Wales will become first UK nation to introduce 'opt out' policy for organ donation

Under the Bill, people over the age of 18 who have been a resident in Wales for more than 12 months will have to put in place a clear indication of their wish not to donate their organs for them to be excluded from donation after death, otherwise their consent will be deemed to have been given.

By Julia McWatt, Wales Online, Jul 3, 2013
Wales will become the first nation in the UK to introduce a policy of presumed consent for organ donation after AMs voted in favor of historic legislation to bring in changes to the system.

The Human Transplantation (Wales) Bill was approved by the National Assembly, with 43 AMs in favor and eight against, following a lengthy and passionate debate on controversial changes to move to an “opt out” system.

Under the Bill, people over the age of 18 who have been a resident in Wales for more than 12 months will have to put in place a clear indication of their wish not to donate their organs for them to be excluded from donation after death, otherwise their consent will be deemed to have been given.

Last night campaigners celebrated the decision after years of lobbying for the change and said the measure would help to save lives. Currently 226 people in Wales are on the transplant waiting list and three people a month die while waiting for an organ.

The British Medical Association’s Welsh Secretary, Dr Richard Lewis, said: “I believe that this is the most important piece of legislation created in Wales since the laws of Hywel Dda.

“A few years ago, Wales was ready to lead the UK on banning smoking in public places, but we didn't have the necessary legal powers. 

“This time we are delighted that our National Assembly has shown the rest of the UK the way forward and fully support its implementation. We congratulate AMs for their enlightenment. Patients across the country will now benefit directly or indirectly benefit from this Bill.  

“BMA Cymru Wales and other organisations have been campaigning tirelessly for many years to persuade politicians in Cardiff Bay that this is the right decision and address concerns about how it works. This is the culmination of years of hard work.

“We must all now work hard to ensure that the system works and that everybody understands it.”

Roy J Thomas, chief executive of Kidney Wales Foundation, said: “Deemed consent has a positive and sizeable effect on organ donation rates. Wales has been at the forefront of organ donation with development of the Organ Donor Register in the 1980s to having the DVLA communicate on the issue when sending out driving licenses.

“This law is further progress and evidence shows it will increase donation rates. The new deemed consent system in Wales needs to be given stewardship and trusted to the medical profession.

“In opting for this law Assembly Members are opting for life.”

The “opt out” system, which the Welsh Government believes will result in a 25% increase in the number of available organs in Wales, will come into place in 2015.

Following the vote, the Bill will go to Royal Assent and £4m will be spent communicating the changes to the public.

The Bill is the biggest – and one of the most controversial – pieces of legislation to be made since devolution with faith groups opposing the idea of presumed consent.

People can continue to opt in, opt out or choose not to act and have their consent deemed.

‘Novel’ forms of transplant, such as face and limb transplants, will always require express consent, and people can also opt out of donating certain organs, as is the current process.

One of the legislation’s fiercest critics, the Archbishop of Wales Dr Barry Morgan, has previously said he believes it undermines the idea of organ donation being a ‘gift’.

Prior to the debate a joint statement by faith groups had urged AMs to vote in favour of amendments to give further power to family members.

Health Minister Mark Drakeford had made previous amendments to give the family  a “clear right of objection” if they could prove they were aware of the wishes of the deceased.

But during the debate, Shadow Health Minister Darren Millar, who voted against the Bill, echoed calls by faith groups for the legislation to give families the option to decide, rather than convey whether they knew the wishes of deceased.

He said: “I am very supportive of organ donation. The importance of the gift of organ donation cannot be underestimated and should be promoted. For the loved ones of someone who had died, donation can make a positive contribution to the grieving process.

“I’m opposed in principle to a system where organ transplantation becomes a passive act, and consent for it is presumed, or as the Bill puts it deemed, by the state. We need to ensure and inspire public confidence in whatever system we have.

“Family members should have the right to object from their own views.”

However, Prof Drakeford rejected the calls and said a “good deal of mischief” had been made over the role of the family. He said accepting Mr Millar’s proposals, the Bill would “not be what we want it to be.”

He said the Bill was a “historic day” for Wales and showed that Wales was a “progressive nation”.

“This is a Bill that offers hope and hope to people who have no other. People whose very lives depend on transplantation,” he said.

Organ donation: What the new law means

Speaking after the vote, he said: “I am proud that Wales will be the first nation in the UK to take this step. As a society, we have shown we are prepared to take action  to increase organ donation and to provide hope to those people waiting every week for a transplant.

“Family refusal is a major factor that affects the numbers of organ donations and the main reason for refusal is lack of knowledge of their loved one’s wishes.

