Given the acute shortage of organs for transplantation in England, there have been calls in recent years to switch to a system of presumed consent, otherwise known as opt-out. Wales made the move in 2015, and Scotland announced they would be following suit last year, which has given some serious credibility to campaigns. This is not the best way to increase the donor pool, nor is it particularly effective.
Opt-out has existed in Wales for just over 2 years, so we are starting to analyse changes. From 2015/16 to 2016/17, there has been a modest increase in the number of transplants of various organs. This has been deemed “encouraging” by Vaughan Gething, the Health Secretary for Wales. There is, however, no evidence that this is a direct result of legislative change. Given how minimal the improvements were, it is unlikely that this is the case; England has also seen a small improvement as is the case almost year-on-year. Here we can look to Spain, which is frequently held up as the bastion of presumed consent. In reality, it was not until organisational changes were implemented 10 years after the introduction of presumed consent legislation that transplant rates began to improve. Quite clearly, presumed consent is not the reason for Spain’s enviable position. It is, rather, the introduction of donor coordinators, and the long family contact method, that are responsible.
The primary reason for opt-out’s lack of impact is that it is always soft opt-out that is introduced. Soft opt-out means the family is still involved in the decision and can stop the removal of organs, as opposed to hard opt-out where removal goes ahead regardless of the family’s wishes. High family refusal rates are a huge obstacle to transplantation, as families are either uncomfortable making the decision when they are unaware of the deceased’s wishes, or they are in such a state of grief that they simply do not wish to think about it. In the current informed consent system, the family can refuse even if the deceased was on the Organ Donor Register - this I find deeply inappropriate. Soft opt-out does nothing to overcome this problem as the family retain final say.
Hard opt-out is not a suitable alternative as it is an extremely unpopular policy. Attempts in the 1990s to implement such a system in Brazil were unsuccessful. The public responded badly to the decision, forcing the government to repeal the law just a few years later.
It is understandable that medical staff choose to respect the wishes of the deceased’s family. When they are the ones in front of you pleading that the body of their loved one not be mutilated, it would take an incredibly strong-willed individual to ignore them. Even in a system of informed consent when the deceased was a registered donor and the family objects, the reality for hospitals is that the family are the ones who are able to go to the media and/or courts if they are ignored, which has the potential to damage the whole organ procurement operation in the UK. For this reason, the move to soft opt-out is a waste of time. The only way to improve donation rates is to change the public psyche.
By normalising donation, we can drastically increase the number of transplants taking place. This is certainly no easy option, which perhaps explains why it is never seriously considered. In the UK in particular, it would require the public to overcome the taboo of discussing death to talk openly with one’s loved ones about organ donation. Then, when a family is approached at that most distressing time, they will take pride in consenting to their loved one’s organs saving lives.
In particular, the focus should be on students. In schools, organ donation should be discussed as the socially responsible norm upon death. In universities, campaigns should focus on getting students to more openly discuss donation with their friends and family. University students are an important target for awareness as, in reality, healthy young adults who die in road traffic collisions and skiing accidents etc. are prime donors. It is also true that such deaths, being so unexpected, can cause greater distress to families than, say, an elderly member of the family passing away. For this reason, it is vital in these situations that the family are aware of the deceased’s wishes.
I am, as is evident, a huge advocate for organ donation. I would never, however, attempt to make someone feel guilty if they are uncomfortable with the idea. What I am most concerned with is the need to talk. Discussing donation introduces clarity, so that whether the deceased wanted to donate or not, the family is aware of the deceased’s wishes and is happy to respect them.