Organ donor funeral expenses call

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11 October 2011 Last updated at 08:21 GMT By James Gallagher Health reporter, BBC News Transplant surgeon Keith Rigg: "There are nearly 8,000 people waiting for a transplant in the UK"

Patients who donate their organs should have their funeral expenses paid for by the NHS, according to a leading ethics body.

The Nuffield Council of Bioethics report said the move could lead to more people donating their organs.

However, it ruled out directly paying donors for their organs.

The government will consider the recommendations but said donating should be "free from any financial consideration".

Keith Rigg, a transplant surgeon from Nottingham University Hospitals NHS Trust and one of the report's authors, said: "There is a well-known shortage of organs."

One recommendation to boost the number of donors was to pay the funeral costs of people who join the Organ Donor Register and whose organs are transplanted.

Prof Marilyn Strathern, who chaired the inquiry, said: "The possibility of sparing relatives the financial burden of a funeral might encourage more people to register as donors."

Will it work?

However, Mr Rigg admitted that there was "no evidence for how effective" such a proposal would be and the report recommends a pilot scheme.

Mr Rigg said the very cheapest funerals cost about £1,500 and that any NHS payment "would be an offer of a reasonable amount".

Continue reading the main story 8,000 people are on the waiting list for a transplantOn average, three people die every day18 million, or one in three, people are on the Organ Donor RegisterThe NHS wants 25 million people to sign up by 2013Dr Kevin Gunning, a consultant at Addenbrooke's Hospital in Cambridge and a member of the Intensive Care Society, said: "It's not going to change a great deal about the way people think about organ donation.

"I'm not sure if I was signing up to the Organ Donor Register as a 25-year-old, the fact that my funeral expenses were going to be paid would make a great deal of difference to whether I signed up or not.

The authors said this was not a slippery slope towards payment for organs, which is illegal in the UK, as the donor would not benefit financially themselves.

Comparisons were drawn with medical schools paying funeral costs when a body was donated for research or training.

Prof Strathern said: "Altruism should continue to play a fundamental role."

The report also said more needed to be done to reduce demand for organs through measures to reduce obesity, diabetes and liver disease.

However, the report did not recommend an opt-out, or presumed consent, system in which everyone would be considered an organ donor, unless they explicitly objected.

Such a scheme is being considered by the Welsh government.

Double lung transplant recipient Emily Thackray: "Financial incentive not way forward"

However, the report said there was "uncertainty" about whether this would improve matters. It added that further studies should take place before the rest of the UK followed suit.

The British Medical Association said paying funeral costs was "an interesting idea," but "still believes that one of the best ways to increase organ donation is to move to an opt-out system with safeguards."

Egg and sperm

The report's authors said half of fertility clinics had a shortage of sperm and almost all had a shortage of eggs.

It suggested lifting the £250 cap on expenses which currently leaves "some donors out of pocket".

The regulatory body, the Human Fertilisation and Embryology Authority, is due to announce the results of its public consultation next week.

A Department of Health spokesperson said: "Signing up to the Organ Donation Register is a selfless act that can save the lives of others.

"It is an independent personal decision that should be free from any financial consideration.

"We will consider the recommendations of the report with NHS Blood and Transplant and the Human Tissue Authority."

NHS Blood and Transplant said it welcomed debate over the matter.

It said in a statement: "This interest will help to increase awareness of the need for people to sign up to the Organ Donor register and discuss their wishes with their friends and families.

"Currently in the UK, organ donation operates according to the fundamental principle that organs/tissues are donated altruistically and it is illegal to receive a payment for supplying an organ.

"The legal, ethical and practical issues raised by these recommendations, will need careful consideration and evaluation."

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Should organ donors get free funerals?

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11 October 2011 Last updated at 15:45 GMT Many believe that organ donation should simply be about altruism Paying the funeral expenses of organ donors is a good idea - but safeguards are needed, argues ethicist Simon Rippon.

