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Organ Donor Wants NZers To Increase Donor Levels

MEDIA RELEASE

September 16, 2003

Live Organ Donor Wants New Zealanders To Increase

Donor Levels

Grandmother who gave part of her liver to save her infant grandson's life teams up with former Prime Minister Sir Geoffrey Palmer to lobby for improvements in New Zealand's organ donor rate.

Research shows New Zealand has one of the worst organ donor rates in the world at 9.5 donors per million people despite a large and growing list of seriously ill people awaiting transplants of hearts, lungs, livers, kidneys and other organs.

Hoping to change this situation is a Tauranga grandmother who earlier this year gave part of her liver to save the life of her infant grandson who nearly died when he was a baby from liver failure.

Though it is rare for people to become live donors of body organs, it is more likely that they can become donors after their death. Suzanne Callander, from Tauranga, is campaigning for people to register themselves on their driver's licence as organ donors. She wants to improve the rate of cadaver organ donations which in practice means organs are taken from people who die after an accident or major illness while in hospital intensive care units where they are on ventilators.

She will tell her story before the health select committee on Wednesday, September 17. Also appearing before the committee is Wellington public law specialist and former Prime Minister Sir Geoffrey Palmer who will present research comparing organ donor rates and legislation in New Zealand and other countries. The research was commissioned with assistance from Roche Products (NZ) Ltd.

The research shows that last year only 38 people who died while on life support systems in hospital donated their organs to save another person's life. Yet the waiting list for transplants was 400 at the time.

New Zealand's rate of organ donation is 9.5 per million people compared with Spain's 39.6, United States 22.3, United Kingdom 13, Australia 10.6 (South Australia 20).

Encouraging public debate and education on the issue could improve this country's organ donor rate as people would become more comfortable about discussing the matter with family and friends and making their wishes known, the group believes.

The Chen Palmer research points out that there are other issues that make the New Zealand situation complex. One is that while people can register themselves as organ donors, the law has been interpreted so that on their death relatives have the final say.

Also, New Zealand has a lower ratio of intensive care beds than other countries and, for many reasons, intensive care staff are often reluctant to ask grieving families to donate the organs of a relative who has just been declared dead.

The research highlights the National Donor Co-ordination Office as an important key in improving matters. The two-person office, which liaises between organ transplant surgical teams and hospital intensive care units for the retrieval of organs from dead people, would benefit from an increase in staff so, among other things, it can provide more training for medical staff on how to approach bereaved relatives.

Suzanne says her grandson was diagnosed at age four weeks in 2001 with biliary atresia, the failure of the ducts to drain bile from the liver to the bowel. An operation to correct the problem was unsuccessful and Auckland liver transplant surgeons Professor Stephen Munn and Associate Professor John McCall told the family a liver transplant was needed urgently.

His condition deteriorated over the following year as he waited in vain for a liver from a dead person to become available. Eventually a live donor was sought as the liver is able to regenerate itself and only 25 percent of an adult's liver is required to provide a new liver for a small child.

Suzanne volunteered and it was found that her blood group matched his. That and her good level of fitness made her an ideal live transplant prospect. The transplant was a success and he now shows no signs of rejecting his new liver though he will be on anti-rejection drugs all his life.

"He looks like any normal little boy now with so much energy and personality.

"People ask me why I did it. In many ways, New Zealanders are extremely generous people. But when it comes to organ donation, we seem to fail badly.

"There are hundreds of very sick people waiting for life-saving operations. Many die waiting. I could not have forgiven myself if my grandson had died waiting for a cadaveric donor when I knew I could have done something to save him."

Sir Geoffrey Palmer says of his research, "It's fascinating that New Zealand comes out so badly. One of the things we hope to do with this project is to improve the organ donor rate. However, it's a complicated thing to do because the issue has so many facets.

"But unless we get the donor rate up, we are not going to be able to deliver better health for people. And that's a simple fact - we want to see our rate go up to 15 donors per million population within five years."

He says the legal frameworks for organ donation in other countries vary though the laws of most provide either for a system whereby express consent is required or one of presumed consent in which people must register their objection to having their organs removed.

