Organ donation is the process of giving up your organs, usually once you have died, so that they can be offered to other people who need them in order to live a healthy life. At any one time, more than 1,400 people in Australia are on the organ donation waiting list. This includes children.
It is important you register your decision about organ donation and discuss your intentions with your family. Speaking with your family, including children once they are old enough, is a very important step towards understanding your family’s wishes for end-of-life care.
Registering your intention means you can register your decision to donate, but also if you would prefer not to donate. Previously, you could register your intent for organ donation on your driver’s licence, however this system is no longer available in Australia other than for those people living in South Australia. The only place to formally register your decision is on the
Australian Organ Donor Register.
What is organ donation and why are transplants needed?
Organ donation involves removing an organ or tissue from one person and giving it to another person.
Because organs are usually responsible for a particular function in the body, once an organ becomes damaged or injured, and does not recover, it may perform this function more poorly, or sometimes not at all. Some organs or parts of the body can be removed without needing to be replaced (e.g. spleen) with little or no effect to a person’s health.
However, transplants are needed for some organs so that a person can continue to live a healthy life unassisted by medical equipment or medications. Organs can be damaged or injured for a variety of reasons:
- some children are born with a congenital condition which affects an organ (e.g. heart condition)
- an organ can fail due to illness (e.g. liver or kidney disease)
- some organs are affected by chronic disease (e.g. cystic fibrosis, diabetes)
Australia is a world leader in successful transplants and over one thousand lives are transformed across Australia each year. Organ donation is rarer in children as deaths are far less common than adult deaths. Although some adult organs can be donated to children, there are still more children on the waiting list for transplant than there are organs available.
What can be donated?
In Australia, organs that can be donated include kidney, liver, pancreas, heart, lungs and intestines. Tissues that can be donated include bones, cornea, heart valves and skin.
Sometimes there are cases where an individual may require a transplant of more than one organ, for example a kidney and a pancreas.
Why is donation important?
Donated organs can be transplanted to save someone’s life or may allow them to live unaided by medical equipment and allow them to live at home with their families.
Donated tissues can be used to dramatically improve someone’s quality of life (e.g. donated cornea can help others see and donated skin can significantly help those with extensive burns).
How does the organ donation process work?
Organ donation in Australia is a highly regulated process, and there are guidelines in place to ensure the sickest and most in need patient receives the organ first. If you choose to donate your organs, or your child’s organs, you won’t be able to choose who receives them. There is a slightly different process for living donors who wish to donate a kidney or part of their liver. These organs donated by living donors are usually offered to a friend or family member in need.
If you register to be a donor, organ donation will only happen after you have died in an Intensive Care Unit (ICU). Less than 1% of all hospital deaths result in someone donating their organs. It is very rare for someone to die in the circumstances that allow for organ donation.
- After consent for organ donation has occurred, the patient continues to be cared for in ICU just as they had previously.
- The Donation Specialist Nursing Coordinators work closely with the family to provide support and information.
- The Donation Specialist Nursing Coordinator communicates with transplant teams across Australia to align appropriate recipients. Recipients are allocated due to severity of illness, blood matching (the same or a compatible blood type) and tissue typing (testing to ensure the organ or tissue is compatible and suitable for transplant).
- When the patient (the donor) goes to the operating theatre, the operation is like any other operation.
- The operation does not disfigure the donor. When they are dressed, you are not able to tell they have had an operation.
- Funeral arrangements are not delayed due to the donation process.
- The donor family receives continued bereavement support if requested.
Who can become a donor?
Someone who has become very sick, is being cared for in an Intensive Care Unit (ICU) and will not survive their injury or illness, can potentially become an organ and tissue donor. Children and adults of all sizes and ages can potentially become organ donors. Children can sometimes donate organs to adults in need and some smaller adults can donate to children in need. The donation and transplant process is based on size and tissue matching.
Living donors must go through rigorous testing to ensure they are healthy, both physically and psychologically. Living donors can only potentially donate one kidney and part of their liver.
How can I register to be an organ donor?
Adults can register their decision to be an organ and tissue donor via the
Australian Organ Donor Register. You can register your decision to donate, but also your decision against donation. Registering your decision is important as it can help to reassure your family that this was your intention.
It is important that you inform your family of your decision to donate. Your family will be asked whether you wanted to be a donor before donation for transplantation can occur. It is also important for parents to have discussed the possibility of organ donation in the tragic event of their child becoming very unwell and not surviving.
Can my child register to be an organ donor?
