Analysis

Opt-out plan will allow children to express their wishes on organ donation

The government’s plans for an organ donation opt-out system could come into force in 2020

The government’s plans for an organ donation opt-out system could come into force in 2020

Transplant_Boxes
Picture: Phillip Carpenter

The government has set out its plans for an opt-out system for organ donation in England.

If parliament votes in favour of the legislation in the autumn, the system will come into force in 2020.

But the new rules will cover ony adults – not people aged under 18 – although children will still be able to express a wish to become an organ donor.

The move follows similar legislation introduced in Wales in 2015. Scotland has also promised to introduce an opt-out law and Northern Ireland has expressed an interest in the idea.

Prejudice

RCN children and young people acute care forum member and consultant editor of Nursing Children and Young People Doreen Crawford says introduction of an opt-out law may lead to debate on organ donation for children and young people.

‘Any increase in public debate is a good thing and, where children and young people have made their views clear, parents may go along with them.

148

Children waiting for a transplant in March 2018

(NHS Blood and Transplant 2017-18)

‘At the least a more open approach could make medical people review their stance. Their own prejudice can and does inhibit progress.

‘It’s frustrating to see potentially great organs go to waste because parents were not asked.

‘They are not asked for a variety of reasons, some altruistic, including a desire not to make parents suffer more.’

Conversations

NHS blood and transplant interim director organ donation transplantation Anthony Clarkson says conversations on donation should be started with children early, and should involve specialist nurses for organ donation.

‘Our specialist nurses are usually invited by the unit caring for the child to support the family earlier in the child’s end of life process than they would for an adult patient.

‘Work to support the family and build discussions about end of life can take place over a number of days as the parents face the loss of their beloved child.’

Mr Clarkson agrees that the change in legislation will prompt more open debate about organ donation, adding that this is already going on.

‘All nurses should be prepared to have these conversations, wherever they work.

Decisions

‘We need people to discuss their organ donation decisions with their families and make clear that they would like to be organ donors.

‘Our research proves that the biggest impact on a family’s support for organ donation is the knowledge of what their loved one wanted, so that simple conversation is a sure way to increase the number of donations.’

Despite the record number of organ donations last year, an increase is much needed.

57

Children donated organs last year

(NHS Blood and Transplant 2017-18)

As with adults, there is still a shortage of children’s organs available for transplant .

Latest figures show there are just under 150 children waiting for a transplant, but that only 57 children donated organs in the past year.

While many children can receive some organs such as kidneys or livers from adults, they cannot receive organs such as hearts and lungs for which organ size is crucial.

Challenges

RCN professional lead for children young people Fiona Smith says children’s nurses are fully aware of the challenges involved.

‘Specialist nurses often encourage parents to have discussions about organ donation with young people when appropriate, including when it is mentioned on the news or at school, or when family member needs a transplant.

‘School nurses are also in a position to address any questions teachers, parents and carers have.’

But other factors influence families’ decisions to agree or not to agree to organ donation.

The UK has one of the highest family refusal rates in the western world – four in ten families do not give consent.

An article published by Nursing Children and Young People last year found that families’ decision-making is affected by their satisfaction with care, and the information and emotional support they received as part of that care.

Training

RCN Emergency Care Association member Justin Walford understand this finding.

17, 000

Responses to the government consultation on the alternate law – a record

(Department of Health and Social Care 2018)

He says situations in which the isssue of a child’s donation of organs is raised is particularly ‘difficult and emotional’ for the families involved.

He believes that all staff – certainly those in an emergency settings – need training in organ donation issues.

‘We try not to have these discussions in emergency departments. They are best held in intensive care by the specialist organ donation team.

‘But sometimes this is impossible and we have to be prepared. If you have some experience and training, it is obviously easier.

‘I would like to see the training become mandatory so that all nurses are prepared for these conversations.’

 

The child who inspired the change in the law

Max Johnson
Max Johnson
Picture: Mirrorpix

The new opt-out law in England has been dubbed ‘Max’s Law’ after the boy who inspired ministers to push for change.

Max Johnson had a heart transplant last year, aged nine, after a high-profile campaign by the Daily Mirror newspaper highlighted his agonising wait.

He needed a transplant because he had enlarged heart.

Max, from Cheshire, eventually had the life-saving surgery in August at the Freeman Hospital in Newcastle.

The donor was a nine-year-old girl who had died in a car accident.

Prime minister Theresa May said Max’s plight convinced her to act, calling him a ‘very brave young man’.

‘Our NHS is world-class, yet people are still dying every day because of the shortage of organ donors.

‘This is why we want to increase donation rate and make it easier for everyone to record their wishes, whatever their preference.’

 

Role of the specialist nurse for organ donation

Angela Ditchfield
Angela Ditchfield

Angela Ditchfield is one of the specialist nurses for organ donation in the North West, one of 12 regional teams covering England and Wales.

The role involves being on call to accept referrals from doctors and nurses in emergency departments, and intensive care settings.

It also involves training staff in organ donation.

‘We help staff identify which patients are suitable for organ donation,’ Ms Ditchfield says.

‘For children, we tend to get involved at an earlier stage than we do for adults.

‘We would normally discuss the issue of organ donation first with the patient and their family.

‘Sometimes, this isn’t possible – we may be an hour or two away, in which case the staff with the patient have that discussion.

‘We then organise and facilitate the next steps. These involve blood tests so we can identify good matches for the transplants and organising the specialist retrieval teams to perform the operation.

‘We then prepare the body for the family afterwards.

‘If families want us to, we help keep the donors and recipients in touch. It really depends what they both want.

‘We will support families throughout and will write to them to let them know how the recipients are doing after their transplant.’

 

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