"The important thing to realise is that the cultural attitudes of people are probably more important than their laws," he says.

"What is involved here is a gift relationship. That's at the heart of this issue. I feel we need to shine a searchlight on the area so there can be some public debate."

Sir Geoffrey is amazed at Spain's high donor rate though their success is a combination of legislation that presumes consent unless a person opts out, they have an effective and popular transplant coordination agency and their intensive care staff are very proactive at encouraging families present at the death to cooperate.

"But it depends on the cultural approaches in intensive care units and the resources available," he says. "Everyone organises their health systems differently."

For New Zealand intensive care staff and New Zealand in general where the notion of informed consent in health matters is written into the law, the presumptions of the Spanish system would pose ethical problems.

Sir Geoffrey says the treatment of the dead body has enormous significance for spiritual, cultural and religious reasons and one person's desire to "live on" in the body of another may contrast with someone else's objection to having their body tampered with.

Each country has its own unique issues. One of New Zealand's is the Maori tradition to consult widely within the whanau before major decisions are made.

"Maori values have to be respected," Sir Geoffrey says. "We have to find sensitive ways of handling these."

However, Sir Geoffrey says, that despite the complexity of the issues, he would be surprised and disappointed if New Zealand couldn't do something to improve its donor rates.

He notes in his research that, while many people passively agree with the concept of organ donation, it is another matter altogether for them to actively do something about it. Resolving that issue is a priority, he says. One factor is that the system of registering people as donors on their driver's licence is not working as well as it could be.

"From my way of thinking, public education and public debate may be the most important thing of all." He says it is timely that the United Kingdom and European Union are considering reviewing their donor laws and New Zealand can learn from them.

Summary of Chen Palmer & Partners, public law specialists, Wellington research:

Organ Donation: a comparative legal analysis and options for change in New Zealand.

There is a worldwide shortage of organs and tissues available for transplantation. New Zealand has one of the lowest rates with 9.5 New Zealanders per million donating organs in 2002 compared to Spain 39.6, US 22.3, UK 13, Australia 10.6 (South Australia 20).

Why so low? This is the result of our laws affecting organ donation, lack of public awareness of the acute nature of the organ donation situation, what organ donations actually entail, lack of funding for the National Transplant Donor Coordination Office, the day-to-day practices of medical staff in the hospital intensive care units.

Our law says the person lawfully in possession of a body after death - usually the hospital superintendent - may authorise donation if this is in accordance with the wishes of the deceased. On the other hand they may decline to allow organ donation if the family is opposed to the idea.

The potential donor has three ways of registering his or her desire to donate organs: a verbal request in front of witnesses during his or her last illness, in writing, or by registering as a donor through the driver's licence system.

Options for Reform:

- Public awareness and education is vital to improvements in organ donation. In many countries the requirement for public education has been written into the legislation. Debate should highlight the issues surrounding the carrying out of the wishes of the individual versus the wishes of the relatives left behind.

- Re-examine the system of using the driver's licence to indicate whether people wish to become a donor. Not all people drive. It's not easy to make changes after the licence is issued and before the 10-year lifetime of the licence is up.

- Alternative methods. Consider the US system of requiring hospital staff to inquire as to a person's donor status when they visit hospital and for this information to be included in the person's medical records. Or the German method of requiring insurance companies to periodically send out donor cards to clients.

- The New Zealand law requires clarification and a reconsideration of its underlying policy. The current law is 40 years old and has been bypassed by advances in surgical procedures and success rates of organ donation and transplant.

- Improvements in intensive care procedures and training for medical staff dealing with relatives of people who have suffered brain death in the ICU. There are also comparatively few intensive care beds in New Zealand compared to other Western countries. This may limit organ donation because of the practice of reducing admission to patients considered to have a poor prognosis and who therefore are not given intensive therapy right up to the time of death. New Zealand has 69 intensive care beds per million people compared to France 384, Australia 88, Spain 148, US 305.

