Heart of the matter

Surgeons have been using transplantation to save the lives of dying people for the last 50 years. However, since the first successful transplant of a cornea in 1905, the waiting list for organs has been steadily growing, and every day in Britain three people die waiting for an organ donation.

It is felt by many that the number of lives lost due to the lack of available organs for transplantation is one of Britain’s greatest scandals, and over recent years there have been calls for the current informed consent system for cadaver organ donation to be reformed. The passing of the Human Transplantation (Wales) Act 2013 on 10 September 2013 represented a major overhaul of social policy in the area of organ donation, and begs the question, should Scotland be the first to follow in Wales’s footsteps?

It appears that the Evening Times and Kidney Research UK (Scotland) think so, having lodged a petition with the Scottish Parliament (interestingly predating the change in Welsh legislation), entitled “Opt for Life”. However, as with any issue that raises strong emotions, it is not without its critics. There are many who disagree with a presumed consent system, arguing that the principles of soft paternalism that underline it have no place in our society. This article seeks to address whether there is a place for a system of presumed consent in Scotland, a country that constantly seeks to balance the rights of an individual against the greater good of society.

Guaranteed increase?

Despite the fact that 359 organ transplants were carried out in Scotland between 1 April 2012 and 31 March 2013, there are still more than 635 people who require an organ transplant. Studies show that while up to 90% of the Scottish population support organ donation, only 41% have registered to be donors. Critics of the current system argue that these statistics show that the current system is not effective and that there should be a shift to a system of presumed consent. However, Professor John Fabre, a former president of the British Transplantation Society, is of the opinion that presumed consent is a “simplistic” way to try to boost organ donation rates, a view taken by many who also believe that the significant investment required to introduce a new system would outweigh the benefits created.

So what impact would the introduction of a system of presumed consent have on the number of organ donors? It is assumed that there is a correlation between this type of system and an increase is organ donation. However, if we look to our European neighbours, we will see that this is not necessarily the case. Sweden, for example, which introduced a presumed consent system in 1996, has a donation rate that is lower per million than the UK. While Spain operates a system of presumed consent and is recognised as having a higher number of donors than the UK, it has acknowledged that the improvements in donor rates should be attributed to the implementation of a comprehensive national procurement system, and not to the implementation of a presumed consent system.

Even if it is accepted that a system of presumed consent would result in greater organ donation, for many the benefits of such a system would be outweighed by the human rights implications. In Scotland, we pride ourselves on living in a society in which the autonomy of an individual is almost sacred. Yet, with the introduction of system that “nudges” people to act in the broader public’s best interests, can it really be said that we are protecting an individual’s right to self determination by taking their silence as compliance? Many argue that the system would take away an individual’s choice, and that the state would essentially be given ownership over an individual’s organs. Supporters of presumed consent argue that a “soft” version of the system would protect the right to self-determination, by allowing individuals to register an objection, and subsequently remove themselves from the register.

The Welsh way

Wales has opted to introduce a “soft” system of presumed consent from 2015, which will provide that individuals aged 18 or over, who have been resident in Wales for over 12 months, will be presumed to have given consent for their organs to be used following their death, unless they have opted out. An unwillingness to donate will require to be recorded in writing. This type of system has often been called “consent for the disorganised”, and clearly differs greatly from the current system, which requires individuals to be proactive and explicitly consent to the use of their organs by carrying an organ donation card, joining the NHS organ donation register, writing it down, or telling their relatives.

As previously highlighted, the main fear with this system is that people will not get around to registering their objection, or will not register an objection as they do not fully understand the system, and therefore their silence will be taken as consent. Critics argue that this will lead to unnecessary anguish and suffering on the part of the patient’s relatives, who may know of the patient’s objection. This is why the Welsh have opted for a “soft” system that allows the family of individuals who did not register their objection to be consulted, in order that an unregistered objection can be identified. This would, in effect, give the individual two chances to register their objection. The first would be the conventional written method prior to death. The second would be via the relatives, post mortem.

The current system does not give relatives any legal power over their loved ones’ organs, if the patient consented by joining the organ donation register prior to death. Under the current relevant legislation, if a competent living person has given their consent for organs to be donated on their death, there is deemed to be sufficient consent. However, s 4 of the Welsh Act provides that it shall be presumed that an individual consented to donation unless “a relative or friend of long standing of the deceased objects on the basis of the views held by the deceased, and a reasonable person would conclude that the relative or friend knows that the most recent view of the deceased before death on consent for transplantation activities was that the deceased was opposed to consent being given”.

This gives the family a chance to ensure that their relative’s wishes, and their right to self determination, are upheld. However, critics of this “soft” system are uncomfortable with the extent of rights that are given to an individual’s family under the 2013 Act, and it is difficult to see any significant benefit of a presumed consent system if relatives are given this many powers. Ultimately, if the individual has registered an objection, the transplant cannot take place; however if they have not registered an objection, the doctor can consult the relatives. The relatives then potentially have the right to veto the individual’s decision not to object. While this view is criticised by many, it could help ease the pain that the deceased’s relatives feel. Perhaps one could even go as far as to say that an individual would rather do anything they could to make their death as easy as possible for their family, and this may even mean deserting their views on donating their organs.

There is another way to view this, which is that opt-out systems ease the pain of the relatives as they “relieve the families of the burden of making a decision in the absence of any indication as to the deceased’s wishes”. This is an extremely paternalistic view which does not sit comfortably with many who are already frustrated by the increasing control that the Parliament has over the citizens of Scotland.

Premature?

So what is next for Scotland? One could say that rather than condemning the current system, we need to increase efforts to raise awareness about the benefits of organ donation and ensure that there is sufficient information available to enable individuals to make an informed choice. We should continue to ensure that the registration system is easily accessible, and respect the views of the individual but not ignore the families. If after investment in the current system there were still calls for a new system to be introduced, ideally it would require individuals either to opt in or opt out. This would provide a greater degree of certainty about an individual’s wishes upon their death. However, as it currently stands, it is fair to say that there is neither a need nor place for a system of presumed consent in Scotland.