“The family of the potential donor has a major role to play in organ donation. The aim of the Bill has always been to respect the wishes of the deceased, however, relatives or friends of long standing may object to consent being deemed based on what they know about the views of the deceased.

“The new law will work by clarifying people’s wishes around the issue of organ donation and, in turn, increase the rate of consent to donation.

“Today is a landmark day for Wales, and I expect the rest of the UK to be watching with great interest when the legislation is implemented in 2015.”

Mr Millar said: “This has been a landmark day for Wales and – while I hope this achieves the increase in organ donation we all want to see – there is still much work to do.

“The coming months and years must now be spent intensively educating families and communities the length and breadth of Wales.

“This is a significant change from the previous system that remains controversial – and no stone must be left unturned in getting the message across.

“Welsh Conservative amendments focusing on children and the vulnerable, nominated representatives, capacity in critical care, and the rights of the family were all extremely important.

“I remain concerned that not all of our concerns were properly addressed in the legislation and look to the guidance on transplantation to address these issues. We look forward to scrutinising the implementation in due course.”

Leader of the Welsh Liberal Democrats Kirsty Williams supported the Bill and said it was vital that people discussed their position on organ donation with their family.

She said: “The fact is that lives will be saved if this Bill is passed.  Significantly, it will also ensure that the issue is given more prominence and that people across Wales will be talking about organ donation.  Three people die every month waiting for a transplant.  That is three too many.

“We have been told that this legislation will not be enough to increase donor rates, therefore the publicity campaign is important so we carry on urging others to have these conversations.

“Talking about these things does not come easily. It almost seems the very suggestion might in some way make it more likely to happen to you or one of your loved ones, but those discussions must happen. It’s only by having those discussions and having this publicity about what donation can do that will drive up donation rates.”

Plaid Cymru’s health spokeswoman, Elin Jones, said:“The Bill is an important piece of legislation which is sure to save lives in Wales.

“However the Welsh Government must not be complacent on this issue. These changes to the law need to be supported with a concerted effort to raise awareness of this matter organ donation, to ensure that the people of Wales are aware of the impact of the choices they make on this matter.”

Members of the medical profession said they would do all they can to help make the Bill a success for Wales.

Professor John Saunders, chair of the ethics committee of the Royal College of Physicians (RCP), said: “The RCP welcomes effective moves to increase organ donation.

“My colleagues and I will do all we can to help make sure it is a success. This will mean changes to the way we think about organ donation and the way we organise our transplantation services.

“Wales is leading the way with this Bill, and we will be seen as the test case for other countries. If this Bill is to make a real difference to people’s lives, we must do all we can do to ensure that we measure the benefits properly.”

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

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Presumed consent for organ donation in Wales soon

Presumed consent could be introduced in Wales - a move that opponents say could cause extra stress for bereaved families.

By Rhlannon Mills, Sky News Reporter

Video: Wales Set For Organ Donor Opt-Out

Enlarge

Wales is expected to become the first part of the UK to bring in an 
opt-out scheme for organ donation.

The Welsh Assembly will hold the final vote on
the Human Transplantation (Wales) Bill later,
which if enacted would bring in a system of "presumed consent"
for organ donation.

Under the proposals, people in Wales will have to clearly indicate that
they do not wish to give their organs when they die in order
to be excluded from the donor register.

Kidney Wales Foundation (KWF) has campaigned for the proposed
change in the law for the last five years and believes that
donor organ availability could be boosted by up to 35%
if it goes through and many more lives could be saved.

"The UK is one of the lowest donor rate countries in Europe," said
Roy Thomas, KWF chief executive.

"The new Bill is new progressive law. We are proud to have led
the debate in favour of this law.

"When introduced in Belgium only 2% opted out, currently only
around a third of the Welsh population is on the organ donor 
register and this is around the same for the UK as a whole."

Those against the proposals claim it will cause extra distress for
bereaved families and could put medical staff in a difficult position.

The UK currently has one of the lowest donor rates in Europe

Laura Raffour's four-year-old daughter Ava was born with a life-threatening liver condition and underwent heart surgery and two liver transplants before her first birthday. In total she has undergone over 60 operations.

Ms Raffour, who is now on the organ donor register, said:
"Ava has been given a second chance at life and I want other people, 
young and old, to also have a better quality of life.

"For us, organ donation comes down to the premise that if you're
willing to take, you should be willing to give. Simple as."

In 2004, Gaynor Taylor from Barry, South Wales, lost her 23-year-old
champion skater son Richard in a freak accident.

They had never talked about being an organ donor but Ms Taylor
eventually agree to donation.

She only later found out that Richard put his name on the
NHS Organ Donor Register without telling anybody.

