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Organ donation: Faces at the front line

By Susan Edmunds
Sunday Jul 26, 2015
New Zealand has one of the developed world’s lowest organ donation rates, sparking concerns more must be done to save lives. In this series Susan Edmunds explores the importance of having a life-giving conversation with your loved ones
Dr Emma Merry can still remember how nervous she felt the first time she spoke to a grieving family about the possibility of donating their loved one's organs.
"My heart was racing, I knew it was important to get it right. But as with all those things, you worry about it and you try hard to make sure you do everything right, but in the end you needn't have worried about it because everything goes well. I think the hardest part that first time was opening my mouth and saying the things I needed to say."
Merry, an intensive care specialist at Hawkes Bay Hospital, and others like her have a crucial role to play in organ donation. It is only possible for people who die in specific circumstances in intensive care units to be organ donors. The staff are responsible for talking with family members who will decide whether to allow the operation to occur.
Patients are only candidates for organ donation after brain death, while the heart is still beating and blood is circulating or - more rarely - after circulatory death, when it is determined that ventilation should be withdrawn because ongoing treatment is not in the patient's best interest.
"About half a per cent of all deaths are suitable," Merry says. "It's tiny. You have to be in an intensive care unit and you have to be significantly damaged in your brain and dependent on a breathing machine to even be eligible to be tested."
Last year, there were just three such cases in Merry's unit.
New Zealand has one of the developed world's lowest organ donation rates and the Government has ordered two reviews to see if it can be improved.
One of the key aspects of the reviews is the family's right to overrule the wishes indicated on the driving licence of their loved one, which is not deemed consent under the law.
Merry is at the system's frontline - one of the doctors faced with an incredibly sensitive conversation with a grieving family.
The 46-year-old says it is not uncommon for a patient's family to raise the issue first. 
"We can go into a room expecting to have a progress-type meeting with the family and someone will say 'what about organ donation, doctor?'
"They may have experience of it in the family or they may have read something. Sometimes they raise it entirely appropriately but we have also had families who have raised it for patients who could not go on to be donors."
If the family does not raise it, Merry tries to approach the idea in a gentle way. "I might say, 'so sometimes in this situation families ask me about organ donation'. I observe the reaction and see what people say. Depending on their response we go in whichever direction they want to go. I can give them information and more time."
Merry cannot remember dealing with a family who completely discounted organ donation.
"Often they have not thought about it. There is a lack of understanding and information. Sometimes they have thought about it and they know their relative lying in the intensive care unit has thought about it and talked with them so there is already a standpoint or perspective that exists.
"Families will say, 'Oh yes, he always wanted to be a donor'. Sometimes they will say, 'We haven't thought about it but come to think of it he is a really positive and giving person and he would probably want to'. Then they need more time to think about it."
Some families need to get away from the whirr of technology in the hospital to a space where they can get a clearer perspective. Some mull it over for a long time and others come back within 10 minutes.
Once the question is raised and the family agrees, organ retrieval can happen quickly.
When brain death is suspected, two separate international-standard tests must be done within hours of each other to determine whether someone is a candidate for donation. If both tests diagnose brain death, the time of the second test's result is recorded as the patient's time of death.
"We try to keep it to a tight timeframe for families," Merry says. "This is the worst day in their lives. Someone they love and may have only seen that morning on the way to school or work will never come back to them. That's horrific. We try as best we can to make things as streamlined and smooth as possible."
Organ retrieval teams travel to the intensive care unit to perform the operation, co-ordinated by Organ Donation NZ. Many organs and tissues can be donated but only those the family agrees to are taken.
As well as giving the donor recipients a new chance at life, Merry says the grieving families often seem to benefit from the process, too.
"Families feel they are honouring the person who has died, especially if they have been a staunch believer in donation or they have been an altruistic person.
"That is satisfying for them. Some people say they also felt that someone has gained out of that tragedy and loss. It's a positive that has come out of a negative."
For some it provides a sort of closure. Brain death is such a final diagnosis that it rules a line under the question of what will happen to a person. Merry says that seems to come as a relief to some families who feared their loved ones would be left in a debilitated state.
Although the focus is always on the grieving family, Merry says dealing with these situations takes a toll on the intensive care staff too.
"For the nurses looking after the patient, it is taxing and stressful. They too feel a huge sense of achievement that they have helped the person and the family through this."
Young people in the dark over licences
Better education about organ donation for young adults could help lift New Zealand's rate, new research shows. An Otago University study survey of students aged 19-25 found few young people understood the role the driver licence plays in organ donation.
