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We need ‘prompted’ choice systems for organ donation

By Mike Broad - 16th October 2011 10:53 am

The NHS should paying for the funerals of organ donors to help tackle the current shortage of organs, a report claims.

The Nuffield Council on Bioethics suggests that this would be an ethical way of encouraging more people to sign the Organ Donor Register. Under such a scheme, funeral expenses would be offered if someone who has signed the Organ Donor Register dies in circumstances where their organs can be donated to others.

The council’s report, Human bodies: donation for medicine and research, considers how far society should go in trying to encourage people to donate their bodily material, including organs, eggs, sperm, blood, tissue and whole bodies. It concludes that altruism should continue to be central to our approach to all types of donation as it underpins important community values, but this does not exclude the possibility of allowing some form of payment in some circumstances. The report therefore proposes an ‘intervention ladder’ to help policy makers consider the ethical acceptability of various ways of encouraging people to donate.

In the UK it is against the law to offer or accept payment to donate organs for the treatment of others. “We endorse this and agree that living donors, such as kidney, blood and bone marrow donors, should not receive payment other than direct and complete reimbursement of the costs brought about by their donation,” said Professor Dame Marilyn Strathern, who chaired the 18-month inquiry. “Rewarding living organ donors by paying more than this does not change the risks of donation, but there is a possibility that it might undermine the motive of helping others in need - we believe this motive should be preserved as far as possible.”

Spain and Belgium have ‘opt-out’ systems for deceased organ donation, where it is assumed that people consent to donation unless they objected to this before they died, or their family objects. A similar system may soon be introduced in Wales and, if it is, the Council recommends robust research into the effect it has. “There is uncertainty about whether or not an opt-out system would lead to more organs being donated. A clear evidence base should be established before changes are considered elsewhere in the UK,” said Keith Rigg, a transplant surgeon at Nottingham University Hospital and one of the authors of the report.

However, the council supports ‘mandated’ or ‘prompted’ choice systems, where people are required or urged to make a choice about organ donation during their lifetime - providing people have the opportunity to make any objections clear too. From August this year, people applying for a driving licence in England, Wales and Scotland have to indicate their wishes about organ donation when completing the DVLA application form online. However, they are not given an explicit option to say no. “We think it is very important for people’s wishes to be known in advance, but a compulsory choice system is only ethical if it includes an option to say ‘no, I don’t want my organs to be donated’,” said Professor Strathern.

In the UK, there are 8,000 people on the waiting list for an organ transplant and they will wait an average of three years for a suitable donor to become available. Three people die every day whilst waiting for an organ.

Strathern said: “Government initiatives to improve the health of the population are crucial to reducing the number of people in need of organs in the UK, but we must also take reasonable steps towards increasing the number of potential donors.

“The possibility of sparing relatives the financial burden of a funeral might encourage more people to register as donors.”

Currently, 18 million people - around 30% per cent of the UK population - are signed up to the Organ Donor Register.

She added: “Paying for the funerals of organ donors would be ethically justified - no harm can come to the donor, and it would be a form of recognition from society. We think a pilot scheme to test the public response to the idea is worth trying, alongside other schemes.”

The NHS is aiming to the number of people signed up to the Organ Donor Register to 25 million by 2013.

The report also considers the donation of eggs and sperm for use in fertility treatment and research. Shortages in supply of donor eggs and sperm have left many people who want treatment facing long waiting lists as fertility clinics struggle to meet demand.

“We would like to see the £250 cap on egg and sperm donor expenses removed to ensure that lost earnings are reimbursed in full. People who are willing to donate for other people’s treatment should not be left out of pocket,” said Strathern.

Furthermore, the report suggests that payment over and above expenses should be offered to those who are prepared to donate eggs for research, in return for the discomfort and inconvenience they experience. “Donating eggs for research purposes is different from donating to help someone else’s treatment. You’re not usually trying to help a particular individual - you are more a participant in a research exercise. A good comparison is that we already pay healthy volunteers to test medicines. We think it would be ethically justified to offer payment to women who are willing to give their time and undergo uncomfortable procedures in order to donate eggs for research,” said Strathern.

