Life and death decisions

Melanie Selby with brother Jared, pronounced braindead after being hit by a car. Photo / Supplied

As organ transplant technology advances down the road of stem cell and embryonic research on the one hand, and xenotransplantation (the use of animal parts) on the other, hundreds of New Zealanders wait for organs the old-fashioned way.

They wait because New Zealand has a low rate of organ donation.

One of the main reasons the rate is so low is because just dying does not make you a suitable donor, even if you have indicated your willingness to donate.

You must be brain-dead and your body kept ventilated in hospital. Your family is then left to both say goodbye and make the final decision to let your organs save someone else.

Whether you are a recipient or from a donor family, the process is traumatic and emotional.

For Maori, a range of beliefs about the body as tapu have to be considered.

Here, Catherine Masters takes a look at two perspectives: Carol Robinson, a Maori woman who received a heart transplant and spoke movingly at a seminar in Wellington on the future of organ and tissue donation.

And Melanie Selby, a young Pakeha woman whose brother was fatally hit by a car in 2003 and who donated his organs so others might live.

THE GIFT OF LIFE

Imagine your beloved, strong, healthy brother was unexpectedly, tragically hit by a distracted driver as he walked along the footpath in the sunshine with his girlfriend.

You were in Scotland on your big OE and you got a message from your dad.

"Melanie, you'd better come home."

But Jared was already brain dead. When Melanie Selby got home her family made the harrowing decision to switch off his life support and donate his organs, as he had indicated were his wishes on his driver's licence.

He saved other lives, says Selby, but his death more than six years ago still hits so hard.

Life has changed irrevocably. Where there were two siblings, now there is one.

Selby works for Organ Donation New Zealand as a communications adviser with the job of dispelling myths about donation and raising awareness.

She gets annoyed sometimes at some of the stories she reads or hears, where New Zealand's low organ donor rate is hammered and cultural reasons blamed.

New Zealand's rate is about the same as Australia's - and Maori and Pacific people do donate, she says.

The main reason the rate is low, she says, is because fewer than 1 per cent of people die in the right circumstances that they are suitable to donate.

Her brother Jared was one of them.

He was only 22, just 10 days shy of his 23rd birthday.

He had twice been to East Timor and had made a will because he was a soldier.

She hadn't known he stipulated burial over cremation.

You find these things out in tragic circumstances, so talk about them beforehand, says the articulate young woman who somehow holds it together for this interview.

The panel who interviewed her for her job were a bit concerned about how she would cope in this role so close to home, but as she said to them she thinks about her brother every day anyway, so being able to talk to other families and raise awareness is good for her too.

She doesn't mind telling her story, over and over if she has to, because she gets to talk about Jared.

"While it's hard, it means that people don't forget about him and I get to tell people about him."

He was kind and loyal and she misses him.

But she doesn't think he lives on in those people whose lives he saved, through his heart, liver, kidneys and corneas.

She respects those who may think such things but Jared is dead, she says.

"Sure, his organs are still working but in someone else's body. It must be hard for people who do think they live on and that's why the confidentiality is so important, because you're just grieving so much and everyone grieves differently.

"Hearing stories like that must be really painful for some donor families and must make them want to meet, and that's a lot of pressure on recipients as well."

Donor families and recipients can communicate through Organ Donation New Zealand, however.

You are told who has received the organs, just bare details such as a man in his 60s, a teenage girl, that sort of thing.

And you can write to each other. Her mum wrote to all the recipients and told them a little bit about Jared - that he was in his 20s and in the army and had a beautiful girlfriend (who was badly injured, but survived).

The recipients of his heart, liver and one of his kidneys wrote back, but her mum's a bit devastated not to have heard from the others, says Selby.

"She doesn't want 'oh, thank you so much, your family's so amazing'. She just wants to hear about them and what they do and how they're going and that sort of thing."

Her brother's death was so avoidable, she says.

The woman driver had been trying to open a Coke bottle and had driven off the road on to the pavement.

