Presumed Consent

At the Conservative Party Conference in October 2017, PM Theresa May pledged to introduce a system of presumed consent for organ donation in England. A similar opt-out system has existed in Wales since 1st December 2015, and in the summer of 2017 the Scottish government stated that it intended to introduce a “soft opt-out” for organ donation in Scotland.

70s_girl, Going Postal

I object very strongly to this change, the concept of presumed consent subverts the whole nature of organ donation. No longer will it be an altruistic gesture, the state will claim ownership of your body parts when you are near death, unless you specifically register your objection on the official database.

The intention of this change is to increase the number of organs available for transplant, but since the change was made in Wales, there has actually been a small drop in organ donors; 64 in 2015/16 to 61 in 2016/17 (this resulted in a drop of actual organs transplanted from 214 to 187). However, the BMA believes that over time, such a scheme will lead to an increase in organ donation, and within a year or so this will be the default position in (most of) the UK.

There is a government consultation on the introduction of this opt-out system in England, which closes on 6th March 2018 – Organ Donation

The main issues being considered are;

  • How much say families should have in their deceased relative’s decision to donate their organs / how family members should be involved in confirming decisions
  • When exemptions to opt-out would be needed and what safeguards would be necessary
  • How such a system might affect certain groups depending on age, disability, race or faith

Having read the information on the proposed changes and discussion of it by medical professionals, I am quite alarmed at some of the language used, phrases like this (used on Intensive Care Society website) are extremely worrying; “given the general expectation that expressed consent and deemed consent will be treated as equivalent”. I believe that this might turn out to be much more of a hard opt-out, then we are being led to believe. If failing to register your opt-out, from the donor register, is to be treated as equivalent to choosing to be a donor, and the consultation concludes that families should have little or no ability to challenge this status, then the government has effectively given doctors the power to seize a dying person’s organs. There are only 9 questions in the consultation and 2 of them are about how much say, if any, the family should have in whether the organs of their loved one are taken.

The number of registered organ donors has been steadily increasing for some time (you can opt-in simply by ticking a box when filling in any number of official forms) it is up 75% over the past 10 years, and there are now close to 24 million people on the NHS Organ Donor Register. The number of organs transplanted in the UK in 2016/17 was the highest ever, but clearly these numbers are not enough, the aim is to match supply with demand. There are 6500 people on the UK transplant waiting list and although more than half a million people die each year in the UK, only around 5000 people die in circumstances or from conditions that mean that their organs could be suitable for transplantation (i.e. in a hospital whilst on a ventilator). Again from the Intensive Care Society blog.

“But we have made no improvements in consent and 30% of families continue to say no.”

So it looks like there might be an intention to target the 30% of families who refuse consent for the organs of their loved one to be taken.

Another disturbing thing I discovered whilst researching organ donation was a procedure known as Non Therapeutic Elective Ventilation (NTEV); a practice where people with brain injuries are kept alive solely to seek out recipients for their harvested organs.

This practice has been deemed illegal in the UK since 1994 but in 2012 its potential to increase donor organ numbers was debated by BMA and this discussion paper from 2016.

– suggests that it should be looked at again. It argues that changes in the law over the last 20 years mean that when deciding whether to harvest organs or not, more weight should be given to the “wishes and feelings” of the potential donor (than family members who might object);

“It is now clear that a decision about whether something is to a person’s overall benefit should be judged not solely on the basis of clinical factors (such as what effect a treatment would have on their survival) but also on the basis of what is known of their wishes, feelings, beliefs and values”

This is of course assumes that doctors know for certain what the wishes and feelings of potential donors are. If you haven’t opted out they’ll assume that you’re happy to be popped on life support while they find a match for your organs. You may think that this is far-fetched and this procedure will never be re-introduced, but I’m not so sure, especially if the move to presumed consent doesn’t produce the desired increase in available organs.

