DonateLife | Australian Organ & Tissue Donation and Transplantation Authority

Your Questions Answered

 

What is organ and tissue donation?

Organ donation is a medical procedure. It involves removing organs and tissue from a donor and transplanting them into someone who, in many cases, is very ill or dying. The donation saves life or significantly improves quality of life. Most transplants occur when the donor dies. In some cases living donors may give one of their kidneys or part of their liver to a recipient.

Australia has a world class reputation for successful transplant outcomes. One organ and tissue donor can transform the lives of up to ten people and significantly improve the lives of dozens more:

  • a lung transplant can save the life of a child
  • a kidney transplant can mean a person no longer needs to spend several hours, several times a week, hooked up to a dialysis machine, and
  • a corneal transport can give the gift of sight.

Around 1600 people are officially waiting for an organ transplant at any time in Australia. The first step to becoming an organ and tissue donor is to discover the facts. You can then make an informed decision and register your wishes on the Australian Organ Donor Register. Every Australian family should know their family members' donation wishes, in case the situation arises.

 

Who can donate?

Almost anyone can donate organs and tissues. Age, health and lifestyle are no restriction. The determining factors are where and how the donor dies and the condition of the organs and tissues. Specialised health professionals assess each person at the time of death to decide which organs and tissues are suitable for donation.

People who drink or smoke may not be able to donate their liver or lungs but may still be able to donate other organs and tissues. People in their 80's have saved the lives of much younger people. People with cancer have been able to donate tissues.

Only a few medical conditions, such as transmissible diseases like HIV, may prevent someone being a donor. A person may not be able to donate for 12 months after having a tattoo.

 

Why is there a shortage of organs and tissue?

The Australian Government's World's Best Practice National Reform Agenda on Organ and Tissue Donation for Transplantation aims to increase the number of organ and tissue donors.

Few deaths in hospitals each year occur in such a way that organ donation is possible - that is, in the Intensive Care Unit of a hospital, where a ventilator can artificially keep organs functioning until they can be donated.

An important part of increasing Australia's donor rate is ensuring that Australian families know each others' wishes about organ and tissue donation. Many people think that deciding to become an organ donor is a private decision. They do not always realise that even if you have registered your decision on the Australian Organ Donor Register, your family will still be asked to confirm your donation decision before donation for transplantation can proceed.

 

What can I donate?

In Australia you can donate your organs - heart, lungs, liver, kidneys and pancreas - and tissues - heart valves and pericardium, corneal and eye tissue, bone and related musculoskeletal tissue and skin.

 

 

Can I decide what I donate?

Yes. You record which organs and tissue you want to donate on the Australian Organ Donor Register. It is important that you discuss your wishes with your family.

 

How do I register to be a donor?

Join the Australian Organ Donor Register, the national register administered bythe Department of Human Services (Medicare) Australia. To join the register, go to www.medicare.gov.au or www.donorregister.gov.au, call 1800 777 203 or visit any Department of Human Services (Medicare) Service Centre.

Only authorised medical/healthcare personnel involved in organ and tissue donation have access to the Australian Organ Donor Register, so your privacy is secure.

It's important to talk to your family about your decision to donate because donation will only proceed with their consent - regardless of whether you are registered.

Read more: Making the Decision to Become an Organ Donor

 

Does my family need to know that I wish to be a donor?

Yes, this is very important. Donation will not go ahead without the consent of your family. About 40% of families don't consent to organ donation. Mostly, this is because they did not know the wishes of their loved one.

Read more: Discuss Organ Donation with your Family

 

Can my family say no, even if I wish to donate?

Yes. Your family will have the final say. This is because:

  • the hospital staff do not want to cause your family unnecessary distress at a distressing time, or
  • you may have changed your mind and told your family, but not changed the Register.

So talk about your decision to donate with your family and leave them in no doubt about your wishes.

 

What happens if my family can't be contacted when I die?

All efforts will be made by the hospital and, if necessary, the police to contact your family and tell them you are in hospital. If your family cannot be contacted, a designated officer will try to contact your friends or acquaintances to see if they knew your donation wishes.

The Australian Organ Donor Register will be checked. The officer will then make a recommendation to the medical team.

 

Can I register if I'm under 18 or can I register my children?

