Families' wishes could be over-ruled under new presumed consent for organ donation

Families of potential organ donors could be overruled under a new model of “presumed consent,” a public consultation suggests.

Theresa May has vowed to introduce a new model of organ donation, which would automatically enter everyone on the donor register, unless they had specifically opted out.

Today the Health Secretary will begin public consultation on the change to the law, in a bid to save the lives of 6,500 people currently waiting for a transplant.

Areas for discussion include “how much say families should have” over donation of their loved one’s organs.

While 80 per cent of people say they are willing to donate their organs just 36 per cent are on the organ register.

Currently, relatives are able to block donations, even if the deceased had a donor card.

Figures from NHS Blood and Transplant suggest that in the last year, 1,100 families decided not allow organ donation because they did not know what their relatives would have wanted, with around 100 further cases where explicit wishes were over-ruled.

The public consultation - expected to trigger fierce debate- will ask the public for their views on just how much say families should have over donation decisions.

People will be asked: “Do you think someone's family should be able to decide if their organs are donated, if it is different to the decision they made when they were alive?”

It will also suggest that some categories - such as children, and those lacking mental capacity to take decisions, should be exempt from the system, meaning they would still need to “opt in” to be a donor while alive.

Health Secretary Jeremy Hunt called on the public to overcome a “fatal reluctance” to discuss their wishes with their loved ones.

Only about half of adults on the current organ register say they have discussed their wishes with a relative, meaning their views can end up being over-ruled.

Mr Hunt said: “Every day, three people die for want of a transplant, which is why our historic plans to transform the way organ donation works are so important. We want as many people as possible to have their say as we shape the new opt-out process.

“But as well as changing the law, we also need to change the conversation – it can be a difficult subject to broach, but overcoming this fatal reluctance to talk openly about our wishes is key to saving many more lives in the future.”

Millie Banerjee, Chair of NHS Blood and Transplant, said:

“We welcome the Government’s commitment to the lifesaving power of organ donation, which is demonstrated by their desire to hold a consultation into an opt out system.

“We hope the consultation starts a national conversation about organ donation. If you want to donate, please tell your family now.”

But Hugh Whittall, Director of the Nuffield Council on Bioethics, criticised the Government’s approach, saying the public had never been asked whether it wanted to move to presumed consent.

“We are concerned that the Government consultation goes straight into asking how an opt-out system should be introduced, rather than if it should,” he said.

Mr Whittall said such changes should not be made until there was evidence such schemes worked, raising fears that a backlash could mean a drop in donations.

“We all want to maximise organ donation in a way that is in keeping with people’s wishes.  The issue is what is the best way to do this, and we need first to understand the evidence and the implications of the options.

“The Government should not be making this change until there is evidence that it works, and until we are confident that it won’t undermine people’s trust in the system in the long-term.  That evidence is simply not there yet,” he said.

While an “opt out” approach has seen a rise in donations in Spain, since its adoption, this was linked to raised public awareness, encouraging family discussion, and better support and communication between specialist nurses and bereaved families, he said.

In Wales the number of donors has not increased since an opt-out system was introduced two years ago.

Fiona Loud, Director of Policy at Kidney Care UK, said: “With eight out of ten people on the transplant list hoping for a kidney and at least one person dying every day while waiting, this consultation – the first of its kind in England – is a unique chance to change this. Whatever your views are on organ donation, please share them; and it’s a good time to make sure your loved ones know how you feel too because currently we have one of the lowest rates of consent to donation in Europe.”

Video: Theresa May speaks about organ donation