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Offline Clark

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"This makes me want to scream."
« on: October 17, 2011, 01:05:04 PM »

Did his organs have to go to waste?
When Penny Wark's brother died last year, her family did not hesitate to donate his organs. Despite the trauma, she thinks it was the right decision - but says grieving relatives must be treated with more care
By Penny Wark

It is important to say that I am unequivocally in favour of organ donation. It saves lives. It restores sight. As the relative of someone who is about to die, why wouldn’t you want to help fellow human beings? Morally and ethically, I am sure it is the right thing to do.

I believed this before my brother, Philip, died last year, before we agreed that his organs should be made available for donation, and my view has not changed. Yet when organ donation is promoted, there often seems to be a self-appointed “sensitive soul” hovering in attendance uttering words like “source of comfort”.

This makes me want to scream. I am delighted and moved by the knowledge that two people can see because they received my brother’s corneas, but their good fortune does nothing to ease the loss of a man who was much loved. If you are contemplating a feel-good emotional return on your relative’s organ donation, you will be disappointed. That’s not how it works.

Or perhaps you like the idea of a free funeral in return for your generosity, as the Nuffield Council on Bioethics suggested last week. This makes me equally uncomfortable, because putting organ donation and money in the same sentence is plain creepy. Even when 10,000 people need an organ transplant and every day three of them die. Even when the NHS is so desperate for organs they will contemplate transplanting the heart and lungs of a smoker. This has happened, and almost happened again in the case of my brother, who smoked: his heart and lungs were offered for donation, accepted and then declined before his death. “There are a lot of desperate people out there,” the hospital’s transplant co-ordinator told me as we waited for Philip to die.

Over the past three years in Britain, organ donation from the deceased has risen by 26 per cent. Last year, 3,740 transplants were carried out across the country, the most ever thanks to the generosity of 2,055 donors and their families. Consent rates for organ donation following brain death have risen to 65 per cent. Yet while the supply of organs is increasing, so is the demand, fuelled by an increase in diabetes, medical advances and the ageing population.

One solution lies in persuading the public to think about the issue before they are confronted with it, and altruism doesn’t seem to be enough: while 77 per cent of people say they would like to donate, only 30 per cent are registered to do so. This is why we must talk about it, says Sue Burton, a costs lawyer from Grantham, whose 16-year-old son Martin died suddenly from a brain haemorrhage in August 2003.

“I didn’t hesitate to say yes but I felt that we were put on the spot. I want other families to be aware – people refuse because they haven’t given it enough thought. Martin’s heart went to a 15-year-old boy and his liver went to a young man with a family. Martin was going to die anyway, and I’m glad we were able to make the gifts. But only if people are educated about organ donation will it become routine.”

It is in that spirit of transparency that I tell my brother’s story. Philip was 50 when he was admitted to hospital in Taunton. He was a maverick, prodigiously bright, fiendishly well-read and one of those people who never fitted in. He’d been a milkman and a security guard, but by May last year, gripped by the alcoholism that made him shuffle instead of walk, he was unemployed and unhappy. By the time I reached his bedside, he was in a coma. I had expected his alcoholism to kill him, yet I had never stopped willing him to recover. It was a shock.

Eight days later, my family crammed into a tiny room set aside for relatives of patients in the intensive care unit. My parents were there, my mother with an unfeasibly large pack of tissues which she handed round with remarkable energy for an old lady with a dicky heart, and my brother’s wife and their six children squashed in, too. The doctor’s news was grim. Philip’s liver showed no signs of recovery, we were told, and the kindest thing to do was to withdraw the equipment that was keeping him alive and allow him to die.

Would we consider organ donation? This would involve waiting for the retrieval team to travel from Birmingham to Somerset. Only then, when an operating theatre was ready to receive Philip, would life support be switched off. He was likely to die within two hours and organ retrieval surgery would take place within minutes. We could change our minds right up to the moment they were taking him to theatre. We didn’t hesitate to give permission.