"While we were in favour of organ donation, knowing his wishes made
the whole process a lot easier to accept and meant we had done the
right thing by him," she said.

"Making a decision on whether to allow donation is a very difficult
decision at the most traumatic time.

"Six people's lives were saved as a result of donating Richard's organs and the recipient of Richard’s heart went on to win gold at the Transplant Games
which is an incredible story and proves something positive can sometimes
come from tragedy."

If the legislation is passed, a two-year public information campaign will
follow in Wales to ensure members of the public are fully informed on
what the changes will mean and how to make their wishes known
through a single organ and tissue donation register.

Yet a group of faith leaders and senior health professionals in Wales
have issued a joint statement calling for a soft opt-out option,
which would take into consideration the views of bereaved families.

The signatories, who include the Archbishop of Wales, Dr Barry Morgan,
and the Catholic Archbishop of Cardiff, George Stack, said:
"The law must be amended in this way if it is not to be inhuman, 
unfeeling before the suffering of relatives, and a danger to the 
public trust and support which are necessary for the practice 
of organ donation to flourish.

"Without this there is a real danger that the law could backfire."

One person dies every week in Wales waiting for an organ transplant.
The figure for the UK as a whole is three people a day.

“You Have the Power to Donate Life – Sign-up today! Tell Your Loved Ones of Your Decision”

Donor Registration Links 

Presumed consent discussion continues in Canada

By Laura Eggertson,Canadian Medical Association Journal

Testing presumed consent for organ donation in a province or region where residents support the notion could help resolve the debate over whether a national "opt-out" system would improve Canada's chronic organ shortage, an expert says.

"From a national point of view, because consent to organ and tissue donation laws are provincially based, we would welcome having a province take a lead on this to demonstrate whether it is effective," says Dr. Sam Shemie, medical director for organs and tissues donation at Canadian Blood Services (CBS) and a pediatric intensive care physician in the Division of Pediatric Critical Care at Montreal Children's Hospital in Quebec. "If Atlantic Canada decides to pursue this, good on them. It would be an example for the rest of us."

A recent survey indicated that a majority of people in Nova Scotia, New Brunswick and Newfoundland and Labrador would support an "opt-out" approach to organ donation. Such programs presuppose the presumed consent of residents to be organ donors unless they take proactive steps to indicate their objections.

Currently, the converse is true. Canadians can "opt in" to donate after they die by either signing the form on their driver's license, or through the explicit consent of surviving family. Traditionally, even if a person has signed a donor card, the final decision has typically been left to families, although consideration is being given to adopting the concept of "first person consent," i.e., automatically harvesting organs when a donor card has been signed (www.cmaj.ca/lookup/doi/10.1503/cmaj.061256). As part of its recent plan to create an "integrated inter-provincial organ donation and transplantation system," CBS proposes to craft strategies that would substantially increase organ donation rate (www.cmaj.ca/lookup/doi/10.1503/cmaj.109-4239).

Although it's long been held that Canadians find an "opt-out" approach somewhat anathema, a Corporate Research Associates Sept. 12 survey of 1200 adults in Atlantic Canada suggests that opinion on the issue is shifting. Some 60% of Nova Scotians support the proposition of presumed consent, as do 56% of people in Newfoundland and Labrador, and 55% of people in New Brunswick (The survey's accuracy was reported at ± 4.9 percentage points, 95 times out of 100).

Although Prince Edward Island residents were not surveyed, the province indicated the findings are cause for a discussion on presumed consent.

PEI, as well as the other Atlantic provinces, "is in the preliminary stages of looking at that," says Dr. Richard Wedge, executive director of medical affairs for Health PEI. "We haven't got any concrete plans at this point to do anything like this. … The people who work on different policies within organ donation and transplantation programs have been discussing this, along with an inter-provincial initiative that's under way to try to improve organ donation in Canada."

CBS and the various provincial agencies responsible for organ donation and transplantation have been discussing approaches to improving organ donation rates in Canada for 20 years, says Shemie. Over the past five years, national public opinion surveys have been evenly split between those who support and oppose presumed consent, he says, adding that if popular opinion is shifting in favour of such a program in a particular region, then it's appropriate for that province to discuss that option.

As part of its new national strategic plan, CBS will advocate for more investment in front-line donation and transplant services, improved training and support for hospital personnel in all departments, and better education for the Canadian public, before considering a controversial approach such as presumed consent, Shemie says. "The conclusion certainly from a national perspective is — not now. Maybe later, but not now. But we would welcome provinces taking the lead. This is the way innovation in health care and health policy occurs. One place tries it and it demonstrates to the rest of the country how controversial it is, what the problems with it are, and what the successes are."

