic of reciprocity. To me that means that only those who want to donate, deserve to receive. To you, that might mean something completely different. By Martijn Stolze Copyright © 2013
Organ Donation Law in the UK
In the UK, the law regarding the removal of organs from people after their death is set out in the Human Tissue Act 2004, covering England, Wales and Northern Ireland, and the Human Tissue (Scotland) Act 2006. These laws repealed the previous Human Tissue Act 1961, which was introduced when the science of transplantation was just in its infancy in the UK. The new legislation takes a modern approach to the issues and was widely consulted on. The Department of Health consultation document entitled Human bodies, human choices was published in July 2002 followed by a summary of responses to the consultation in April 2003. The two Human Tissue Acts that are now in force state that if a person has, while alive and competent, given consent for some or all of their organs or tissue to be donated following his or her death, then that consent is sufficient for the donation to go ahead. Once consent is established, relatives or other relevant people should be advised of the fact and encouraged to respect the deceased’s wishes. Relatives are to be advised that they have no legal right to veto or overrule them. However, if there is no record of the deceased’s wishes, the medical staff will approach the relatives or other relevant people to establish any known wishes of the deceased. If these are not known, and the deceased has nominated a person to deal with the use of their body after death, then consent can be given by that person instead. In instances where neither of the above scenarios apply, consent to donate can be given by someone in a “qualifying relationship” immediately before the death of the deceased person. Those in qualifying relationships differ slightly for Scotland but both lists, which are set out in a strict order of priority, include family members and close friends. The current “opt-in” system of organ donation that we have in the UK has been the subject of debate for many years. Due to the serious shortage of organ donors and consequent waiting lists for transplant operations in the UK, it is often suggested that the altruistic approach to organ donation is in need of review, as Martijn suggests in his article above and in relation to the current situation in the Netherlands. There are many keen to see the UK adopt a system of “presumed consent” including the British Medical Association (BMA), many transplant surgeons, and some patients’ groups and politicians. In July 2007, the Chief Medical Officer produced his Annual Report on the State of Public Health, where he supported the idea of an opt-out system with proper safeguards and good public information. The then Prime Minister, Gordon Brown, also called for a public debate on the issue of presumed consent. So in recognition of the complex issues and widely differing viewpoints surrounding systems of consent to organ donation, the then UK Secretary of State for Health and Labour MP, Alan Johnson, asked the Organ Donation Taskforce to assess the possible impact of a change to presumed consent and the acceptability of such a change in the UK. The resulting report The potential impact of an opt-out system for organ donation in the UK was delivered in November 2008. It recommended that the current system of opt-in be retained and that the recommendations of the Taskforce’s earlier report Organs for Transplants, produced in January 2008, be implemented. The first report examined the barriers to donation and made recommendations for improvements within existing legal frameworks. The UK decided to instead rely on a £4.5m public awareness campaign to boost voluntary donor numbers. At the time of the 2008 report there were more than 8,000 people waiting for organ transplants in the UK, a figure which rises by approximately 8% a year. Approximately 3,000 operations are carried out each year, during which time, 1,000 people in the UK die after waiting for a transplant. Most of the countries with the highest rates of registered donors have an opt-out system as can be seen below.
Plans to change the rules on organ donation have recently moved a step closer following the publication of a Bill to create the UK’s first opt-out system. The Welsh Government says the Human Transplantation (Wales) Bill, which it hopes will become law by the summer, will increase organs available for transplant by a quarter. If passed by the Welsh assembly it could come into force by 2015. However, the plans now face opposition from within the Jewish and Muslim communities.
Dr Sajad Ahmad, a GP from Cardiff, who was one of those who petitioned against the bill, said: “I personally feel this is being rushed in without due consideration and discussion. To presume that a person’s liver is yours after they have died – that’s wrong.”
Stanley Soffa, chairman of the South Wales Jewish Representative Council, said: “We believe that people should be able, or the family of the deceased should be able, to agree to organs being taken as a gift as a donation. I would have preferred there not have been a bill.” Organ donation will always be a contentious issue legally, morally, ethically and spiritually. Even if opt-out legislation was brought in to help those with urgent need of medical care there would be many in society who might view the law with apprehension and indeed suspicion. This doctor is telling me that he cannot do anything more for my loved one, but is he just saying that so he can take their organs? is a hypothetical that I hear quite often when discussing the subject with others. There is no doubt that any change in the law must be managed with the utmost care and governments must continue to try and educate the public through awareness campaigns if any change in attitudes and results are to be successful. By John van der Luit-Drummond Copyright © 2013 Disclaimer: The views expressed are those of the writer(s) and may not reflect the views of JvdLD. This article does not constitute legal advice. In relation to posts by a guest Author(s), these are made by them through their own practical experience or knowledge of the subject in question or as a matter of their own opinions. Opinion posts expressed by the Author(s) or by readers of the blog on the site’s comment section are those of the individuals in question and do not necessarily represent the views and opinions of John van der Luit-Drummond or JvdLD. The copyright of the individual Authors who guest post on this blog are theirs alone and John van der Luit-Drummond lays no claim to their intellectual property other than to be allowed through mutual agreement to display their posts/articles on this blog and share via social media such as sites as (although not limited to) Facebook, Twitter, or LinkedIn.