Adolescents from the age of 16 can register their intent to be an organ and tissue donor, but you can only fully register from the age of 18. Children cannot be registered by their parents, but their family can consent to donation after they die.
When should I begin talking to my child about organ donation?
A recent RCH National Child Health Poll found that most parents thought it was appropriate to begin discussions of organ donation with their child around 13 to 14 years of age. Organ donation is covered by the Australian school curriculum at a secondary school level, for students at years eight and nine. Adolescents are usually 13 or 14 by the time they reach year eight. This is a good indication of when your child might be ready to discuss organ donation and understand the concept of transplants. However, each child is different, and your child may be ready before this age, depending on their level of maturity and ability to learn and understand the concept of organ donation.
Sometimes, organ donation may come up as a topic for discussion because a family member is in need of an organ transplant, they may have seen it on television, a friend or family member brought it up, or it may be highlighted in media and on social media platforms. This might be an opportunity to gauge your child’s thoughts, understanding and opinions on organ donation.
How should I talk to my child about organ donation?
Depending on the age of your child, you can provide developmentally appropriate information. This should be targeted to individual children and their ability to understand the concepts of death guided by any previous exposure to death.
Toddlers and pre-schoolers
Although it may not be a topic that you need to bring up with a pre-school age child, if a family member or friend becomes unwell and requires a transplant, it may be something you need to explain. It may also be appropriate if a family member or friend dies and organ donation is considered.
Use simple concrete language. Children at this age will not grasp the context of transplant, death or donating organs. You can refer to someone being very ‘sick’ and needing someone else to help them get better. You can also try using a reference to a situation they may understand (e.g. a car that is not working anymore and needs a new engine to make it start again). This is something a child may understand and be able to relate to.
School-age children
School- age children are able to understand more abstract concepts relating to death and dying, depending on their own experience. Depending on the individual child’s level of maturity and ability to grasp complex concepts, transplant, death and organ donation may be able to be explored in more detail. Again, drawing on situations that they can relate to can help to explain these concepts.
Children at this age have a greater understanding of how their bodies work and what might happen if an important part of their body stopped working. For example, a child in this age group may understand that:
- we need our heart to beat to keep us alive (they can also listen to their own heart beat)
- with each beat, the heart delivers blood around the body that makes everything work
- if the heart was to get very sick or stop beating, this would mean that the body would stop working.
Adolescents
Adolescence is a time when children start to question life in more abstract terms. They may have been exposed to various social media platforms where death and dying and transplantation is explored. This is a time when parents can share their own beliefs and wishes for their end of life care and explore their teenager’s views on the topic.
Key points to remember
- Let your family members know what your wishes are regarding organ donation and end of life care.
- As parents, know what your thoughts are around organ donation and transplantation in the rare event that your child was to become very unwell.
- Remember that there are resources available for information regarding organ donation if you would like to explore it further.
For more information
Common questions our doctors are asked
If I become a donor, or discuss the possibility that my child could be a donor, does that mean doctors will reduce or change the type of care they offer?
It is important to note that registering your intention to donate, or discussing donation when your child is unwell, will not have any effect on treatment options available, or the care given to your child. Organ donation has very strict criteria and it only occurs if that criteria is met. A decision to proceed with organ donation would only ever be made once all life-saving treatment options.
Will organ donation mean that our family can’t have a funeral for my child?
Funeral arrangements will not be affected by the process of organ donation. Any funeral arrangements can take place as they would for any death.
What if it is against my religion to donate organs?
Organ donation is an individual decision and many religions support, or do not oppose organ donation. If you’re unsure of your religion’s position, it is best to discuss this with your spiritual advisor.
Will organ donation prolong my child’s suffering or cause any further pain?
The process of organ donation is explained in detail to consenting families, including time frames and decisions around when the donation operation will take place. The child’s care is not compromised in any way.
It remains the care team’s utmost priority that the child is kept comfortable and the family is well informed throughout the entire process. Pain medication is administered by the intensive care team in the same way that it would be given to any child at the end of their life.
Can I spend time with my child following the organ donation operation?
Yes. Families wishing to spend time with their child after the donation operation is very important. Time with your child will be facilitated with support from staff, Donation Coordinators, social work and any other important people that the family wish to be present.
Developed by The Royal Children's Hospital Paediatric Intensive Care Unit. We acknowledge the input of RCH consumers and carers.
Developed October 2019.
This information is awaiting routine review. Please always seek the most recent advice from a registered and practising clinician.
Kids Health Info is supported by The Royal Children’s Hospital Foundation. To donate, visit www.rchfoundation.org.au.