Reaction to presumed consent in Ontario was mixed in the findings of a 2007 survey, says Ronnie Gavsie, president and chief executive officer of the Trillium Gift of Life Network. "It is clear people feel organ donation is a gift — a step that is positive and taken proactively, rather than it being a reactive assumption that someone would be a donor."

Ontario is not prepared to become the province that steps out to test the presumed consent waters, because most residents believe people should register their consent to be donors at beadonor.ca and have the discussion with their families, Gavsie adds.

Countries that have presumed consent policies in place, such as Spain, have "told us categorically that they do not believe their donation rates are a reflection of presumed consent," she says. Gavsie also notes that presumed consent did not increase donation rates in Singapore and that even when such approaches are in place, family consent is typically required and people often deny permission because they do not believe their loved one made an informed decision.

"So there's simply no evidence that we have, even when we look internationally, that presumed consent is the silver bullet," Gavsie says.

According to CBS, Canada's donation rate in 2010 was 13.9 deceased organ donations per million population, a rate which lagged well behind that of the United Kingdom (15.5), the United States (26.1) and Spain (32.1). There were 2153 organ transplants in Canada in 2010, including 1234 kidneys, 443 livers, 167 hearts and 178 lungs, according to the Canadian Organ Replacement Register. There were 4529 Canadians on the waiting lists, 511 people who withdrew their names from a waiting list and 247 people who died while on a list.

Although the United Kingdom recently rejected the presumed consent model as a way of increasing organ donation rates in England, Wales is looking at the option "very seriously," says Shemie.

Presumed consent organ donation to be Welsh law by 2015

BBC news
The Welsh government says it plans to have a new law in place for presumed consent of organ donation by 2015.

The legislation would require people to opt out of donating their organs when they die, rather than opting in by signing the donor register.

A White Paper setting out a timetable is set to be published this week.

Opponents say they do not believe it will work and it will hit trust in the system but supporters claim it will save more lives.

The Welsh government has told the BBC Wales Politics Show that it is planning a system of "soft" presumed consent where family members would still be consulted after a person's death.

A spokesperson said: "We believe we should be progressive on this issue and follow the example of those countries with excellent records on organ donation, where an opt-out system is a key element.

"Introducing a soft opt-out system will mean people are more likely to make decisions about donation during their lifetime and to have discussed their wishes with their family."

It is thought that ministers will publish a White Paper later this week which will set out the legislative timetable.

Currently people have to opt to join the NHS organ donor register if they want to donate their organs and tissues after death.

Glyn Davies, Conservative MP for Montgomeryshire, said he would be seeking time in Westminster to debate the issue.

Losing people

"I want to spend half an hour explaining in a considered way why this won't work," he said.

"It does not deliver but a fraction more organs.

"One of the real problems I've got with presumed consent is that it undermines trust.

"I don't mind moving towards a presumptive attitude because almost everybody is in favour of organ donation so it's reasonable to have a presumptive attitude.

"But if there's presumed consent, then there's a suspicion and I think that does affect trust."

But Roy Thomas, chairman of the Kidney Wales Foundation, claims it will increase the number of organs available for donation by up to 30 percent.

"[It] will solve a lot of issues for people who are waiting for a transplant," he added.

"We are losing one person each week here in Wales and that's a huge amount of people who are dying and we need to give them hope.

"I believe the Welsh government has got this absolutely right and are progressive. Indeed I think the rest of the UK will follow."

“You Have the Power to Donate Life – to become an organ and tissue donor Sign-up today!
Tell Your Loved Ones of Your Decision”

Australia, register at Australian Organ Donor Register

New Zealand, register at Organ Donation New Zealand

Canada - Ontario beadonor.ca
other Canadian provinces

South Africa, http://www.odf.org.za/

United States, organdonor.gov

United Kingdom, register at NHS Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Organ Donation: Make the Tragedy of Death Less Wasteful

By Dominic Stevenson huffingtonpost.co.uk

The average waiting time for the donation of a heart is 93 days for a child and 184 days for an adult and for a kidney, it is 277 and 1110 days respectively. Imagine what you could do with three years of good health and not spending hours of your day hooked up to a dialysis machine. Imagine how much agony families would be spared by not having to wait three months to see if their child can have a heart transplant.

Countries such as Austria, Belgium and Spain have opt-out system of donation and despite regional variations, tend to have higher levels of donation than in the UK. There are currently over 15 million people on the organ donor register in the UK but this does not always equate to all of those on the register donating their organs. Family members still have the right to veto organ donation in the UK after a patient has passed away.

