Organ donation is always a difficult topic. Graeme Hetherington hears how one NHS trust broaches the subject.

WE’RE living in an age with very few taboo subjects. Even death is more openly discussed but remains an uncomfortable subject even when, or possibly especially when, the discussion is with loved ones and family members.

One of the consequences of this is that if the unthinkable happens our loved ones can be left to make decisions on our behalf as well as coping with their loss.

Only around one per cent of deaths occur in circumstances where organ donation is possible and at County Durham and Darlington NHS Foundation Trust, Lisa Adair, specialist nurse for organ donation and former intensive care sister, provides expertise to colleagues and families so that, when appropriate, families are approached to discuss the possibility of organ donation.

She says: “First and foremost, the role of doctors and nurses is to save lives. They do everything they can to save their patient. It is only when there is nothing more they can do, and end of life planning begins, that the possibility of organ donation is raised with the family.

“It’s incredibly important that we have these conversations, both for those patients who are waiting for transplant but also for the families of potential donors.

“Around 6,000 people are currently waiting for a transplant and three people in need of a transplant die every day. At the same time, many donor families say that doing something so positive gives them comfort and hope at what is otherwise a tragic time.

“In the three years I’ve been with the Trust I’ve worked closely with our intensive care teams at University Hospital of North Durham and Darlington Memorial Hospital. In particular, encouraging them to let me know when they have a potential donor and the good that can come out of organ donation. I run study days, giving colleagues a chance to hear first-hand from a donor family who comes to speak about their experience. They explain how they understood nothing more could be done for their loved one and the comfort they took from donation. They also hear from someone whose life was saved by a transplant.

“It’s important I get involved early so I can check the patient’s medical records and sometimes seek advice from the transplant teams and we now have a second specialist nurse for organ donation, Francesca Herrera Lee.

“The Trust was recently highlighted by a NHS Blood and Transplant Northern Region report as ‘exceptional’. This came as a result of the potential organ donor referrals we make to them and in recognition of the effectiveness of the partnership we have with medical teams in approaching families to discuss organ donation.”

The report noted that at County Durham and Darlington NHS Foundation Trust, there wasn’t a single missed opportunity to offer and explore organ donation in appropriate end-of-life care situations between April 2018 and March 2019. In that year the Trust had 12 whole organ donors, which enabled 30 people to receive life changing transplants.

The specialist nurse adds: “A single donor can save or transform the lives of up to nine people. In addition to major organ donations such as the heart and lungs, a donated cornea can help someone see again, a replacement heart valve can treat a heart defect and tissue transplants can also significantly improve a person’s quality of life. Donated skin can transform the life of someone with severe burns. Science is constantly expanding the boundaries of what is possible.

“When there’s agreement to go ahead, I register the organs for donation and the organ donation team look at placing them. I then stay with the patient and their family until the patient is taken to theatre, when a specialist regional retrieval team attends. We always stay with the donor and their family through the whole journey from the decision to donate, during and after the theatre process. and supporting them throughout the process.”

People are encouraged to join the organ donor register, however, in Spring 2020, the law around organ donation will change from an ‘opt in’ to an ‘opt out’ system. From then, all adults in England will be considered to have agreed to be an organ and tissue donor when they die unless they record a decision not to donate or are in an excluded group.

She continues: “When the change in law is implemented, the family of a potential donor will still always be approached to discuss organ and tissue donation and their wishes will still be respected – so with the ‘opt out’ system, it will still be really important to tell those closest to us what our wishes are."

Gordon Harrison was an hour away from having a double-lung transplant when the surgery was cancelled as despite the potential donor being on the register, their family chose not to consent. Fortunately for Gordon, another donor was identified.

He was diagnosed with idiopathic pulmonary fibrosis in 2012, when he was 55, which carries a five year average life expectancy. Without the double lung transplant he had in 2017, doctors told Gordon he would have died within a month. “I was filled with relief when the call about the transplant came," he says. "I was so ill I had to be carried to the ambulance. Life now is fabulous, I get enormous joy in the ordinary day to day things and am able to live a very full and active life, just as I did before I became ill.”

To register visit organdonation.nhs.uk