You can register an 'intent to be an organ and tissue donor' with the Australian Organ Donor Register from the age of 16. You can only fully register from the age of 18. Children cannot be registered by their parents, but that does not prevent them from being donors as the family can approve donation.

If you are under 18, or have children, a frank discussion about donation ensures the family is prepared if they need to make the decision.

 

Can I donate my body to science after donation?

Yes. It is possible to donate your body to science after or if organ and tissue donation is not possible. Donation for science is handled directly by Universities. Each University donation program is different and may or may not be able to arrange to receive a body after organ donation has proceeded, if this is your wish. You would need to contact each University to ask them about their arrangements. 

For ACT residents, you can find out about body, organ and tissue donation for medical teaching by visiting the website at www.medicalschool.anu.edu.au.

 

Is organ and tissue donation against my religion?

Most religions, including all major religions, support organ and tissue donation and transplantation as acts of generosity and merit because they benefit others.

Read more: Organ Donation and Your Religion

 

How does the donation process work?

When someone dies in circumstances where they can become an organ donor, the intensive care medical team raises the possibility of donation with the family. Sometimes the family raises the topic of donation themselves.

The Australian Organ Donor Register is checked. If the person registered ‘no', donation will not proceed. If the person registered ‘yes' or had not registered, a DonateLife donor coordinator will meet the family to talk about donation.

The family is given time to make a decision. If they agree to donation, there is some paperwork to confirm the donation and which organs and tissue may be retrieved. After the organs and tissues are donated, the donor coordinator keeps in touch with the family to tell them about the success of the transplants and to provide support for them during their time of grief.

 

Can I choose who gets my organs and tissue?

No. Organ and tissue donation for transplantation is based on the concept of altruism. There are strict guidelines for selecting organ and tissue recipients, based on who is the best match for the organ and tissue.

The only exception is if you decide to be a ‘living donor' and give a kidney or part of your liver to a family member or friend.

If you participate in the Australian Paired Kidney Exchange (AKX) as a living donor, you will not be able to choose the recipient, but you will know your family member or friend will receive a kidney.

 

How do doctors know I'm dead?

There are two causes of death - brain death and cardiac death. Most people die a cardiac death, where they stop breathing and have no heart beat. Most cardiac deaths mean organ donation is not possible, though tissues can be donated.

Brain death occurs when the brain is so badly damaged that it stops functioning permanently, usually as the result of bleeding in the brain, stroke, infection or an injury to the head. Your organs will not be removed until two senior doctors have separately tested and confirmed that you are brain dead. If you die a brain death in hospital, you can be kept on a ventilator that keeps your organs functioning until donation can take place.

Read more: Organ Donation & Tissue Donation after Death

 

What support will my family get?

The Intensive Care Unit team caring for you and the DonateLife donor coordinator will give your family as much support as they need during and after the decision to donate. Your family will also have access to free bereavement counselling.

The DonateLife donor coordinator will be the point of contact for your family from the time donation is first discussed. This coordinator will provide information about donation, answer any questions, help with paperwork and coordinate the medical procedures required prior to donation.

The DonateLife donor coordinator is an advocate for you and your family. They provide the link between your family and the medical team and will help your family after the donation, particularly with arranging a private farewell and, if the family wishes, a viewing of the body.

Later, the coordinator will contact your family with information on the outcome of the donation and details of support offered in your state or territory. The coordinator will give information on how to write to recipients if the family wishes.

Read more: Donor Family Support

 

What is a 'living donor'?

In Australia, living donors are able to donate a kidney or part of the liver. Most living donors are family members or close friends of the recipient. The operation will not proceed until strict medical and legal criteria have been met. There must be no evidence of coercion, monetary payment or reward and the donor must have full knowledge of the risks and benefits of the donation.

Bone tissue can also be retrieved from a living donor. For example, tissue can be taken from a person's joint that has been replaced by a prosthetic, such as a hip or knee replacement. Donations of bone marrow are coordinated through the Australian Bone Marrow Donation Registry.

 

What is paired kidney exchange?

The Australian Paired Kidney Exchange Program (AKX) works to maximise the number of live kidney donor transplants. Suppose a person wishes to give a family member or friend a kidney but can't because they have a different blood type or incompatible tissue. The AKX program pairs them with another couple in the same situation.