Sally Johnson, director for organ donation and transplantation at NHS Blood and Transplant, said: "We all know how frustrating it is to wait for something we want - be it a bus, exam results or a delivery at home - but our lives don't depend on it. Imagine how it feels to be one of those waiting on average three years for a life saving organ transplant."2

The Welsh Assembly has set out their legislative priorities and one of those is establish an opt-out system of organ donation. They want to use the same 'soft approach' to organ donation as they use in Spain and this means that Welsh residents are presumed donors unless their families object. I suspect that if this legislation is passed, the results will be watched carefully by the government to see whether it will be implemented across the UK.

Recently Alice Pyne hit the headlines after publishing her bucket list online. One of the items on her bucket list was to get more people to sign up to the Anthony Nolan bone marrow register. As a result of the international attention her story got, they received 2134 applicants to join the register in two days. This was an equivalent to a month's worth of applicants. It is incredibly sad that Alice is now too ill to receive a donor but her efforts now will save lives for years to come.

When I am gone, I will be gone and however upsetting that may be for my loved ones, I would hope that they would find comfort in knowing that parts of me had gone towards saving or improving a life. I would also allow for the organs of a loved one to be taken for donation if they had not previously specified a preference.

Through my work, I have seen organs being stored following extraction from a donor and I have seen the same ones transplanted into a patient. The first time I saw this, it was a very special experience as I knew that a life had been changed for the better. It seemed to make the tragedy of death less wasteful. We will all be buried or cremated, so why not help someone have a chance at an improved life whilst our organs are still suitable for that purpose?

You can sign up for the organ donor register by visiting http://www.organdonation.nhs.uk

If you do sign up, talk to your family about it and explain why you have done it. I signed up for the first time following an appeal by somebody that I studied with at university. She needed bone marrow but sadly a matching donor wasn't found in time.

The tragedy you may feel at the death of a love one is not the best legacy, giving someone a second chance at life can be.

Follow Dominic Stevenson on Twitter: www.twitter.com/dom_stevenson

“You Have the Power to Donate Life – Sign-up today!
Tell Your Loved Ones of Your Decision”

Canada Ontario,
Canada - British Columbia, other Canadian provinces

United States, organdonor.gov (Select your state - top right)

United Kingdom, register at NHS Organ Donor Register

Australia, register at Australian Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Presumed consent system debated in UK

Would you opt out of organ donation?

Delegates to the British Medical Association's annual conference will debate a system of presumed consent for organ donation.

But would you opt out of donating your organs?

The opt-out or presumed consent system of organ donation has been considered by many countries as a way to deal with the acute shortage of donor organs for transplantation. The Guardian Newspaper has run a feature on this and for an excellent discussion of what the public thinks about this go to the readers' feedback section.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario at beadonor.ca
For other Canadian provinces click here

United States, organdonor.gov (Select your state - top right)

United Kingdom, register at NHS Organ Donor Register

Australia, register at Australian Organ Donor Register

Your generosity can save or enhance the lives of up to fifty people with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Shortage of Transplant Organs Spurs Proposals But No Solution

By Jenifer Goodwin (HealthDay News) -- Organ transplants save thousands of lives every year, but many more people languish on waiting lists because of a serious shortage of organs. While proposals to increase the supply have gained some followers, opinions differ on whether they will work -- or even if they should be tried at all.

"The bottom line is the organ shortage keeps getting bigger," said David Undis, executive director of a Nashville, Tenn., group that would give priority to people who have signed up as donors themselves. His solution is one of several garnering attention.

In New York, a state legislator introduced a bill in April that would assume all state residents were organ donors unless they specifically opted out. Called "presumed consent," the law would be a first for the United States, although similar policies exist in many European countries.

A similar bill introduced in Delaware in 2008 died in committee, said Arthur Caplan, a professor of bioethics at University of Pennsylvania School of Medicine in Philadelphia.

In California, a state legislator has introduced a bill that would set up a registry of people willing to be living donors of kidneys. In many cases, living donors give a kidney to a family member or loved one. But sometimes, the loved one isn't a good match. A living donor registry would help with paired exchanges, in which a living donor could swap with a stranger in return for that person's loved one offering a kidney to theirs.

The registry is being championed by Apple co-founder Steve Jobs, the recipient of a donated liver, and is supported by Gov. Arnold Schwarzenegger.

While their approaches differ, on one point everyone agrees: There aren't enough organs to meet the need. In the United States, about 100,000 adults and children are waiting for organ transplants, and 18 people die each day while waiting, according to Donate Life America.

LifeSharers -- the group Undis founded -- has run an organ donor registry since 2002 in which members agree to give first preference for their organs to others who have signed up with the registry to be organ donors themselves.