INTERNATIONAL ORGAN DONATION COMPARISONS AND LEGISLATION

Chen, Palmer Report

SEPTEMBER 2003

New Zealand

The Human Tissue Act allows a person to request that his or her whole body, or specified parts of it, be used after death for therapeutic purposes or for purposes of medical education or research.

A major difficulty with the Human Tissue Act is that a person's request to become a donor is not expressed as being mandatory upon that person's death. If relatives are opposed to the removal of the organs, the hospital superintendent may decline to authorise the removal of such body parts. Interpretation of the Human Tissue Act places the preferences of the living relatives above the preference of the deceased.

Australia

Australia does not have a national law on organ donation. Each state and territory has its own law but generally they follow a similar pattern. Designated officers of hospitals are authorised to order the removal of organs if it is ascertained that the deceased had consented to this. If there is no such consent, the designated officer may still remove the organs with the consent of the deceased's next of kin. The next of kin may override the express wishes of the deceased.

Australia's organ donor rate is similar to New Zealand's, except for South Australia which has twice as many donors per million (20) than either country. Because South Australian laws are essentially similar to other Australian laws this is attributed to the role that intensive care clinicians have played in maintaining intensive care patients and requiring donation, as well as emergency department procedures.

United States of America

The Uniform Anatomical Gift Act 1987 established a legal right for people to donate organs upon death and make that right superior to the rights of anyone else.The law eliminates the need for the consent of a donor's family. However, many organ procurement organisations refuse to remove organs with the consent of kin, which runs contrary to the intent of the law.

At 22.3 donors per million people, the organ donation rates in the United States are more than double the rates in New Zealand. In fact, the United States has the highest donation rates of any country that does not operate under presumed consent laws.

An important feature of the United States law is that it requires organ donation to be discussed with every person admitted to hospital. An affirmative response is recorded on a person's medical records. When a patient with no documented choice dies, the hospital administrator is required to ask family members to make a gift.

United Kingdom

The United Kingdom organ donation statistics are slightly higher than those for New Zealand at 13 per million people. This rate is still relatively low, however. The United Kingdom laws are very similar to those in New Zealand, which suggests that our own rates could be higher, even with no amendment to the New Zealand Human Tissue Act.

Donor cards have been employed in the United Kingdom for years and have the advantage of listing specific body parts and organs from which a donor may choose to donate. These cards have always been produced by interested bodies, such as charities, and as such are not specifically referred to in the legislation. Like driving licence consents, they are merely an indication of a deceased person's wishes. Thus, consent will still be sought from relatives.

Canada

Each state has its own law. Ontario law states that once a person expresses a wish to donate organs in writing or orally in front of witnesses during their final illness, then that wish is binding unless there is a belief that it might have been withdrawn. Other states have similar laws with some variations.

The Canadian organ donation statistics are approximately 15 per million people, which is around 50% higher than the New Zealand rates of donation. The Canadian laws are more modern than their New Zealand equivalent, and clearly place more emphasis on the wishes of the deceased than the New Zealand legislation does.

Germany

Insurance companies are the vehicles for disseminating information on organ donation to the public, and do so on a regular basis asking them to declare themselves willing to donate organs.

If no written consent or refusal exists then next of kin can make the decision, but only if they have been in contact with the deceased within the last two years.

The German organ donation rates are only marginally higher than those in New Zealand, however, at 12.2 per million population.

Chile

Chile uses its mandatory national identity paper scheme as the means of inquiring of every person whether he or she consents to organ donation. Figures not available.

PRESUMED CONSENT

Many European countries have a system of "presumed consent" for organ donation. This means that in the absence of written instructions to the contrary, it is presumed that each person agrees to donate their organs on their death.

France

First to adopt presumed consent, in 1976. The Caillavet Law authorizes the removal of organs from dead adult people (21 years and over) who have not declared their opposition to this during their lifetime. This concept was reaffirmed in 1994.

France's donation rate is 17 per million population. It might be thought this rate would be higher but French law requires a medical practitioner to make a reasonable effort to ascertain whether a written refusal exists, and this usually involves consulting the patient's family. In practice this means the French system operates more as a vountary donation system controlled by the family.

