To opt-in or opt-out; that is the question:

The Prime Minister, Gordon Brown, called for a national debate on what is called ‘Presumed Consent’ as part of the reform programme to improve the number of transplant procedures carried out in the UK. He made his announcement in the Sunday Telegraph on January 13th, 2008. (Picture by Rix - Daily Mirror)

The consent process for living donation is a separate issue to the current opt-in, explicit consent system used through the Organ Donation Register. To become a living donor an individual has to go through a process significantly more demanding than signing a registration leaflet or signing up on the UK Transplant website. The contrast in approach is very revealing. People who are encouraged to place their consent wishes on the Organ Donation Register are given very little detailed information about how their organs would be retrieved and transplanted. In contrast the assessment procedure to become a living organ donor is very thorough, detailed and intentionally protracted. This educational process leads to INFORMED and explicit consent. The Organ Donor Register merely requires a signature on a leaflet. The donor is giving consent to the NHS to retrieve or procure tissue or organs for transplant purposes when they are diagnosed as dead. The diagnosis of death is either cardio- respiratory or brain stem dead. The request of the deased donor may or may not be granted depending on the circumstances of the death. Although the Human Tissue Act of 2004 states that the donor's wishes must be honoured wherever possible, in practise the family members of the deceased can overrule the wishes of the registered donor. The family in effect has the final say as to whether surgeons can remove viable organs to save the lives of other people. This approach is known as the SOFT OPTION - allowing the family the final say regardless of dead person's wishes. In Austria the registered donor's wishes are paramount and cannot be overruled by the family. This is known as the as the HARD OPTION. Austria also has an opt-out consent system for organ donation. These two factors are used as reasons to explain why Austria achieves a much higher organ retrieval rate than we do in the UK. But there are other significant factors at play.

The focus in this part of the website is to examine whether an opt-out system is likely to support the transplant process more effectively than the opt-in system currently used. Would presumed consent deliver more donors and more transplants? Other types of reforms are ignored at this stage and considered elsewhere.

To give you a flavour of what public opinion thinks about the subject I've added links to various newspaper articles and blogs where the 'presumed consent' issue has been discussed. These links are then followed by a simplified table of opposing views that are developed further at a later stage.

Media views on the issue

Here's two opposing blog comments taken from the Daily Telegraph. Many diverse views can be found on the subject - you can lose a life trawling through them all!

A supportive comment for presumed consent from ‘Andy R’:

"I tend to think that people are creating a rather farfetched idea of how organ donorship is carried out. The suggestion that surgeons hang around a terminally ill patient waiting for the moment is ludicrous. Those who feel so strongly against the opt-out system must remember they can still do so, and encourage loved ones to join them. I personally believe that if all people are given the information on how to opt out if they so desire, the system is a feasible way of increasing organ donorship, resulting in an increased quality of life for patients across the country. Those opposing the opt out system must put themselves in the position of someone in desperate need of a donor, and imagine how they would feel if they knew there was a suitable donor out there, who would be prepared to give their unused organs, but had not 'got round to it' in the current system. Imagine trying to explain to them how the opt-out system is wrong."

And now an opposing comment from ‘John Bull’:

"Despite the pettiness of many 'Opt-Out' proponents whose 'holier than thou' posturing exposes them for the ridiculously pathetic short-sighted idiots they really are, it seems that even they share some concerns at the immoral pronouncements of our dictatorial politicians. The base question here is "Do we totally trust anyone involved in the running of our present NHS and government to openly and honestly carry out our individual wishes at a time when we no longer have the power to personally defend our decisions ?" I suggest that if you seriously answer 'Yes', then you are placing yourself and others at enormous risk, and doubt your sanity. Having been a blood donor and donor-card carrier all my life (until I was judged too old to be of value) I believe that I have stood and been counted on this issue already - but - for anyone - politician or transplant activist - to decree that everyone MUST be considered to consent unless they specifically jump through the hoops to opt-out, is such an appalling imposition, clearly indicating their derision of human rights, that I feel accepting these dishonest proposals would be tantamount to voting for human vivisection - even though the 'vivi' would only apply until the 'section' had been removed!"