As Undis puts it, "99.9 percent of us would accept a transplant if we needed one to live, but only half of us are signed up to give."

Giving donors priority is a win-win situation, he believes. "If you give them first to registered organ donors, more people will register, and fewer people will die waiting for transplants," he said.

Currently, 13,800 have signed up for LifeSharers. No organ transplants have come of it yet, Unis said.

Under the current system, U.S. residents must "opt in" to be donors. A common way of doing so is on a driver's license application or by an organ donor designation, such as a sticker, on the driver's license.

When it comes to determining who gets available organs, the United Network for Organ Sharing (UNOS) in Richmond, Va., maintains a list of patients waiting for donated organs and oversees organ matching and placement.

While specifics vary depending on the organ, the patient's medical condition, how closely blood, tissue and the donor's size match the donor, time on the waiting list and proximity to the donor are considered, according to Donate Life America.

UNOS, which manages the nation's Organ Procurement and Transplantation Network, established by Congress in 1984, takes issue with the LifeSharers' philosophy.

Its approach would "essentially punish transplant candidates who haven't made a particular personal decision," said Mandy Ames, a UNOS spokeswoman. "And while we value that particular decision, we believe the transplant system should neither reward nor punish people for their personal decisions or beliefs," she said.

Caplan said he considers the LifeSharers' concept impractical. With only about one in 1,000 deaths leading to a viable organ for transplant, millions would need to sign up to have enough organs to offer those who pledge to donate.

"I favored presumed consent approach," Caplan said. "The majority of people say they want to donate. They are not looking for priority or money. They do want to do it for altruistic reasons. Under the current system, we're not able to capture all of that altruism."

A recent report in the BMJ said nearly 300 additional organ transplants could be carried out a year if Britain adopted an "opt out" policy like the one proposed in New York.

“You Have the Power to Save Lives – Register to be an organ and tissue donor & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants (see allotransplantation). One tissue donor can help 75 to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ or tissue transplant. Organs can save lives, corneas renew vision, and tissue may help to restore someone's ability to walk, run or move freely without pain. Life Begins with You

Are lung transplants the way forward?

Respiratory nurse and Nursing Times blogger Janelle Yorke on donor transplantation.

Having been a nurse consultant for heart and lung transplantation I follow the UK’s organ donation and transplant agenda with great interest. Lung transplantation in particular has come through a testing beginning and now offers a viable option for people with lung disease. The major obstacle is the lack of donor organs. Transplant teams have responded to this challenge and increased the donor pool by accepting ‘marginal’ donors (i.e. older donors and people with a history of smoking). To some this may seem ironic; transplanting the lungs of a smoker into someone who may have a smoking related disease. But COPD is only one of many reasons why someone may require new lungs.

International statistics put double lung transplant survival rates at 53% at 5 years and 33% at 10 years. The center at Newcastle has a 10 year survival of nearly 50%. Some may question whether or not this should be deemed a great success or even value for money. Transplant techniques and post transplant care is continuing to evolve and improve. No doubt survival rates will continue to improve as time passes. But let’s not forget that there are individuals, real people with hope behind these statistics. A 50% chance of living for another 10 years if you are in your 20’s, or even 60’s is probably a gamble most of us would opt for. The other option is certain death.

What many people don’t realize is that you, or someone you know, are more likely to need an organ transplant than become an organ donor themselves. This raises the question as to why more people do not join the organ donor registry. Perhaps a lack of knowledge and understanding plays a major role. There is also the myth that if you sign-up to be an organ donor perhaps not everything will be done to save your life. This is simply not true.

The government’s Organ Donation Taskforce has recently introduced a number of measures to try to increase the number of people signed-up on the donor registry. Many members of parliament and donor and transplant agencies would like to introduce an opt-out scheme, similar to that in Spain. Under this type of scheme, people would have to object specifically if they did not want their organs to be available for transplant after they died. The RCN has recently opted to not support an ‘opt-out’ policy on organ donation. A recent article in the Nursing Times states that this decision was made following consultation with its members. Unfortunately, the number of nurses who responded was very low and hardly representative – about 150 nurses either individually or through joint responses. Of these, 43% were in favour of ‘presumed consent’ (i.e. opt-out scheme) and 57% wanted the RCN to support the current opt-in policy.

A fair comment was made by Maura Buchanan (RCN president) that evidence from Spain showed that the role played by transplant coordinators was the key factor to improving the number of donors. However, donor coordinators need to be given the opportunity to approach families in the first place and to seek consent. This does not always happen.

I am not suggesting that the UK should definitely move to an opt-out scheme. What I am suggesting is that the RCN have been too hasty in changing from ‘no official position’ to an official stance of not supporting an opt-out scheme.