When someone applies for a licence, they are asked whether they would be willing to be an organ donor. Almost one in five students thought that was sufficient to allow donation to happen if they die.
Fewer than a quarter knew the importance of family consent, irrespective of what is stated on a driver licence.
They also did not understand how rare it was for donation to be medically possible, or the significant need for organs. Just 12 per cent knew that donation was medically feasible in less than 5 per cent of deaths.
Almost 80 per cent said they would expect to be asked for consent for a loved one's organs to be donated, and more than 90 per cent said the most important consideration was whether the individual had stated a wish to donate. More than half said they would still donate a family member's organs if the person had not made their wishes clear.
Lead researcher Jon Cornwall said there was little information about how the conversations between clinicians and grieving families should take place. The results supported offering families information and fully involving them in the decision.
Between 2008 and 2014, only 31-46 people donated organs each year in New Zealand.
Our donation consent rate is about 50 per cent, compared with Australia's 60 per cent.
Cornwall said the research showed there was a need to talk to young people about organ donation, explaining processes, consent issues and what is involved.
"Findings are important in relation to the future of organ donation in New Zealand as young adults who are knowledgeable are likely to serve as advocates for increasing the awareness and knowledge of others in the community."
Sunlight is thrown through the huge rectangle of glass in the high front wall of the cathedral, illuminating the aisle. A third of the pews are full but many of the congregation shift uncomfortably. They study the service programme intently but will rely on the Very Reverend Digby Wilkinson to remind them when they are expected to stand and sit, to sing and to pray.
Most are not regular church-goers - but this is not a regular service. Each year, Organ Donation New Zealand holds thanksgiving services in Auckland, Dunedin and Wellington, in recognition of those who have donated organs to allow others to live. This Wellington service is the last of the three this year.
Some of the congregation are recipients, struggling with the enormity of the thanks they want to give. Others are families of deceased donors - people who would give anything to have their mother, daughter, son or father back but instead are left accepting bittersweet thanks on their behalf.
After the choir files in and an opening hymn is sung, Jaime Bigwood walks to the pulpit. She tells the story of her mother's catastrophic brain bleed - the news delivered to her as she was on her morning commute in London. The long flight home, the days spent in hospital, pacing the floors, the decision to turn off the life support.
Bigwood's mother's organs were given to six recipients, a small consolation as she battled to cope with her loss. She has a message for the recipient families: "Don't feel bad for us. Live. Not because you feel you should honour the deceased or the donor family but because life is for living."
The next speaker is kidney transplant recipient Paddy Smith. He says he has been given the most important gift of time; a social life, time with his three daughters, his first holiday in three years.
He wants donor families to know it is not just the recipient who benefits from a donation but all who live with, work with, befriend and do business with that person - hundreds of people.
"You give us life, a second chance. I'm going to live a life worthy of this kidney, life with a positive, full-on attitude."
Soon, transplant recipients are invited to come forward and light a candle. As they do, the St Paul's Choir sing. Renal doctor Philip Matheson addresses the service.
He talks about Gallipoli, heroism, sacrifice. Everyday people doing extraordinary things. Living donors and the families of the deceased donate because they hope - but not expect - that others would do the same for them.
Like the soldiers at Gallipoli, many waiting for a transplant merely want life to return to normal.
"When you're in the middle of grief or suffering, normal life is truly beautiful. Organ donation gives ordinary people the opportunity to live normal lives and I'm struck by what an extraordinary opportunity that is."
Families of those who have donated organs receive a young camellia plant, variety name Donation, wrapped in pink tissue and ribbon, encased in a black box.
They move slowly up the aisle, some requiring more encouragement than others to rise from their seat.
One man puts his arm around his wife's shoulder as she struggles to control tears.
Soon, a handful of tentatively bobbing green leaves can be seen in between the shoulders of those who have returned to their places among the pews.
Wilkinson closes the service with a blessing: "Go forth with passion for living and loving; with courage to dare and to hope; with freedom to grow and to change; with the will to give and grace to receive; with humility to learn; with tenderness to understand; with strength to endure, with trust to believe."
The choir traipses out and the congregation follows.
Some will stay for lunch and a cup of tea but most leave the cathedral and emerge blinking into the sunshine.
The crowd quickly disperses - a couple of hundred people living an ordinary, yet extraordinary, existence that an accident of circumstance has given them.
Find out more
• Organ Donation NZ 0800 436 667 
• Australia/New Zealand Donor Registry
• Transplantation Society of Australia/New Zealand
- Herald on Sunday

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