The Nuffield Council on Bioethics recommends that the NHS offers funeral expense payments to people who sign the organ donor register, on the condition that they later die in circumstances in which their organs can be donated to others.

This idea is to be warmly welcomed. By providing an additional incentive to people already inclined to sign the organ donor register, it could enable the NHS to provide faster and better treatment, and to save many more of the 1,000 people who die every year in Britain while waiting for an organ. It would also provide symbolic recognition of the priceless gift that organ donors give.

Is there anything ethically questionable about this life-saving proposal?

Well, many people think that organ donation should be a purely altruistic matter, and the Nuffield Council attempts to draw a fine line - recommending policies that may provide extra encouragement to those already inclined to donate for altruistic reasons, while strongly scrutinising proposals for introducing more significant incentives which might persuade people to donate who would not otherwise consider it.

Altruism is undoubtedly a good thing, and its role in motivating organ donations should not be underestimated. But enabling altruism should never trump saving lives.

What we should be concerned about when it comes to incentives for organ donation is not the purity of donors' motives, but the way that payments could facilitate coercion or exploitation of those in poverty.

Organ donation should be a fully free choice for each of us, and never an economically necessary one.

For this reason, it is important that organ donation never becomes the only way to pay for one's funeral. The government currently provides funeral payments from the Social Fund to those in poverty. It must continue to do so as a safeguard against coercion and exploitation, if funeral expenses for donors are introduced.

The Nuffield Council's report also considers moving to an "opt-out" system for deceased organ donation, under which it would be assumed that people consent to donation unless they either opt out before they die, or their family later objects.

The council rightly does not oppose such a system on ethical grounds, because it would leave the choice of donation or non-donation entirely in the hands of individuals and their families, as it is now.

Some people object to an opt-out system on the basis that there will inevitably be a few people who fail to opt out and fail to inform their family of their wishes, even though they would not wish their organs to be used to help others - and these people may have their organs taken without consent.

But there's a straightforward reply, arising from the observation that the vast majority of the public support organ donation, though few get around to signing the donor register.

Under the current, opt-in system, there are many more people who fail to sign the donor register and fail to inform their family of their wishes, even though they would wish to help others with the gift of their organs, and these people's organs may go pointlessly to waste without their consent.

If we wish to fulfil the wishes of the most deceased people, then, the default for those who do not express their wishes should be for them to be available to donate.

Nevertheless, the Nuffield Council raises concerns about the practical effects of a change to opt-out - worrying that it might not substantially increase donation rates, and might even reduce the number of donors by prompting vocal opposition.

My view is that the British public is a bit more sensible than the council gives credit for here, and that an opt-out system would produce substantially more donor organs from among those who mean to sign the donor register "when they get around to it".

Nevertheless, the Welsh Assembly looks set to change the system in Wales to opt-out, and the report notes that this provides a rich opportunity for robust research into the likely effects it would have across Britain. If it's not yet ready to act on opt-out, the government should make this research an urgent priority.

Simon Rippon is a Research Fellow at the University of Oxford's Uehiro Centre for Practical Ethics. He writes regularly on ethical issues at the centre's blog: Practical Ethics

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What happens during organ donation?

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4 October 2011 Last updated at 02:30 GMT Abdominal retrieval surgeon Mansoor Madanur removed Penny's kidneys and liver There are more than 10,000 people in need of a transplant in Britain, and each day three people die because of the lack of donors. For the first time television cameras have followed the organ transplant process right from when the decision is made to donate, until the recipients are recovering.

Penny was brought into St George's hospital in London after suffering a brain haemorrhage.

"At first she thought it was just a headache, minutes later she was screaming in pain," explained her husband Cyril.

Ten days later Penny was declared brain stem dead, at 65.

Continue reading the main story

For the first time on UK television, the reality of multiple organ donation is shown in Transplant on BBC One, Tuesday 4 October, 22:35 BST

Of the 1,500 people who die each day in the UK, Penny was one of only three that were donors.

Penny's husband Cyril said she had always made it clear to her family that she wanted to donate her organs.

