The arguments for and against ‘opt out’ organ donation

Mother of seriously ill patient says system still not working despite change in law


The mother of a seriously ill patient has described an organ donation scheme that came into effect last year as “flawed”.

The change in law, which came into effect on 20 May 2020, meant it could be assumed that all adults in England would automatically become organ donors when they die, unless they opted out or were members of an “excluded group”.

The change - known as Max and Kiera’s Law - was intended to make it easier for people to donate their organs. A total of 296 donations took place in the 12 months after it came into effect, the BBC reports.

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But Cathy Meredith, the mother of 28-year-old Sarah Meredith, who is seriously ill with cystic fibrosis, says that family are still able to prevent their relative’s organs from being donated, even with this change in the law.

Speaking to South Hams Gazette, Meredith said it is wrong that “people now believe that if they do wish to donate their organs they need do nothing”.

She told the paper that people should sign up to the NHS Organ Donor Register (ODR), so that “clinicians can approach the family knowing that person wanted to be a donor”. In cases where families are unaware their relative’s intentions, 69% “will decline consent”, she said.

MP for Totnes Anthony Mangnall has agreed to raise the issue in parliament. “I am proud not only to carry my organ donation card with me but also to have actively joined the organ donor register,” he said.

What is automatic organ opt-out?

Under the scheme, patients aged 18 or over have to opt out if they do not want to be an organ donor. Families of those donating their organs are still able to withdraw consent on behalf of their loved ones.

Before the change, organs and tissues could only be taken from patients in England if the deceased joined the Organ Donor Register (ODR) or informed their relatives before their death that they wished to donate.

More than 5,800 people are on the organ waiting list in England, and an average of three people in need of an organ transplant die each day. In 2018, more than 400 people died in the UK waiting for a transplant, the BBC reports.

In the financial year to March 2021, the number of lives potentially saved or improved by receiving an organ donation fell by 30%, NHS figures show. However, the number of people opting into the ODR rose from 26 million to 26.7 million by the end of March 2021.

What is family refusal?

Family refusal is currently the “biggest obstacle to donation”, says the NHS. Around 91% of families agree to organ donation if their relative is on the organ donation register (ODR), according to figures from the NHS Blood and Transplant potential donor audit.

However, when patients are not on the ODR then 55% of families say no to a donation.

The number of people from black, Asian and minority ethnic communities who received a life-saving transplant hit a record high in 2020, at 1,187. People from these communities usually have to wait longer for an organ transplant, due to a lower number of donors from these ethnic backgrounds being registered as donors.

It was hoped that the introduction of the new law would reduce this discrepancy, and initial figures indicate this may be starting to happen. Millie Banerjee, chair of NHS Blood and Transplant, has said: “It’s really encouraging to see the number of people from ethnic minority groups receiving the lifesaving transplants they need.”

“However, there is still a long way to go to close the gap between the number of people donating organs and those waiting for a transplant”, she continued.

The pros and cons of automatic organ donation

Arguments for automatic organ donation:

  • More than 5,500 people in the UK need a transplant, but a shortage of donors means that around 3,500 transplants are carried out annually
  • Advances in medical science mean that the number of people whose lives could be saved by a transplant is rising more rapidly than the number of willing donors.
  • The law as it was previously condemned many, some of them children, to an unnecessary death, simply because of the shortage of willing donors while, as the British Medical Association puts it, “bodies are buried or cremated complete with organs that could have been used to save lives”.
  • Doctors and surgeons can be trusted not to abuse the licence which a change of the law would grant them.
  • Objections to a change in the law are sheer sentimentality. A dead body is an inanimate object, incapable of feeling.

Arguments against automatic organ donation:

  • Few question the value of transplant operations or the need for more donors. But a programme designed to recruit more donors is preferable to a change in the law.
  • The law change implies that our bodies belong to the state as soon as we are dead. The assumption is offensive.
  • Organ removal without the expressed wish of the deceased could be distressing for his or her family.
  • The change in the law is open to abuse, with the possibility of death being hastened to secure an organ needed by some other patient.
  • The safeguard - that is, the right to refuse permission for your organs to be removed - is inadequate. A terminally ill patient or his/her relatives would be made to feel selfish if permission was withheld.
  • Families may feel the wishes of their loved ones are more ambiguous compared to opt-in systems, leading to higher risk of family refusal.

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