Perhaps a position of neutrality, as recently placed on the issue of assisted suicide, would have been a more appropriate option at this stage. At least ‘neutrality’ would be more amenable to open debate and afford the position that more research and information is needed before an official position can be made. What needs to be added to the debate is the importance of individuals talking to their family about what they would want in the event that they should be in the position to be an organ donor.

The positive step in all of this is making the personal decision about whether or not you would like to be a donor and letting people know, including registering that decision with whatever scheme is in place. This alleviates the burden from loved ones from having to make such a decision at an extremely stressful time.

As a society we are generally not willing to talk about death, especially our own. The recent media and public interest in the assisted suicide debate seems to be changing this. People are starting to talk about death; it is after all the final result for us all. How we weigh up the needs and hopes of thousands of patients waiting for an organ transplant against the pros and cons of an opt-in or opt-out scheme is still a very debatable subject.

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ transplant.

Organ donation without consent

Here is more food for thought on the controversy over the concept of 'Presumed Consent" or an "Opt-out system" of organ donation. Readers can make their own minds up about the issue and we thank Pundit and Pundette for this post on their excellent blog.

Friday, September 4, 2009
Pundit & Pundette
"I’ve written before about attempts by institutions to change cultural norms by creating default options which “nudge” the masses in the direction desired by the elites. I called it “horribly insidious: a subtle extension of the nanny state where numerous decisions are pre-made and pre-packaged for us, and the exact opposite of what it once meant to be an American: independent-minded and self-determining.”

This proposal concerning our organs, made by Obama’s “regulation czar” in his 2008 book, is an outrage, amounting to organ donation without consent:

Cass Sunstein, President Barack Obama’s nominee to head the Office of Information and Regulatory Affairs (OIRA), has advocated a policy under which the government would “presume” someone has consented to having his or her organs removed for transplantation into someone else when they die unless that person has explicitly indicated that his or her organs should not be taken.

Under such a policy, hospitals would harvest organs from people who never gave permission for this to be done.

Outlined in the 2008 book “Nudge: Improving Decisions About Health, Wealth, and Happiness,” Sunstein and co-author Richard H. Thaler argued that the main reason that more people do not donate their organs is because they are required to choose donation.

Sunstein and Thaler pointed out that doctors often must ask the deceased’s family members whether or not their dead relative would have wanted to donate his organs. These family members usually err on the side of caution and refuse to donate their loved one’s organs.

“The major obstacle to increasing [organ] donations is the need to get the consent of surviving family members,” said Sunstein and Thaler.

Read on. This idea is a real horror. It has nothing whatever to do with the merits of organ transplants or a person’s beliefs regarding this personal issue. It’s about one group making the decision for others.

Sunstein elaborates on the concept of “nudging”:

“We think that it’s time for institutions, including government, to become much more user-friendly by enlisting the science of choice to make life easier for people and by gently nudging them in directions that will make their lives better,” they wrote.

“…The human brain is amazing, but it evolved for specific purposes, such as avoiding predators and finding food,” said Thaler and Sunstein. “Those purposes do not include choosing good credit card plans, reducing harmful pollution, avoiding fatty foods, and planning for a decade or so from now. Fortunately, a few nudges can help a lot.

Very progressive I’m sure. But what gives one entity — especially the government — the right to nudge an individual, through default options built into regulations and laws, toward a particular course of action? Who are they to make a judgment on our credit cards, our snacks, or our kidneys? The whole “nudge” concept presupposes that one group knows what’s best for the rest of us. It’s elitist to the core.”

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ transplant.

'30 die' in organ transplant wait

The idea of an 'opt-out' or 'presumed consent' system of organ donation in the UK is still being debated and according to this article the British Medical Association is advocating the adoption of a "soft" system of presumed consent.

The British Medical Association (BMA) is calling for urgent action after it estimated 30 people died waiting for organ transplants in Wales in a year.

From BBC News

It said it believed the assembly government should introduce a "soft" system of presumed consent.

An assembly health committee last year said ministers should not seek powers to bring in such a system, where people would have to opt out of being donors.

Health Minister Edwina Hart is now considering responses to consultation.

BMA Cymru Wales submitted a response to the consultation, saying the current organ donation process needed to be overhauled "sooner rather than later, before more lives are lost".

It estimated that 30 people died while still on the organ donation register in the past year in Wales - with 150 people dying in the last five years.

Dr Richard Lewis, Welsh Secretary of the BMA, said a system of presumed consent would produce a far higher potential donor rate than at present.

"The main difficulty with the current system is that where, as in the majority of cases, relatives do not know what their loved ones wishes are, they frequently, and understandably, opt for the default position, which is not to donate," he said.