It was 4.30pm on a Thursday and the transplant co-ordinator, an experienced nurse who had just the right combination of tact, sympathy and can-do, made calls to gather the team and find recipients. No one would want Philip’s liver, but his heart and lungs were made available and his kidneys could be used provided he died within two hours of coming off life support. His heart valves and corneas could also be retrieved and would save life and sight respectively.

She also made inquiries about Philip’s sexual history and any drug-taking, issues that can indicate whether a patient might be HIV positive. Retrieval was expected to go ahead, and as the evening sunshine poured into the waiting room, my parents and I and my brother’s oldest daughter sat and talked, aware of a clock with a loud tick.

We visited Philip; his hands were warm. Our world was very small because that was how we wanted it. Nothing else filtered in except the distant knowledge that two other families were waiting to receive Philip’s kidneys. We wished them well. As Philip would have said, the organs were no use to him. He would have been amused that his rackety body still had some mileage in it.

The team arrived at 11pm – they tried to keep out of the way but we caught glimpses of them. Mum said it was like waiting for an execution. I thought it was surreal. After a week in this room we were exhausted, focused on Philip’s prone body, on what might have been, on the son and brother who, we knew, had reached unfathomable levels of despair.

“He made his choice a long time ago,” said Mum. I looked at her. How could she be so strong?

“Every time I go in to see him I want him to live more,” said Dad, “but my emotions don’t matter. What matters is what’s best for Philip.”

It was all unbearable, but if there was a moment of acute pain it was watching Dad, an emotionally reticent man, stroke his son’s cheek. The memory of that tender gesture still makes me weep uncontrollably.

Life support was switched off at around midnight and Philip looked calmer without the intrusive tubes. We said our goodbyes slowly and carefully and returned to the waiting room. His heart was very strong, we were told an hour later. “Can I have it?” asked Mum. The transplant co-ordinator brought us blankets and we hunkered down on the seats.

Philip didn’t die that night. We left the hospital at 4am, as did the retrieval team because it was now too late to take his kidneys. Bloody-minded to the end, he hadn’t died in time. When I got back to his house I couldn’t park and drove around the silent streets for 15 minutes. I walked the last half mile, sobbing with frustration and grief.

Philip died at 2am on Saturday. We were told that heart valves need to be taken within 48 hours of death and that no pathologist had been available. The tissue that could have helped two children was cremated. When, a few weeks later, we received letters saying that two people in Bristol had received Philip’s corneas, this was some compensation for the disappointment we’d felt about the failure to retrieve his heart valves.

If a medical system asks relatives to allow death to be postponed in the interests of organ donation, surely that system has an emotional responsibility towards those relatives? That should include ensuring that organ donation is maximised. The waiting list isn’t just down to a lack of awareness about these complex procedures; doctors play a part, too. We had volunteered for what became an agonisingly long night. Would it be too much to ask that doctors staff this service on an on-call basis, perhaps as volunteers themselves?

David Nix, a former police officer who runs a business in Birmingham, also chairs the Donor Family Network, wryly pointing out that this is a club no one wants to join. In 1996, Rebecca, his daughter, died in a road accident in Connecticut at the age of 21; her organs were used to help 74 people. “That’s her legacy,” Nix says. “My daughter had told me she would want to donate, so I was able to tell the hospital in America.

“Asking families about organ donation should be mandatory, yet there are still British hospitals where the question isn’t put. We’ve got to get the infrastructure right – it is scandalous to know there are people who could have had a better quality of life and weren’t offered it. The good that can be done is infinite – but there is still a long way to go.”
Unrelated directed kidney donor in 2003, recipient and I both well.
580 time blood and platelet donor since 1976 and still giving!
Elected to the OPTN/UNOS Boards of Directors & Executive, Kidney Transplantation, and Ad Hoc Public Solicitation of Organ Donors Committees, 2005-2011
Proud grandpa!


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