(Just for the record 'John Bull' (comment above) you are never too old to be a donor of blood or certain tissue types - the oldest cornea donor was 103 and the Blood Service has now got rid of the upper age limit for blood donation provided you are an existing registered blood donor.)

You can examine the 695 blog comments to the Daily Telegraph article for yourself. There are some very extreme views about the nature of consent, the powers of the government and the NHS, as well as some bizarre thoughts about the transplant process generally. [Daily Telegraph web link]

In true democratic spirit and to show no form of bias here are web links to other newspapers and their articles on presumed consent. Any web search engine will take you to hundreds of discussions on this topic. There are several states in the USA which have experimented with this method of consent and most European countries already employ this system.

[The Guardian web link]	[The Observer web link]	[The Daily Mirror web link]
[The Sun web link]	[The Daily Mail web link]	[The Los Angeles Times web link]
[The Times web link]	[The Independent web link]
[The Daily Express web link]	[The New York Times web link]

In Austria presumed consent is operated on a ‘hard’ basis. This means that if surgeons want to retrieve organs from a deceased registered donor the bereaved family CANNOT overrule the donor’s wishes. In Spain a ‘soft’ option is used which allows close family members to object to organ procurement.

Some of the arguments

	Reasons for Presumed Consent or Opt-out	Reasons for keeping the Opt-in approach
1.	All the discussion surrounding the possible introduction of presumed consent has stimulated huge interest in the public’s imagination. Large numbers of people signed onto the organ donor register following the Prime Minister’s backing for this scheme in his Sunday Telegraph interview in January 2008.	More people join the Organ Donor Register whenever the issue of transplantation is exposed to media attention in a vaguely positive light. Other alternatives to consent procedures such as Mandated Choice or Conditional Consent would also stimulate more donor involvement and interest.
2.	Presumed consent gives everyone the opportunity to exclude themselves from the donor process if they want to. Provided safeguards are in place to protect the young and individuals that lack the mental capacity to decide for themselves the opt-out system is very straight forward.	The opt-in system requires each individual to be proactive. We have to give explicit consent that leaves no room for doubt or uncertainty about our wishes. Signing the Organ Donor Register is not a binding legal contract but it is a voluntary statement of intent to be a potential donor when the person dies.
3.	Organ donation requires people to consider their own mortality. This is very difficult for everyone, but particularly young people. By having presumed consent as the default position burden of thinking about your death is taken off the individual leaving them so get on with their life.	The voluntaristic act of opting-in allows unfettered personal choice that is compatible with most of the ideals of a liberal democracy. Individual choice prevails over social need. The individual has expressly given informed consent for organ retrieval to take place.
4.	According to social surveys in the UK between 70-90% of the UK population support organ donation. Yet only 26% are currently signed on the Organ Donor Register (March 2009). If so many people are in favour of organ donation then presumed consent would more accurately reflect the wishes of the people. This in turn would provide more donors leading to more transplants. Potentially anyone that dies in a hospital location could be a donor which amounts to around 400,000 people a year.	UK Transplant data shows that 4 out of 10 families refuse the request for organ donation when a family member dies. Donors that have explicitly made their wishes clear can still have their right to be a donor over ruled by their family even when the family has discussed the subject amongst themselves. A switch to presumed consent would reduce the need for family discussion even further, because everyone would be assumed to be a donor. Explicit consent stimulates negotiation between family members on the donor issue. Presumed consent takes away the need for any discussion.
5.	Donor Transplant Coordinators or Intensivists have the job of asking families for permission to remove organs or tissue from a deceased family member. Their job will be made more straight forward if the assumption is clearly understood that everyone is a potential donor. Everyone will be expecting the question to be asked and it will not come as a shock.	In the UK the request for organ donation is done on a ‘soft’ basis. This means that families can decline the request regardless of the dead person’s wishes. In Austria they have a ‘hard’ option where the family cannot over rule the donor’s wishes. Whatever method of consent is applied family refusal at a time of terrible loss & grief will not alter the challenge facing coordinators or intensivists.
6.	UK law on who has the legal authority over the dead body is very vague. A move to presumed consent would clarify this position because the deceased person would become the full responsibility of the state. This would be no different to the current situation when a coroner organises a post mortem.	The state is often criticised for taking on excessive collective rights over individual rights. Complaints about the ‘Nanny State’ can be counterproductive. State control over the deceased body will be a step too far for many individuals who would regard presumed consent as an attack on their human rights even though they have the opportunity to opt-out.