Jared's head had gone through the windscreen.

He was brain dead and by the time she got home it was just his body that was being kept going on a machine in the hospital.

She says it's not widely known that such a small number of people can actually donate.

"You have to be ventilated in an ICU and you have to be brain dead - and they're the only conditions in which you can donate, so if you die on the side of the road you can't donate your organs."

She wants people to know the respect that health professionals have for the donor.

Sometimes people are anxious about donating because of the way the body may look, or they fear that perhaps the doctors won't try so hard to save them if they have said they are willing to donate.

Not remotely true, says Selby.

The hospital staff do their utmost to save lives and the process itself of removing the organs is gentle and respectful.

The theatre is blessed beforehand and the incisions are discreet.

Jared still came home the next day to be farewelled by his family.

Another myth out there, she says, is that families overrule your wishes to donate. While it is true they can, this very rarely happens.

Families are extraordinarily generous in the face of such trauma, pain and shock. It's difficult, too, because when bodies are ventilated they look like they are breathing.

They're not; it's just the machine. But Jared looked as if he was breathing and his body was warm. "He just looked like he was sleeping. It must be so hard... well, it is hard. I could never pass judgement for other people who couldn't follow through with it."

But these are all reasons why it so important to have these discussions.

Talk about it around the dinner table, she says, with your parents and grandparents and with your children.

She tells a story about a woman she knows, a donor mum whose little boy was killed by a car when he was seven.

The boy had wanted to be a donor and his mother respected his wishes.

"She said two months or a month before he died he'd seen donor on a driver's licence and he said 'what does that mean?'

"She said 'it means if I die and I can donate my organs I will' and he said 'that sounds so cool, that's exactly what I want to do if that happens to me'."

Of course, says Selby, it would be so hard hearing your child say that and so easy to tell them not to worry, it would not happen to them. "But it did and they'd had that conversation so when she was approached she said, 'yes, of course. That's exactly what he wanted."'

DONOR

PER MILLION

POPULATION,

2007

Spain: 34.3

Belgium: 28

France: 24.7

USA: 24.6

Czech Republic: 21.1

Italy: 20.9

Ireland: 20.2

Norway: 19.9

Finland: 17.2

Germany: 16

Hungary: 15

Canada: 14.8

Sweden: 14.5

Denmark: 13.2

Britain: 13.2

Australia: 9.4

Poland: 9.2

New Zealand: 9

Greece: 5.8

(New Zealand's rate is among the lowest of industrialised countries. Spain however, which has a high rate, uses methods we may consider coercive, such as asking a priest to convince families to donate.)

SOURCE: Organ Donation New Zealand

A CHANGE OF HEART

Carol Robinson has someone else's heart beating inside her.

The mother of four and nana of eight had gone to the doctor with a sore throat. Instead of an infection, the doctor found an irregular heartbeat and sent her to a cardiologist.

After some initial treatment she was diagnosed with heart failure. Her only hope, she was told, was to have a heart transplant.

Robinson, of Ngati Maniapoto descent, spoke movingly this week about her journey from near death to full life once again. She was one of the speakers at a seminar on New Zealand's low organ donor rate.

She recounted that when she first went to Greenlane Clinical Centre's "Hearty Towers" for assessment and treatment she had to answer questions she had never thought about.

"Questions like how would I feel about receiving a heart from a Chinese or from a European donor, or from a Catholic or a Muslim donor?," the 56-year-old said.

"It didn't matter to me, I just wanted to live. "

Later on, she remembers lying in bed thinking "whoa, I could die soon."

It was a sombre, melancholy feeling.

One day, after suffering headaches for several days, she was admitted to Auckland City Hospital and was told she was on the list for a donor heart.

But hours later she was told she had a bleed in her head and would need an operation. She was off the list.

After a while Robinson wanted to be back on the transplant list. Life can get pretty boring when everything has changed, she said.