Increasing the potential number of donors is only one half of the story, says the council. Efficient procedures and sound organisational structures must be in place to make the maximum benefit of donated material.

The council recommends that the Department of Health should closely monitor the impact of any proposed changes to organ donation services, for example, and be prepared to act to protect systems that have been shown to work well.

“In light of proposed organisational changes to the NHS in England and pressure on health budgets, there is clearly a risk that improvements seen in recent years in the number of organs available to transplant might be lost,” she said.

The report also calls for a national or regional donor service to be set-up to improve co-ordination of egg and sperm donation for fertility treatment, along the lines of the current system for organ and blood donation.

NHS should pay for funerals of organ donors

By Mike Broad - 12th October 2011 5:03 pm

The NHS should paying for the funerals of organ donors to help tackle the current shortage of organs, a report claims.

The Nuffield Council on Bioethics - which produced the proposals - suggests that this would be an ethical way of encouraging more people to sign the Organ Donor Register. Under such a scheme, funeral expenses would be offered if someone who has signed the Organ Donor Register dies in circumstances where their organs can be donated to others.

Professor Dame Marilyn Strathern, who chaired the 18-month inquiry which led up to this report, said: “Government initiatives to improve the health of the population are crucial to reducing the number of people in need of organs in the UK, but we must also take reasonable steps towards increasing the number of potential donors.

“The possibility of sparing relatives the financial burden of a funeral might encourage more people to register as donors.”

Currently, 18 million people - around 30% per cent of the UK population - are signed up to the Organ Donor Register.

Professor Strathern said: “Paying for the funerals of organ donors would be ethically justified - no harm can come to the donor, and it would be a form of recognition from society. We think a pilot scheme to test the public response to the idea is worth trying, alongside other schemes.”

The NHS is aiming to the number of people signed up to the Organ Donor Register to 25 million by 2013.

Read the full report.

Tags: Organ donation
Posted in Hospital Dr News | 1 Comment »

Time for presumed consent on organ donation

By Mike Broad - 28th June 2011 2:42 pm

Doctors reaffirmed their support for the introduction of a system of presumed consent for organ donation at the BMA’s annual representatives meeting.

Under presumed consent, also known as an opt-out system, all people are assumed to be willing to donate their organs unless they have opted out. The BMA reaffirmed its support by defeating a motion which called for the reconsideration of its policy.

Those in favour believe it would help boost UK donation rates, which, despite recent improvements, still lag behind many other countries.

Over the last three years, the NHS has invested in specialist nurses and transplant co-ordinators to identify potential donors and allow for approaches to families when death becomes likely.

The BMA supports the introduction of a ‘soft’ system of presumed consent in which relatives’ views are also taken into account. Instead of being asked to consent to donation, they would be informed that their relative had not opted out of donation and unless they object - either because they are aware of an unregistered objection by the individual or because it would cause major distress to close relatives - the donation would proceed.

Donation would be the default position.

More than 3,700 donations took place last year - a 5% rise on the previous year - but there are still about 8,000 people on the waiting list.

Recent figures published by the Scottish government report that the number of Scots on the organ donor register is at an all time high, with 1.8million signed up to save a life. However, last year, there were only 67 organ donors in Scotland, while more than 600 people are still waiting for an organ.

Many more die before they even reach the waiting list.

Dr Sue Robertson, a renal physician and member of the BMA’s Scottish council, said: “Every year people die whilst waiting for a donor organ and evidence from other countries has shown that a system of presumed consent can address the shortage of donor organs and can save lives.

“It is important that an individual’s views on organ donation are taken into account following their death. Repeated surveys indicate that up to 90% of people are in favour of donating organs after their death, yet organ donation rates remain disappointingly low.

“Following the implementation of the recommendations of the organ donation taskforce in 2008, the NHS introduced a more robust system to support organ donation, but now is time for the government to take the next step. A system of presumed consent will create a system whereby the wishes of the individual can be taken into account and will increase the number of organs available for transplant.”