"This would be addressed by the introduction of an opt-out system where the default position would change in favour of donation.

"We recognise this is a subject many people hold strong views about and as such, those who do not want to donate their organs will sign up to opt out."

He urged the assembly government to take action and apply for the legislation needed to bring in a new system.

"The time really has come, before more people die waiting in vain, the Welsh Assembly Government needs to stop procrastinating and seek an LCO (Legislative Competence Order) from Westminster to bring in a soft system of presumed consent," he added.

'Public debate'

However, the British Organ Donor Society is against the opt-out system, saying they think education is the key.

Chairman Ray Pearson, whose daughter donated organs to seven people after she died in a road traffic accident, said: "The answer to the problem is education. The best form of education is is the education of children. The children then will educate the parents."

Joyce Robins, co-director of the patients' group, Patient Concern, said: "The BMA is using its considerable influence to mould public opinion on the basis of misinformation and distorted facts about the supply of organs".

She added: "They make sweeping statements about presumed consent producing a far higher number of organs".

In September 2008, the health minister rejected the assembly health committee's recommendation that ministers should not seek powers to bring in presumed consent.

She then ordered a series of debates to gather public opinion on possible changes to organ donations in Wales.

A spokesman for the assembly government said officials were now considering the results of the consultation.

"We have held a public debate on the possibility of changing legislation and have consulted on options to increase organ donation," he said.

"Officials are now considering the responses to the consultation and will be advising Mrs Hart on options available to the assembly government."

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ transplant.

How Viable is Presumed Consent in Organ Donation?

There are very few countries in the world that follow the presumed consent policy with regard to organ donation, and almost all of them are in Europe including Denmark, Sweden, Austria, France, Italy, Finland, Norway and Belgium. This, in simple terms, means that the organs of people who die are automatically allowed to be used to help those waiting for organ donations, unless the person’s family objects to the same. In other parts of the world though, organ donation is an opt-in process, one that the person has to consent to when still alive.

Now, with the number of people waiting for organ donation rising by at least 8 percent every year, other nations like the United Kingdom and the USA are considering implementing the presumed consent policy so that lives may be saved when others are lost. But opponents of this move claim that move, rather than solving the problem of the dearth of organs available, will only complicate the already cloudy ethical and moral issues of organ donation.

Issues such as organ donation are tricky because they are successful only when public consent and support is forthcoming. So while governments may consider making presumed consent the law, some people think that it makes more sense to continue to increase awareness and get people to sign up on their own to be listed as donors. This way, there is no objection from families and organs from cadavers can be harvested as soon as possible and be transplanted into those waiting for them. Also, the cultural values of people and their sensitivity towards their last rites are preserved and not offended if they themselves consent to become donors while they are alive.

But, the reason why most people don’t enroll themselves in organ donation programs is not because they don’t want to; it’s more because they are so preoccupied with their lives that they do not have time to list themselves as donors. And this effectively makes them useless when dead, even though they would have preferred to help someone else live. This makes opt-out programs like presumed consent seem more practical, because the hundreds of people who die in road accidents and due to other causes can now save lives.

Presumed content works well in countries like Spain (which has the highest rate of organ donations) because they have a good system in place – people involved in transplanting organs are trained to deal with families and explain to them how the process works. They are able to gain consent without offending sensibilities, and this is why presumed content works.

While it’s true that presumed organ donation does increase the probability of saving lives, the policy has to be implemented and executed with care so as not to offend public sensibilities.

By-line:

This guest article was written by Adrienne Carlson, who regularly writes on the topic of phlebotomy training. Adrienne welcomes your comments and questions at her email address: adrienne.carlson1@gmail.com

“You Have the Power to Save Lives – Sign Your Donor Card & Tell Your Loved Ones of Your Decision”

Register to be a donor in Ontario or Download Donor Cards from Trillium Gift of Life Network. NEW for Ontario: recycleMe.org - Learn The Ins & Outs Of Organ And Tissue Donation. Register Today! For other Canadian provinces click here

In the United States, be sure to find out how to register in your state at ShareYourLife.org or Download Donor Cards from OrganDonor.Gov

In Great Britain, register at NHS Organ Donor Register

In Australia, register at Australian Organ Donor Register

Your generosity can save up to eight lives with heart, kidneys, liver, lungs, pancreas and small intestine transplants. One tissue donor can help up to 100 other people by donating skin, corneas, bone, tendon, ligaments and heart valves

Has your life been saved by an organ transplant? "Pay it forward" and help spread the word about the need for organ donation - In the U.S. another person is added to the national transplant waiting list every 11 minutes and 18 people die each day waiting for an organ transplant.