"She always believed that organs are lent to you in a strange sort of way and that if they can be used after death they have to be, there was no maybe as far as she was concerned, they had to be."

As this point, 40% of families usually decide not to donate, so specialist organ donation nurse Carol Wylie approached Cyril and his daughter Emma to make sure they would give the go-ahead.

Calls were then made using a nationwide database, and across the country people identified as potential recipients were called to hospital.

Daryl and her husband Alex travelled 200 miles from Devon to King's College Hospital in London. Alex is 52 and has been ill on and off for 20 years, with polycystic kidney disease.

Penny's daughter Emma and husband Cyril had spoken with her about her wishes to donate organs

"Although you prepare yourself for it, it's still a hell of a shock when that call comes, and you go through such a huge range of emotions," explained Daryl.

Alex had a failed kidney transplant last year, and needed a combined liver and kidney transplant.

"I feel totally tied up in knots in the inside," explained Daryl.

"I've got guilt because at the end of the day someone has died to make this possible and I've got fear that things won't work and that potentially I could lose him."

Quick decisions

Penny's heart was kept beating until her organs could be removed, but time was of the essence to remove them before they deteriorated.

Two surgeons were involved, a cardio thoracic specialist and an abdominal retrieval surgeon.

The specialist transplant team included Ruby Masden, a perfusionist, who looks after the preservation of the organs.

"It looks like any ordinary surgery, we try very much to respect the donor as much as possible," said Ruby.

"Treat the body with respect, but then... it is the beginning of so many other lives from this one life."

When organs are removed they are checked for signs of previously undetected disease or damage.

Penny's organs were found to be in good shape, and as the organs were delivered to three hospitals across the country via courier, ambulance and helicopter, Carol turned her attention back to Penny.

Continue reading the main story The first successful kidney transplant was in 1954. The first heart transplant took place in 1967 Only 29% of the population have joined the Organ Donor RegisterKidneys can be kept out of the body for up to 24 hours after removal, the longest of any organ, whilst the liver can last eight hours and the heart four hoursHearts can be donated by people aged 65 and under, but for kidneys, cornea and other tissue it is the person's physical condition, not age, which is the deciding factorSource: NHSShe performed last offices, where the body is cleaned and the hair is washed before being returned to the family.

"It's lovely and peaceful now and this is how it should be at this time. There is no mad rush you can take your time and do a good job."

Alex was the first recipient of Penny's donated organs. As he headed into the high risk operation there were tears, as it was the fourth time his wife had said goodbye to him before surgery.

Andreas Prachalias, the lead surgeon operating on Alex, said during every transplant operation there was a "key point".

"This is the most crucial moment, we're going to reperfuse the liver, that's the point that people may die sometimes," he said.

"This phase is called reperfusion where blood flows again through the vein's and arteries. It's a heart-stopping moment."

Penny's second kidney was taken to Hammersmith hospital where 66-year-old Michael had to wait a further four hours for cross-match tests.

His damaged kidney was not removed but Penny's was put into him by surgeon Vassilios Papalois.

"There and then you change somebody's life for ever and it happens in front of your eyes and you are part of it," he said.

"I don't think there is any other surgical speciality that can offer you this joy, a lot of stress I can tell you, but a lot of joy as well."

Michael's operation went well and after a month in hospital he was able to go home "very grateful", after being tied to the hospital and a dialysis machine for seven years.

'Edge of life'

Penny's heart was flown to Birmingham Queen Elizabeth hospital for the youngest recipient, 16-year-old Zoe.

She had fluid on her heart, which had become enlarged and was rapidly deteriorating.

Professor Robert Bonser explained she was on the "edge of life." Her mother had even planned her funeral.

Zoe's mother Tracey admitted she had planned Zoe's funeral before a donor was found

But within 24 hours of Zoe being prioritised on the urgent transplant list her family were informed that a suitable heart had become available.

"Many hearts we go to inspect of older donors will have developed coronary heart disease, and it could have happened in Zoe's case that we would have said no it's not safe to proceed," explained Prof Bonser.