Belgium

Belgium has one of the highest organ donation rates in the world, with 25.6 donors per million population. The law in Belgium allows physicians to remove organs without the consent of a person's relatives. However, most Belgian medical practitioners also consult with family members and usually act in accordance with the family's wishes.

It should be noted, however, that organ donation rates in Belgium increased by 183% after three years of the introduction of the presumed consent laws. Only two percent of the population in Belgium has chosen to opt out.

Austria

Austria lies third in organ donation rates, behind Spain and Belgium with 24.3 donors per million population.

Medical practitioners in Austria are not under any obligation to look beyond a patient's medical records to ascertain a refusal to donate. Unless the potential donor is a minor or a foreigner, the medical practitioner does not discuss the donation with the family. The family can object by raising the issue on its own, but the doctor is free to ignore this.

Spain

The country with the highest rate of organ donations is Spain. This country boasts 39.6 donors per million population. Spain also has a presumed consent law, but like in France, its laws are not strictly followed.

The reason for Spain's success is therefore likely to be the result of social factors, in addition to the legal framework in which their organ donation scheme operates. A large part has been played by the popular image of the national transplantation organisation coordinating committee whose transparency, fairness, and effectiveness have contributed to people's generous attitudes to organ donation.

In addition, there is a large and efficient infrastructure for organ procurement and transport. Intensive care staff are coercive when discussing donation with next of kin and will ask several times if the first time brings a refusal.

Brazil

Brazil had a law making every citizen an organ donor after death but this was abolished in 1998 because doctors were unwilling to remove organs without family consent and because there was no structure for collecting organs and notifying potential recipients.

Brazil's case proves presumed consent can only be successful if the public supports it. In this case, many people feared their organs would be removed before they were clinically dead and they rushed to record their objection to being a donor.

Recent initiatives have seen increased funding for transplantation and a deal between the Government and airlines to transport organs and transplant teams round the country for free.

Tuscany

After adopting the Spanish model for organ donation in 1999, the Italian region of Tuscany doubled its donation rate to 26.9 donors per million inhabitants. A key feature of the model is its local transplant coordinators and excellent training of all staff involved. The combined donation rates for Northern Italy and Tuscany are second only to the rates in Spain.

Singapore

Singapore has a "partial" presumed consent law under which all mentally competent citizens or permanent residents between the ages of 21 and 60 who are victims of fatal accidents are considered kidney donors when they die, unless they opt-out during their lifetime by signing a written objection form. The implementation of this law markedly improved the number of kidneys available from five to around 31 a year.

MEDIA RELEASE

September 16, 2003

Donor Rate Increase Possible, Says National Co-ordinator

Talk it over with your family. That's the message Janice Langlands of the National Donor Coordination Office has for people who'd like to donate their organs when they die to help sick people gain a new lease on life.

It's the family that hospital intensive care staff approach after a patient on life support is declared brain dead - and therefore legally dead despite being on a ventilator - to ask their consent to the dead person's organs being removed so someone else can have a chance to live.

"The reality is that for families this is one of the worst moments in their life - learning that a relative is brain dead. Yet it is around this time that they are offered the option of donating their relative's organs," Ms Langlands says.

"That decision is made easier if there has been prior family discussion and they know they are carrying out the wishes of their relative. I believe society does think organ donation is a good thing and our low donor rate could be increased. But the problem is we are not good at talking about what we want when we die."

In New Zealand, the family is given the final say on whether organs are donated when a close relative dies even though individuals may have registered as donors on their driver's licence.

This country has one of the lowest organ donor rates in the world at 9.5 cadaver donors per million population. Last year there were 38 cadaver donations yet nearly 400 patients were on the waiting list for organs, mainly kidneys.

A 1999 audit showed only 55 percent of the families asked by intensive care staff give their consent to organs being taken for transplant from a dead relative, and in many other cases staff did not feel it appropriate to discuss the issue with the families.

If the family is unsure what to do, hospital staff will check with the Land Transport Safety Authority's driver's licence database to see if the person is registered as a donor. The information may or may not be printed on their licence card, depending on when they registered the information.