No part of the UK has introduced a system of presumed consent yet, although Wales has said it intends to.

Tags: Organ donation, Transplants
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‘Avoidable’ organ donation errors in 25 donors

BBC Health - 20th October 2010 10:27 am

An independent review finds avoidable errors led to the wrong organs being removed from 25 NHS donors in the UK.

Sir Gordon Duff, who led the review, says the blunder was due to faulty computer software used by UK Transplant to record donor wishes.

As many as 800,000 people on the UK donor register may have had their preferences about which organs they wished to donate recorded incorrectly.

He said new measures should avoid another error occurring.

But added in his report that the longer-term solution would be to enlist the help of experts to create a more secure, interactive system with better data verification and cross reference functions.

Independent review of donor errors announced

BBC Health - 11th April 2010 12:30 pm

There will be an independent review after the NHS transplant authority confirmed 21 cases in which the wrong organs may have been taken from donors.

Up to 800,000 people on the UK donor register may have had their preferences about which organs they wished to donate recorded incorrectly.

Health Secretary Andy Burnham said he regretted the error but it should not stop people from donating.

The BMA warned public confidence could be damaged.

NHS Blood and Transplant apologised and said only people in Scotland, England and Wales who had registered as donors using their driving licence application form were potentially affected.

While many of the 17m registered donors give consent for all their organs to be used for transplant after their death, some have withheld consent for certain organs - such as their eyes.

For the last 10 years however, the details of some donors’ preferences have been wrongly recorded because of a technical error.

Support altruistic kidney donation - I am

By Graham Potter - 7th October 2009 6:09 pm

In a recent blog, consultant spinal surgeon Paul Thorpe claimed that altruistic kidney donation is a bad idea. Well, I disagree and I’m going to do it.

We don’t “definitely” require the second kidney. We may require it in the future, but there is no “definite” about it. The Human Tissue Authority would not allow the donation if that were the case. Many people are born with only one kidney - mainly men I may add. Yet I doubt very much they all develop kidney disease in that remaining kidney.

Why is donating to a known person any different to donating to a stranger? Emotionally there is a tie with someone you know but I am sure at times there is also undue pressure for the relative to give up a kidney. They may have reservations but be unwilling to deny the person the chance of a better life.

Just because we don’t know the name of the recipient, and we have never met them, does it mean their life is worth less than someone we do know? Not in my book it doesn’t.

Also, I do not think that I should delay donating one of my own kidneys to a stranger just in case when I am 80-years-old a 50-year-old relative may want my kidney - which by then probably does not have much life left in it anyway!

By donating a kidney to a stranger, am I depriving a member of my family from a better life should they ever develop kidney problems that required a transplant?

No. They most definitely are against me hanging around ‘just in case’. In fact they are 110% behind me in wanting to donate to a stranger. There are plenty of other family members around who, should the need arise, can offer one of their kidneys to a relation.

Paul Thorpe seems to be under the impression that middle aged and older people are going to get kidney problems and their renal function will pack up.

I would like to see the medical evidence of this. I am sure the HTA would immediately suspend all live donors over the age of 50 years. Should my remaining kidney develop problems as I get older, then I am more than willing to go onto dialysis like thousands of people do now, especially as now home dialysis is available to all who want it.

I am in very good health. I live a healthy lifestyle there is no reason why my remaining kidney should pack up and require a transplant. But it is a risk that I and many others are willing to take.

Dr Paul Vandenbosch - an altruistic kidney donor - felt any risks involved were minimal. Having worked in the renal unit and treated many kidney patients over the years I tend to trust his knowledge and judgement on this subject, as I do the Renal Transplant Team that I am under.

The cost benefit of kidney transplantation compared to dialysis over a period of ten years (the median transplant survival time) is £241,000 or £24,100 per year for each year that the patient has a functioning transplanted kidney. In 2007-08, 2,282 people received a kidney transplant. These transplants are now saving the NHS £46.1m in dialysis costs each year for every year that the kidney functions.