"If that had happened in Zoe's case she would not still be with us."

While all the operations involving Penny's organs went well, some recipients can reject organs. Patients have to take drugs for the rest of their lives and 15% suffer some rejection in the first year.

Alex's last transplant failed because his body could not cope with the anti-rejection drugs. But this time his body coped well.

Zoe felt well but six weeks after the operation she showed signs of rejecting the heart.

Her mother Tracey admitted they had not expected any problems.

"I did think it was going to be a cure and this has shocked me, it's really frightening."

After a week back in hospital and a stronger dose of drugs Zoe was allowed home.

At the end of the process Penny's family received a letter about where her organs had gone and how the recipient patients were getting on.

They broke down as they read the letter from Carol Wylie.

"They shouldn't be thanking us," said Cyril through tears.

Daughter Emma was incredulous.

"To imagine they get a call and their life has changed over night, it's incredible."

Transplant is on BBC One, Tuesday 4 October, 22:35 BST.

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Organ law 'may deter donations'

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18 September 2011 Last updated at 07:40 GMT A total of 195 people received transplants in Wales last year A new organ donation law could deter people in Wales from agreeing to donate, it has been claimed.

Proposals will soon be laid out for presumed consent, meaning people must opt out, or their organs may be used.

But opponents told Radio Wales' Eye on Wales it could undo good work in recent years to boost donation rates.

Renal consultant Peter Drew asked how people would react if organs are taken, not given, but supporters say it has worked in more than 20 other countries.

Presumed consent backers argue that it would increase the number of organs available for transplant, better reflect people's will to donate, and save NHS resources, on dialysis treatment for kidney patients, for example.

Under what is termed "soft" presumed consent, families would still be consulted prior to any donation.

At the end of June, there were 289 people on the "active" organ transplant list in Wales: in other words, they were ready to go into hospital for surgery, should an organ become available. Of these, 236 were waiting for kidneys.

Continue reading the main story

About 90% of people going down the high street here in Cardiff would say yes, organ donation, good thing. Only about 28% of people get around to opting in to do something about it”

End Quote Dai Lloyd Swansea GP and former AM One person dies every week awaiting a transplant in Wales.

Former AM Dai Lloyd, a Swansea GP, who first tried to introduce a presumed consent law, told the programme: "As opposed to the current system of opting in to register, opt out to say that you don't want to donate your organs.

"So it's the polar opposite of what happens at the moment.

"About 90% of people going down the high street here in Cardiff would say yes, organ donation, good thing.

"Only about 28% of people get around to opting in to do something about it… so at the present moment, we have a system of presumed objection, which also doesn't reflect what the public actually feels."

Organ donations from Wales rose by 66% over the past two years, and the nation is currently second to Spain for organ donation rates, at 27.7 per million people.

'Changed mind'

A total of 195 people received transplants in Wales last year.

Experts insist these improvements have followed the successful implementation of 14 recommendations from a UK-wide NHS organ donation taskforce.

The taskforce concluded against presumed consent in 2008 following an extensive inquiry, stating that "such a system has the potential to undermine the concept of donation as a gift, to erode trust in NHS professionals and the government, and impact negatively on organ donation numbers."

Continue reading the main story

There are sufficient concerns about how the matter will be handled, certainly in the press, and how the public will react to a change from organs that are given as a gift, rather than taken”

End Quote Dr Peter Drew Renal consultant Dr Drew, a renal consultant based in Wrexham, was a member of the NHS taskforce.

He told Eye on Wales that, having begun the process in support of presumed consent, he had changed his mind by the end of their inquiry.

"I wasn't the only person who came to the taskforce with a strong view of wanting presumed consent, and then had pause to rethink and just to think, is there any possibility it could backfire?

"I hope it won't, but there are sufficient concerns about how the matter will be handled, certainly in the press, and how the public will react to a change from organs that are given as a gift, rather than taken," he said.