For example, Peter wants to donate a kidney to his wife Mary but he has blood type A and Mary is blood type B. They register with the Australian Paired Kidney Exchange Program. Meanwhile, Julia wants to donate a kidney to her son George but she is blood type B and George is blood type A. Through the program, Peter anonymously gives George a kidney and Julia anonymously gives Mary a kidney.

Read more: What is paired kidney exchange?

 

Can I have a normal funeral?

Yes. Funeral arrangements are not affected by organ donation. Organ and tissue donations will happen quickly after you die. You will be able to have an open casket funeral. Your body will appear as if you had undergone normal surgery. You will be clothed for the funeral, so stitches won't be visible.

 

What if there needs to be an autopsy or coronial investigation?

A coronial investigation does not usually prevent a person from being a donor. If a person's death requires a coronial investigation, the coroner must consent to the organ and tissue donation. Usually, the DonateLife organ donor coordinator seeks this consent. Organs and tissue are retrieved before the autopsy.

 

Who needs transplants?

People requiring organ transplants are usually very ill or dying and range from young babies and children through to older Australians.

Reasons for transplants include:

  • kidney transplant as a result of disease or damage from an accident or trauma
  • heart transplant as a result of an inherited genetic condition, dilated cardiomyopathy, infection or illness
  • lung transplant for genetic conditions such as cystic fibrosis, or illnesses that damage lungs, like emphysema
  • liver transplant following conditions such as haemocromotosis, primary sclerosing cholangitis, autoimmune disease and hepatitis C or damage from an accident, sporting injury or assault. Children often require a liver transplant because they have the congenital disease biliary atresia
  • heart tissue to repair congenital defects or replace defective valves due to rheumatic fever, degeneration or infection
  • pancreas transplant as a result of disease, usually diabetes
  • corneal transplant to restore sight in a partially or completely blind eye
  • skin graft to treat burns or infections
  • bone tissue transplant to help repair a fracture, to strengthen a hip and knee joint replacement, or to replace bone lost as a result of injury or tumour. In children and teenagers, bone tissue can help curvature of the spine (scoliosis).

People in end-stage liver, heart or lung failure will die unless they have a transplant, while people with kidney failure can usually be placed on dialysis until a kidney becomes available. This requires them to have dialysis up to eight hours a day, several days a week.

 

How are transplant recipients chosen?

The process that allocates organs to transplant recipients is designed to be as fair and equitable as possible. At present, allocation is guided by protocols developed by the Transplantation Society of Australia and New Zealand (TSANZ) and the Australasian Transplant Coordinators Association (ATCA). Transplant waiting lists are managed by different groups according to the organ involved and the state or territory where the recipient resides.

When an organ (other than kidneys) becomes available for donation, it is offered to transplant units in that state. If there is no suitable recipient, the organ is offered to transplant units in other states and territories in a pre-determined order designed to promote equity.

Criteria include:

  • how long the person has been waiting for a transplant
  • their immediate medical condition
  • the urgency for a transplant
  • how well the tissue/organs match the person
  • whether the organ can be made available to the person in time.

Organs such as the heart, lungs, liver and pancreas are matched to recipients by blood group, size compatibility and urgency. Age and sex are not relevant. Kidneys are matched by blood group and tissue compatibility through the computerised National Organ Matching Service, administered by the Australian Red Cross Blood Service. Kidneys are offered to the best suited recipient, regardless of where they live.

There are no formal waiting lists for tissues, though shortages can occur. The Authority is working with TSANZ and other stakeholders to develop a new national framework for organ and tissue allocation. It is expected that national coordination will improve the availability of organs.

 

How long do people wait for transplants?

Waiting times are usually between six months and four years but there are cases where the recipient must wait even longer. There is a strong awareness that in most cases the longer the delay in receiving a transplant, the greater the risk of deteriorating health.

 

What is Australia's transplant success rate?

Australia has a world class reputation for successful transplant outcomes. In 2012, 1,052 Australian's received a transplant due to the generosity of 354 deceased organ donors.

Tissue transplants and grafts are more common, including 1,942 corneal transplants in 2012. Transplants not only improve the quality of people's lives but also cut the nation's medical bill by reducing the number of long-term treatments.

Read more: Facts and Statistics