I totally agree there should be a much more aggressive policy towards increasing the number of donors after death. An opt-out in my opinion gets the thumbs up. It would reduce the kidney transplant list down to zero.

Then, of course, there are the other organs that can be used for transplants as well. There would be no need perhaps for living donors at all. Monies saved through current live donors - altruistic or otherwise - can be put towards a really good long term campaign for organ donors.

As to whether we altruistic donors are brave or stupid, I would say we are neither. It is the recipient who is brave along with their family. Being under dialysis for years is no picnic. Some people have been on dialysis for 20 years or more with no hope of a transplant. Those are the brave people.

I am sure if more people knew what being on dialysis was like and how that and the strict diet and fluid intake imposed on them affects them, more people would want to help.

Am I stupid, as Paul Thorpe suggests? No not at all. This is often an adjective used by people who do not have all the facts and cannot begin to comprehend why some people would want to help others by taking a very small risk in donating an organ. We are also called stupid by people who wish they could donate but just don’t have the will to do so, and it makes them feel somewhat ‘inadequate’. It makes them better to think of us as stupid.

It is strange how some people are hailed great heroes because they climb freezing snow capped mountains, risking losing their nose and fingers and toes and even limbs to frostbite. They also risk death and some have died. But they knowingly take those risks - to what end? Who do they help by making such a heroic journey?

Surely, if taking a small risk to save someone’s life by donating an organ is stupid, then the great explorers who risk life and limb must be insane. No of course they are not, they are heroes. They are heroes because people can relate to them. They admire the courage and determination of the men and women who risk their lives to climb great heights. They understand and appreciate how hard it is to do this - the sheer guts and determination involved.

People risk their lives every day when they get into their cars to drive to work, or to the shops - yet it is a risk we are all prepared to take - for what? To make life easier for ourselves.

We are not called stupid for knowingly risking our lives every day in our vehicles. Yet people are killed, injured, left paralysed from motor accidents. The chances of getting hurt in an accident are far greater than any major problem resulting from donating a kidney.

Why is it so hard for people to accept that some people just want to help others and to them, the risk involved by giving up an organ is far less of a risk than every day life thrusts at them?

Tags: Organ donation, Transplants
Posted in Dr Blogs | 1 Comment »

For brave read stupid on altruistic kidney donation

By Mr Paul Thorpe - 26th June 2009 11:53 am

We have two kidneys for a reason - if one packs up, we can live on the other. So what would bring you to getting rid of one of your giblets when you still definitely require it?

It is, of course, incredibly sad when someone experiences the hellish existence of life with a failing vital organ. I can fully understand that if a blood relative or lifelong partner is likely to die while on a transplant list, then one would consider a live donation.

However, am I alone in not sharing the same journalistic enthusiasm championing the rise in altruistic donation this week?

Dewy eyed reporters were in raptures over the ‘brave’ people who willingly gave up their kidneys for general use on the transplant list. In medicine, the term ‘brave’ is often a polite way of saying ‘stupid’ or ‘reckless’, and this lot fall firmly into the same category.

Has anyone spotted the flaw of middle aged people giving up a kidney with 20 years plus expected of the singleton? What happens when their own renal function starts to pack up? Won’t they just be contributing to the problem they are trying to solve, having to go out and find their own altruistic donor?

The claims that ‘live’ organs are rejected less than post mortem ones may be true, but surely the point here is that we need a more open and aggressive policy towards increasing the number of donors - like the Iberian countries, where not only are you more likely to be placed in a persistent vegetative state by another road user, but there is also an ‘opt out’ rather than ‘opt in’ organ donation/harvest policy.

Needless to say, they have fewer people on the waiting list.

Call me selfish, but I want to keep my filtering tanks the way they are, and only my family need apply for any consideration - the rest of you - hands off my kidneys!

Tags: Organ donation
Posted in Paul Thorpe | 4 Comments »