"There has been a loss of trust in organisations of government, the health professions… and you cannot assume consent when consent has not been obtained.

"I think there is a possibility that that British bloody-mindedness might rear its head."

Health Minister Lesley Griffiths declined to be interviewed for Eye on Wales.

The Welsh Government said in a statement that it intends publishing a White Paper outlining a system of soft presumed consent in late October or early November; further consultation will follow, with a view to legislation being introduced in 2012.

Eye On Wales is on BBC Radio Wales on Sunday, 18 September at 13:00 BST

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Organ law 'may deter donations'

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18 September 2011 Last updated at 07:40 GMT A total of 195 people received transplants in Wales last year A new organ donation law could deter people in Wales from agreeing to donate, it has been claimed.

Proposals will soon be laid out for presumed consent, meaning people must opt out, or their organs may be used.

But opponents told Radio Wales' Eye on Wales it could undo good work in recent years to boost donation rates.

Renal consultant Peter Drew asked how people would react if organs are taken, not given, but supporters say it has worked in more than 20 other countries.

Presumed consent backers argue that it would increase the number of organs available for transplant, better reflect people's will to donate, and save NHS resources, on dialysis treatment for kidney patients, for example.

Under what is termed "soft" presumed consent, families would still be consulted prior to any donation.

At the end of June, there were 289 people on the "active" organ transplant list in Wales: in other words, they were ready to go into hospital for surgery, should an organ become available. Of these, 236 were waiting for kidneys.

Continue reading the main story

About 90% of people going down the high street here in Cardiff would say yes, organ donation, good thing. Only about 28% of people get around to opting in to do something about it”

End Quote Dai Lloyd Swansea GP and former AM One person dies every week awaiting a transplant in Wales.

Former AM Dai Lloyd, a Swansea GP, who first tried to introduce a presumed consent law, told the programme: "As opposed to the current system of opting in to register, opt out to say that you don't want to donate your organs.

"So it's the polar opposite of what happens at the moment.

"About 90% of people going down the high street here in Cardiff would say yes, organ donation, good thing.

"Only about 28% of people get around to opting in to do something about it… so at the present moment, we have a system of presumed objection, which also doesn't reflect what the public actually feels."

Organ donations from Wales rose by 66% over the past two years, and the nation is currently second to Spain for organ donation rates, at 27.7 per million people.

'Changed mind'

A total of 195 people received transplants in Wales last year.

Experts insist these improvements have followed the successful implementation of 14 recommendations from a UK-wide NHS organ donation taskforce.

The taskforce concluded against presumed consent in 2008 following an extensive inquiry, stating that "such a system has the potential to undermine the concept of donation as a gift, to erode trust in NHS professionals and the government, and impact negatively on organ donation numbers."

Continue reading the main story

There are sufficient concerns about how the matter will be handled, certainly in the press, and how the public will react to a change from organs that are given as a gift, rather than taken”

End Quote Dr Peter Drew Renal consultant Dr Drew, a renal consultant based in Wrexham, was a member of the NHS taskforce.

He told Eye on Wales that, having begun the process in support of presumed consent, he had changed his mind by the end of their inquiry.

"I wasn't the only person who came to the taskforce with a strong view of wanting presumed consent, and then had pause to rethink and just to think, is there any possibility it could backfire?

"I hope it won't, but there are sufficient concerns about how the matter will be handled, certainly in the press, and how the public will react to a change from organs that are given as a gift, rather than taken," he said.

"There has been a loss of trust in organisations of government, the health professions… and you cannot assume consent when consent has not been obtained.

"I think there is a possibility that that British bloody-mindedness might rear its head."

Health Minister Lesley Griffiths declined to be interviewed for Eye on Wales.

The Welsh Government said in a statement that it intends publishing a White Paper outlining a system of soft presumed consent in late October or early November; further consultation will follow, with a view to legislation being introduced in 2012.

Eye On Wales is on BBC Radio Wales on Sunday, 18 September at 13:00 BST

View the original article here

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