"I couldn't work anymore. You can only take so much of watching soap operas and lying on the couch doing nothing and I thought 'jeez , how dumb is that, I'm bored - I'm bored, waiting to die."'

One Wednesday she got the call she had been waiting for. A heart might be available so get ready.

"It was the 31st of August, 2006, and that would be the last day of my old life and possibly the beginning of my new one, with someone else's heart. I wasn't scared at all, I was just blank."

As Robinson was being wheeled down the corridor into the operating room for her transplant, it suddenly hit her that she must be very, very sick.

"That my heart must be no good, 'cause they're going to cut it out of me and put another one there."

She also thought about someone else having to say goodbye to their loved one.

In intensive care - and whether this was spirituality or whether it was morphine, she doesn't know - she remembers hearing something like a huge engine shutting down and then something starting up again.

She remembers seeing two beautiful diamond shaped and tubes, one of pure black and the other of pure white, sparkling and stunningly beautiful.

Her thoughts at that stage were with her donor, but later she realised it was the donor family her gratitude should be with because without their permission she would be dead.

"This feeling of gratitude was also a major factor in my recovery. I wasn't going to let all their time, efforts and taxpayer money go to waste and so I tried really hard and listened and did all I needed to do in order to get well."

She remembers when she first sat up she got a fright hearing her new heart beating in her ear, and it occurred to her the old heart had become so weak she had hardly heard it any more.

"A feeling of loneliness and aroha for my old heart overcame me and I felt really sad. I felt disloyal, as though this new heart was more important now than my old one, like when someone finds a new mate the old mates don't matter any more, you go off with your new mate."

The reality was this new heart was a precious gift, a taonga.

"To me as a Maori, taonga is a really special word. It's more than a gift, it's a very powerful word but even this wasn't enough to describe my gratitude to my donor."

She thought about all sorts of things in hospital while recuperating - that she must have died when they took her old heart out and before they restarted the new one. She thought about what a soul was and whether she still had one - or did she have two now?

And if the new heart was a Maori heart, she wondered what that meant - did it make her part of her donor's tribe?

She thought about her old heart and realised she was grieving but she knew she wanted to take it home to rest with her old people, her ancestors.

Initially, she left her heart at the hospital then found a need to ask people to drive her past the hospital so she could be close to it.

They had been together for 52 years and that heart had held on just long enough for her to live.

The night she collected her heart she slept next to it in the sitting room tangi-style, then took it to the cemetery, wrapped it in a family cloak and buried it on top of her mum.

It was like burying her whakapapa, she said, because that heart had pumped the blood of generations and needed to be treated with respect.

Robinson's younger sister Meri Ormsby also spoke at the seminar - heart transplants are a family affair and Ormsby took on the main caregiving role for Robinson while she was ill.

They are in the process of educating their whanau about organ donation, she said, and raising some interesting questions.

Because whakapapa (genealogy) is a huge part of Maoridom, she said some of the questions they pose on the marae and at huis are about pregnancy post-heart transplant.

"Does that mean the baby becomes part of the donor genealogy? 'Cause without the donor heart, the baby wouldn't exist.

"Or would we look at this as a privilege and consider the baby a taonga or gift in respect to the donor family. The most precious gift, I'd say, to the donor family.

"Relationships to the recipient of the same donor - like if Carol got the heart, another got the lungs, another got the corneas, whatever part, the question is - do they now share the same genealogy?"

Ormsby told how a woman at Hearty House had taken her husband's lungs home and buried them under a rose bush but when her husband died she had moved out of the house. Should people know there are human remains there, Ormsby asked, and what would you do if you found them?

And what happens on the recipient's death - do you give the organ back? "If I donate a heart and the recipient dies can my children say I want my mother's heart back?"

KIWIS WAITING FOR ORGANS

* 3 for a pancreas

* 7 for hearts

* 3 for lungs

* 12 for livers

* about 500 for kidneys

* There are others waiting for heart valves, corneal transplants and for skin