I have another problem with organ donation, something that I hadn’t even considered when I signed my organ donor card upon getting my driving licence at 17; that my organs would need be taken before I was dead. I carried that card for 20 years and then I listened to a BBC 5 Live interview with Consultant Anaesthetist Dr Philip Keep, who was suggesting that organ donors should be anaesthetised when their organs are being harvested. Although donors are diagnosed as “brain dead” their heart is still beating and their lungs are ventilated. He maintained that organ donors responded, as if they felt pain and that many in the profession felt uneasy about the ICS guidelines; that donors should be given paralysing drugs but no anaesthetic.

“Nurses get really, really upset. You stick the knife in and the pulse and blood pressure shoot up. If you don’t give anything at all, the patient will start moving and wriggling around and it’s impossible to do the operation. The surgeon has always asked us to paralyse the patient.”

As the article suggests, following his claims there were fears that many people would tear up their donor cards. I did.

I clearly remember this, there was some discussion of the topic at the time, you can still find a few articles on the internet, but I have not heard or read anything about this controversy since. I have tried to find out whether organ donors are now given anaesthetic or not, but I cannot establish what the current ICS guidelines are. Perhaps this is why, despite the millions who have signed up to be organ donors, that there is still a reluctance to give permission for the organs of a loved one to be taken? Only when you are faced with the heart wrenching decision will you ask the questions that you really should ask before signing up; what actually happens during organ harvesting? What are the tests done to determine “brain death” and can you assure me that my loved one will not feel anything?

Does it matter that organ donors are not dead? I reckon it does and this really should be part of the consultation about presumed consent.

Does it matter that organ donors are not dead? Ethical and policy implications M Potts, D W Evans

Excerpt [A key point is that individuals are not able to understand the issues, and therefore cannot give informed consent to organ donation, if they do not receive accurate information about the procedure. They should know that, in current practice, most organs for transplant are taken from ‘‘brain dead’’ individuals who are not dead in the sense that their circulation and respiration have ceased, or that their brains are really and truly dead. They should be aware that the diagnosis of ‘‘brain death’’ is not soundly based or universally accepted, and that there are serious questions about its constituting the death of the person. The public should also be aware that there remains uncertainty regarding the generation of consciousness in the brain, and that it is not always clear that there is no capacity for consciousness remaining in individuals declared ‘‘brain dead’’. Much of the information given to the public regarding organ donation and the declaration of death comes through literature in support of people signing organ donor cards. Currently, the statement on organ donor cards asserts that organs may be taken ‘‘after my death’’. We believe that such wording should be changed to reflect the fact that ‘‘brain dead’’ individuals are not dead in the usual understanding of what death is. Explanatory literature accompanying organ donor cards should be frank that a ‘‘brain dead’’ donor’s heart is beating during part of the organ removal surgery. There should be open public discussion and debate on the determination of death instead of the current domination of the orthodox ‘‘whole brain death’’ (US) or ‘‘brain stem death’’ (UK) positions. Pluralism on the issue of the determination of death should be publicly acknowledged. Proposals to make organ donation the ‘‘default’’ unless the potential donor says otherwise should be rejected, since such policies are not only open to abuse, but also too easily allow patients who oppose brain death criteria to become organ donors against their wishes. Another difficulty is that such ‘‘presumed consent’’ cannot be valid unless all those eligible to be donors under these policies—that is, the public as a whole—fully understand the organ procurement procedures.]

Despite all of the above, I am not against organ transplantation, it is a marvel of modern medicine. Thanks to organ donors and the skills of surgeons, people who have been terribly ill, have been given a new life through organ transplantation. What I am against is the misleading way this topic is presented, the way information is kept deliberately vague and the recent proposal to make presumed consent the default position.

This should be a time to discuss organ donation in depth and if some medical professionals have doubts about the process, I want to know. Maybe Dr P Keep was an eccentric and was at odds with every other anaesthetist, maybe he was a whistle-blower who has since been successfully silenced. I would like to have read the letter he wrote, back in 2000 to Anaesthesia (the journal of the Royal College of Anaesthetists) but have been unable to track it down on the net. Whatever the case, you can be sure that very soon Presumed Consent will be the default position for every citizen, if you’re happy or unconcerned by this change, fair enough. But if like me, you’re worried, now is the time to have your say before it’s too late. For me, it is a step too far and I’ll be opting out.

© 70s_girl 2018