7.	Some people feel guilty that they cannot come to terms with the civic responsibility of being a donor. They are sympathetic to the idea, but they feel they might be ‘tempting fate’ by signing the Organ Donor Register. Presumed consent would free people from this problem because the decision would be taken out of their hands.	Explicit consent using the opt-in system means that an individual has to take responsibility for their actions. Individual autonomy is safe guarded by the opt-in system. This approach encourages careful thought about civic and moral obligation – it develops a sense of citizenship and community in a manner in which presumed consent does not.
8.	Modern lifestyles do not make a commitment to organ donation easy. It takes time to discuss, organise and think through. Indifference, apathy, laziness and hectic lives are all barriers to organ donation that would be removed by introducing presumed consent.	No other medical relationship is based on a presumption. When a doctor or nurse treats a patient all consent has to be given in an informed or explicit way by the patient. If the patient is mentally incapable of doing this then designated legal authority is given to a ‘significant other’ to make the decision for them. Why should informed consent be removed at the point of death? The idea does not conform to UK cultural values. Trust is only achieved through informed consent - not the presumption of consent.
9.	Faith groups can find certain factions within their community opposed to organ donation even though the majority of the religious group are in favour of it. All national faith groups 'officially' support organ donation in the UK. A presumed consent system would help faith groups get around their divisions and enable them to be more active in encouraging their members to be donors.	When Singapore introduced a system of presumed consent their legislation protected Muslim groups from the process. This could be regarded as socially divisive and inflammatory in the UK. The opt-in approach to donation does not highlight ethnic, cultural or religious differences because the ultimate decision to be a donor remains a personal decision – an act of individual choice.
10.	By making presumed consent or the opt-out system apply in the UK many more potential donors will become available to enable surgeons to carry out life saving operations. Already committed donors have nothing to fear. In addition people who are too busy, lazy or apathetic will be drawn into the donor pool to the benefit of society as a whole without having to do a thing.	The evidence that presumed consent leads to more transplants is inconclusive. When different countries have moved to an opt-out system this change has been accompanied by other changes to their transplant programme. This makes it very difficult to isolate the impact of just introducing presumed consent. There is no disputing that some countries with presumed consent have increased the frequency of organ retrieval e.g. Austria. In Spain their increase was not achieved when presumed consent was introduced in 1979, but when other extensive reforms to the transplant process were carried out ten years later.
11.	What can be lost by moving to presumed consent? If the change was introduced and it didn’t achieve the desired outcome of more donors & transplants it could always be reversed.	Without the empirical or statistical proof that opt-out schemes increase donor rates the conservative nature of British culture should perhaps keep with the status quo. A politically inspired move towards presumed consent could backfire. The public’s response could become a statement of their views on the government introducing the legislative change rather than an informed consideration of the merits of the proposals. An unsuccessful or premature change away from the opt-in system could seriously damage the transplant process.
12.	Presumed consent provides the opportunity for all citizens to opt-out if they do not regard donation as a social responsibility whether it is viewed as a gift or as an obligation.	There is a tradition in Britain that regards donation of blood, tissue and organs as a gift. Key groups such as the Donor Family Network and BODY believe it is vital to retain the gift concept. They argue that can only be achieved through a voluntary opt-in system based on altruism – compassion not compulsion. These groups are organisations that have family members that were deceased donors. They have actually lived through the circumstances of a loved one dying and then agreeing to organ donation. Donation is literally a gift to be given - not to be taken without any regard to the family's wishes.
13.	The state always gets what it wants. Look at the smoking ban in public, wearing seats belts and crash helmets, the classification of recreational drugs. Many people that become donors are not on the Organ Donor Register anyway. Their families give the consent. So we might as well have presumed consent. Our organs will be removed with or without our individual blessing. 70% of donor requests are granted by the family without the deceased person even being on the Organ Donor Register.	How can consent ever be presumed? “Sorry your honour I presumed she wanted sex.” Isn’t that called rape? Cynically it could be argued that if presumed consent replaced explicit or informed consent the government would argue that more donors would be made available and other vital reforms could be abandoned. Given the conservative (with a small 'c') nature of British culture perhaps we should keep with the status quo. Why change? A politically motivated move towards presumed consent could backfire. The public’s response could become a statement of their views on the government introducing the legislative change rather than an informed consideration of the merits of the proposals. An unsuccessful or premature change away from the opt-in system could seriously damage the transplant process. That would be unforgivable for the people desperately waiting for a transplant.