Currently only 42 percent of licensed drivers are registered as donors.

With the new system of driver's licence renewals, people are now given a pamphlet on organ donation encouraging them to discuss the issue with family.

"Statistics show that the older people are, the less likely they are to register as donors," Ms Langlands said.

"People tend to think that if they are over 60, we won't want their organs. But we do. People don't realise they can donate their organs no matter how old they are."

Even if their licence is not up for renewal, people can register as a donor by contacting the Land Transport Safety Authority to have the information recorded in its database. This does not cost anything. However, if they want a new licence issued with the word "donor" on it, that will cost a small fee.

The National Donor Co-ordination Office was set up in Auckland in 1987 when Green Lane Hospital began heart transplants.

Today two co-ordinators deal nationwide with donations from brain-dead patients of heart, heart valves, lungs, liver, kidneys, pancreas, eyes for corneal donations, and bones.

Coordinators Janice Langlands and Dawn Kelly, both nurses with previous experience of looking after patients who needed or had been given an organ transplant, also conduct study days for intensive care and operating theatre nurses involved with organ donations to keep them up to date.

They keep in touch with the families of donors to let them know what has happened to the donated organs. They also pass on the thanks of the surgeons and the child or adult who received the organs and will give some details of the recipient, though anonymity is retained for both the donor's family and the recipient.

Organs to be donated are first offered to New Zealand transplant units but, if no potential recipients match the donor in blood type, then the organs are offered to Australian units. A reciprocal arrangement for donated organs exists between the two countries which also share a specialist training programme called Adapt for intensive care medical and nursing staff.

As part of this, nurses and doctors are trained in how to talk to anguished families and explain the terminal severity of their injury or illness, what brain death is and how the dead person will be kept on a ventilator so their organs remain in good condition.

"It requires specialised knowledge and skills to guide and support a family through that process," Ms Langlands says.

A typical donation process

A patient on life support in intensive care at Wellington Hospital is declared legally dead after two tests for brain death are conducted at least two hours apart. The relatives agree to their dead relative's organs being donated. The dead person is kept on a ventilator so that blood and oxygen continue to circulate through the organs.

The hospital calls the National Donor Coordination Office in Auckland with medical and other details of the dead person. The office immediately contacts the Auckland-based heart and lung transplant unit, the liver transplant unit and the National Kidney Allocation System which also allocates pancreas donations.

Some patients awaiting transplants match the dead person's blood group.

The donor coordinator liaises with Wellington Hospital and arranges transport and any other details needed to smooth the way for two transplant retrieval teams of surgeons and nurses - the heart and lung retrieval team and the liver, kidney and pancreas retrieval team - to travel to Wellington to perform their operations.

The coordinator travels with them to Wellington Hospital where she meets the donor's family and sets up future contact with them to keep them informed about what has happened to their loved one's organs and how the sick child or adult they have helped is getting on.

The retrieval teams restore the donor's body to a normal appearance so that relatives can see him or her and take the body to the funeral home for preparation for the funeral.

The teams arrive back at their respective transplant units where other teams are waiting ready to transplant the organs into sick patients. No time is wasted because a heart only remains in good condition outside the donor's body for six hours; a liver can be stored for up to 12 hours.

History of organ transplants in New Zealand

1965: Kidney transplants begin and are now done at Auckland, Wellington and Christchurch hospitals.

1987: Heart transplants begin at Greenlane Hospital, Auckland.

1989: New Zealand begins sending donated livers to Australia for transplants, including for New Zealanders who have to travel to that country for the operation.

1993: Lung transplants begin at Greenlane Hospital.

1998: Liver and pancreas transplants begin at Auckland Hospital.

2002: Liver transplants for children under seven begin at Auckland Hospital.

Number of cadaver organ donors in New Zealand

1993: 34

1994: 35

1995: 35

1996: 36

1997: 42

1998: 46

1999: 39

2000: 41

2001: 37

2002: 38

National Organ Donor Coordination Office

Coordinators: Janice Langlands & Dawn Kelly

0800 4 donor/ website www.donor.co.nz/ email: donornz@adhb.govt.nz


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