This article was originally published in STEP Journal Plus and can be accessed here.
Who decides what happens to your organs on death? This question has raised legal and ethical dilemmas since the first successful organ donation in 1954. The tug-of-war between the right to choose what happens to your body and society’s desire to reduce mortality rates has been played out in UK parliament, the courts and hospital waiting rooms for decades. The government has sought to resolve the argument through the Organ Donation (Deemed Consent) Act 2019 (the Act), but in doing so can individuals still be certain their wishes will be respected?
The need for healthy organs to save the lives of desperately ill patients has increased in recent years and, at the time of writing, 1,759 people in the UK were waiting for a transplant. Deceased donor numbers (i.e., those people whose organs have been donated after death, as opposed to living donors) have steadily increased every year over the past decade, rising from 959 in 2009 to 1,600 in 2019. However, of the 600,000 deaths in the UK in 2018-19, only those people who died in hospital can be considered donors, which amounts to less than half of total deaths. Of those, the number of eligible donors was whittled down to 5,815, more than half of whom had not formally provided their consent during their lifetime. The number of eligible donors who had provided prior formal consent therefore represented less than 0.5 per cent of total deaths in 2019.
With an ageing population, increased obesity and people dying less frequently of sudden trauma adding to the scarcity of healthy organs suitable for transplanting, that rate needed to increase to satisfy demand. But how?
Position before May 2020
The system prior to 20 May 2020 relied on ‘opting-in’, meaning individuals made a positive decision to record their consent to organ donation. The National Health Service (NHS) Organ Donation Register (the Register) showed a tally of 25.3 million people who had consented to donation in 2019, or 38 per cent of the UK’s population. On death, families could still consent to or refuse donation, but a prior decision recorded on the Register frequently helped them to reach a conclusion during a difficult time. Carrying a donor card used to be a good indicator of a person’s wishes as well, but for a number of years the NHS has been keen to ensure that the Register is the primary source of that information.
What has changed?
With effect from 20 May 2020, in England, all adults are deemed to have consented to be an organ and tissue donor, unless they have opted out of the system or they fall within certain groups.
The opt-out system, also known as ‘Max and Keira’s Law’, following years of campaigning by families who had benefited from organ donation, amends the Human Tissue Act 2004 and is aimed at putting the onus on individuals to decide against organ donation, rather than the recent of opting in to organ donation.
The opt-out system does not apply to the following groups:
- people lacking mental capacity to make decisions for themselves;
- individuals ordinarily resident in England for fewer than 12 months before death;
- visitors; and
- people living in England who have not chosen to live here.
To opt out, individuals must either record the decision on the Register or speak to friends or family and make plain their views. Individuals can, of course, change their mind, but they would need to do so either by amending the Register or speaking to close loved ones.
This opt-out system brings England more inline with Wales, which introduced similar legislation in 2015, and will be matched by Scotland in 2021.
What must be done?
Practitioners should advise clients that if they do not want their organs or tissue to be donated, they must make a positive decision to opt out. They can do so by contacting the Register. Their personal contact details will be taken, and they will subsequently be contacted by the NHS with confirmation of the decision. This follow-up letter also gives information about how to reverse the decision to opt out.
The Register can also still be used by individuals to record their decision if they do want their organs to be used, despite the changes brought in by the legislation, which should make that unnecessary. The reasoning is to allow evidence to exist of a decision to positively consent to donation, effectively to reinforce the message of the opt-out system.
It is worth noting that decisions that have been lodged at the Register prior to 20 May 2020, both for and against organ donation, will remain in force.
The key point to note is that, once the medical team have checked the Register and no decision has been recorded, deemed consent will mean that organ donation can go ahead, assuming all other criteria are met. However, the Act still allows a ‘person who stood in a qualifying relationship’ (essentially next of kin in order of familial closeness to the individual, but including a cohabiting partner) to override the opt-out system. This person would need to ‘provide information that would lead a reasonable person to conclude that the person concerned would not have consented’.
The kind of information that family members would need to provide is not defined. The NHS is strongly encouraging people to speak to their family and close friends about their views on organ donation. One can quite see why. At a time of intense grief, such a conversation, in which medical staff will need to explain that the law has imposed deemed consent to donate, could be extremely troubling to family members who may have their own deeply held reasons for withholding consent. A medical team, under the time pressure of ensuring a donation takes place at optimum usefulness, would need to weigh up whether the legal obligation imposed by deemed consent should outweigh what may be strong opposition from family members. It might be assumed that, in those circumstances, deemed consent could be overridden, despite the lack of sufficient information.
What do we need to know, as private client practitioners?
Organ donation is likely to become a more frequent topic of conversation with clients, as greater awareness of the change to the law permeates society. That said, it may not crop up frequently in meetings with clients when discussing wills.
It is certainly possible to express wishes in a will about the donation of organs and tissue. However, the urgency with which such decisions would need to be made on death likely means that locating a copy of the individual’s will becomes impractical. So directing the client to record their decision on the Register would generally be more appropriate.
It is worth noting that, in the context of whole or partial body donation for anatomical research, a client will still need to either nominate a representative to make decisions after death in this respect, or clearly set out their instructions in writing in front of a witness. This can easily be achieved within their will.
In giving instructions regarding lasting powers of attorney (LPAs) for health and welfare, a client may well have organ donation in their mind, but this aspect is not one that would be covered by an LPA, dealing as it does with matters during the donor’s lifetime. That said, if a client wanted to express guidance about organ donation in the health and welfare LPA, it is unlikely to be struck out by the England and Wales Office of the Public Guardian, and would be useful for their family to be aware of. Nevertheless, the Register would still be the preferred location to record decisions.
The change to an opt-out system is likely to ensure that the NHS will benefit from greater certainty that more organs and tissue will be available for transplant. For many families at difficult times, the pressure of deciding whether to consent to transplant will often be removed by the introduction of deemed consent.
Families will always still be approached by medical staff before organ donation takes place, so giving the family the opportunity to discuss the decision. However, in the absence of a decision recorded in the Register, the possibility that families could override a wish expressed during lifetime by the donor is a concern. Whether it is one that will arise often in practice will have to be seen.