Organ donation: Presumed consent is a two-headed horse
Introduction
There is a debate in progress surrounding the need to increase the organ supply, in particular for renal transplants.[1],[2]
There are currently 2 major fronts. One is the argument to increase the supply by allowing payment to donors for organs. Another is the argument for presumed consent recently raised by the Chief Medical Officer.
Focusing on the latter argument it is possible to see that, in essence, it boils down to the choice between those who believe that the loss of something intangible but valuable in society is justified in light of the potential lives saved. The intangible social goods that are exchanged are:
(1) the gift relation that currently exists between donor and recipient of a human organ and;
(2) a power give to the state permitting it to harvest organs from those who have not declared their intentions in relation to personal donation.
2 positions within presumed consent
The crux of presumed consent is that we are asked to accept the retrieval of organs from those whose decision in relation to organ donation are unknown. There are in fact 2 positions that a person in favour of this approach could take in this argument.
(a) Presumption of consent. The implicit assumption is that most people would have consented to organ donation if asked.
This argument inherently respects personal autonomy in that it chooses not to remove organs if it has evidence that a patient would not autonomously offer them. It rests on the idea that the problem is our lack of knowledge of people’s preferences. This idea can be called the presumed consent knowledge gap.
In the case of patients who have never been competent the presumption of consent would be fiction. A best interests hardly seems to operate to justify donation. This view therefore struggles to justify retrieval from such patients.
(b) The justified retrieval argument proposes that the end of saving lives justifies the invasion of the intangible social goods.
This argument is that the need for organs justifies the compromise to human dignity that is involved in the removal of organs for the benefit of the living. Only an autonomous refusal of consent by the donor can be more valuable than the benefit to the recipient of the organs. This makes it a form of justified organ retrieval argument.
This view does not struggle to justify the retrieval of organs from patients who have never been competent to the same extent as the presumption of consent position. This is because it rests far more strongly on a consequentialist base.
We can distinguish which of these 2 underlying positions is held by someone arguing in favour of presumed consent by asking them: "What would you do with organs of a patient who has never been competent?". To explore thier position further we could also ask them "Why would you choose this outcome?"
The justified retrieval argument uses a cloak of fictional consent to achieve a consequentialist goal. This is a dangerous thing to do in modern healthcare. The threat is to patient trust. This threat is genuine as the Alder Hey Inquiry demonstrates. That inquiry made recommendations for explicit consent procedures which have been implemented in part by the Human Tissue Act 2004. To understand why this approach is so fraught it is important to remember that consequentialism and personal autonomy do not sit well together.
Conclusion
There are interlocking consequentialist justifications underpinning both positions.
- Presumption of consent uses the consequentialist argument to justify the move from express to implied consent.
- Justified organ retrieval masquerades behind a cloak of presumed consent. A cloth that was in fact cut for dressing personal autonomy.
If the argument in support of moving away from express consent to organ donation is to be effectively resisted then we must distinguish clearly between presumed consent and justified organ retrieval. They are importantly different.
One possible counter position to the presumed consent arguments lies in seeking to close the consent knowledge gap. This could be done by imposing a legal duty upon the relevant doctor to ask the patient or next of kin about organ donation around the time of death. This duty should be subject to a privilege of non-maleficence to avoid a situation of imposing unbearable burdens of choice in already difficult situations. Additionally it could be required that a clause declaring organ donation preferences are present in any advance decisions created under the Mental Capacity Act 2005.
Update 2021
The Organ Donation (deemed consent) Act 2019 amends s.3 of the Human Tissue Act 2004 to implement presumed consent in England. The net effect is that the State has secured a proprietary right over your organs. It is a right to use them as it sees fit after your death unless you formally register your objection or "a person who stood in a qualifying relationship to the person concerned immediately before death provides information that would lead a reasonable person to conclude that the person concerned would not have consented."
The justification is that it will increase the flow of organs from donors to recipients.
Summary of the data from NHS Blood and Transplant for the period 2020 - 2021 states that
"Some of the other key messages from this report are that, compared with last year, there has been:
- a fall of 33% in the total number of kidney transplants
- a fall of 49% in the total number of transplants involving a pancreas
- a fall of 19% in the total number of liver transplants
- a fall of 7% in the total number of heart transplants
- a fall of 44% in the total number of lung or heart-lung transplants
- a fall of 40% in the total number of intestinal transplants
- a fall of 35% in the total number of corneas retrieved to NHSBT Eye Banks and a fall of 47% in the total number of corneal transplants
- The overall referral rate of potential donors has dropped from 93% to 83%, but there has been an increase in the proportion of approaches where a Specialist Nurse - Organ Donation was present, from 92% to 93%
- an increase in the overall consent/authorisation rate for organ donation from 68% to 69%
- an increase in the number of opt-in registrations on the ODR, from 26.0 to 26.7 million at the end of March 2021. There were 2.0 million opt-out registrants"
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