A very detailed review of presumed consent procedures elsewhere in the world was commissioned by the Organ Donation Taskforce to assist its investigations. The report is entitled:

“A systematic review of presumed consent systems for deceased organ donation” by A Rithalia, C McDaid, S Suekarran, G Norman, L Myers and A Sowden (Centre for Reviews and Dissemination (CRD), University of York ) - published May 2009.

The full report can be downloaded as a PDFfile from the following web link: [Report web link]

The report’s conclusion states:

Presumed consent alone is unlikely to explain the variation in organ donation rates between different countries. A combination of legislation, availability of donors, transplantation system organisation and infrastructure, wealth and investment in health care, as well as underlying public attitudes to and awareness of organ donation and transplantation, may all play a role, although the relative importance of each is not clear. Further reviews could investigate the factors likely to modify donor rates, such as procedures for family involvement. The way in which families of any potential donor are approached is likely to be an important factor and a review of qualitative research examining the experience of relatives in this context would be useful.

The final sentence of the report’s conclusion identifies perhaps the most important element in raising public commitment to donation and transplants. Central to the process of tissue or organ retrieval are the wishes of the deceased person (if known), the views of the bereaved family and the manner in which they are approached at the time of their bereavement. Fully skilled health professionals that have established a caring and supportive relationship with the patient and their family are critical to the success of organ retrieval. Where meaningful end of life choices are offered to families with trust and compassionate support, the request for donation flows naturally from this broader caring relationship with more positive outcomes. Study after study shows this to be true.

Would the introduction of presumed consent enhance the quality of relationship between the bereaved family and their carers? I suspect not. In fact I suspect it would achieve the opposite.

Other views on Presumed Consent

The British Medical Association submitted a document to the Taskforce which fully backs the introduction of presumed consent entitled “Organ Donation in the C21st”. This document can be found at the following web link: [The BMA web link]

In July 2008 the House of Lords published the following report:

"Increasing the Supply of Donor Organs within the European Union"(17th Report, HL Paper 123) which discusses a range of transplant issues, including presumed consent.

You can read or download this report in PDF format for futher information. 

Many organisations and individuals submitted their views to the House of Lords sub committee investigating the supply of donor organs. This evidence provides valuable insights into transplant process. The evidence can be found at the following web link:[The Lords evidence web link]

The transcript of the Lords debate on the report can be found at the follwoing web link: [The Lords debate transcript web link]

To view all the information that was presented to the Organ Donation Taskforce on the issue of presumed consent please go to the Department of Health webs site which takes you to further links: [ODT report on Presumed Consent]

The main report from the ODT on presumed consent concludes by stating:

The Taskforce shares the same passion for increasing the number of organ donors as those calling for presumed consent. it simply concludes that there is a way of getting to the same place by a different, less risky route. only if donor numbers have not grown by 50% by 2013 should the question of opt out be revisited. meanwhile, every effort should be made to deliver the potential for increase within the current legal system.

You can read or download this Taskforce report in PDF format for futher information. 

The alternatives are clear. If the rate of donation and transplants do not increase by 2013 Britain could move from a voluntary opt-in system for organ donation to one based on presumed consent where the individual is automatically a donor unless they opt-out. What do you want for you and your family?

Alternative methods of consent will be considered at a later date in this section of the website. After all, a debate needs to consider more than one alternative to raising donor numbers.

To be continued

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