NSW Government NSW Health
South Eastern Sydney Local Health District
nsw health

Questions and Answers

The expanding sections below provide access to the most commonly asked questions.

(Click section headings to expand or hide report details)

» Why has the NSW organ donor register closed when it had a high number of registrations already?


NSW was the only state in Australia with a stand-alone system for registration of consent to organ donation via the NSW Roads and Maritime Service (RMS) - or the old RTA – driver licence application process.
 
Residents in all other states access the Australian Organ Donor Register to register their decision regarding organ donation after death.
 
The process of driver licence renewal is not ideal for this kind of decision. It provides minimal opportunity to either give any detailed information about deceased donation or to prompt discussion of the individual’s decision with their family.
 
Having two systems for registering organ donation decision was confusing for both the clinicians at the time of decision-making in hospitals and also for members of the community.
 
Streamlining to a single national register – the Australian Organ Donor Register – will enable people to consider whether they want to be organ donors after they die in an unhurried environment with the information they need. It will also make it simpler to check whether a person had previously registered their decision regarding organ donation.
 
NSW Roads and Maritime Services register data will continue to be available for 5 years after drivers’ licence registrations cease in NSW, via a snapshot database managed by the NSW Organ and Tissue Donation Service.
 
NSW residents are encouraged to register on the Australian Organ Donor Register over the 5 years, rather than relying on the snapshot database.

 

» Why is registration important?


Registration of your organ donation decision coupled with family discussion provides the best way to optimise community participation in organ donation.
 
For those people in our community who do not have family available at the time of their death, registration is an important way to ensure that their wishes will be carried out.
 
A “yes” registration will allow organ donation to go ahead even if there are no family members available to consent to it.  
 
Registration of organ donation consent also supports families in their decision making. In situations where an individual’s decision about organ donation is recorded families generally support organ donation proceeding.

 

» How do people register consent for organ donation now the NSW RMS organ donation drivers’ licence register is closed?


There are 3 ways to register your decision regarding organ donation on the Australian Organ Donor Register:

  • To register online visit www.donatelife.gov.au/decide
  • call 1800 777 203
  • fill out a form at any Medicare office

Local GPs may also have registration forms. Only people aged 16 years or older can register their organ donation decision on the register.
 
If a person has previously registered their decision by ticking a box on their driver’s licence renewal, it is important they also register on the Australian Organ Donor Register, as it is the only national register and details can be linked to their Medicare number.

 

FAMILY DISCUSSION

» Why is family discussion about organ donation important?


When your family knows your organ donation decision they are more likely to accept and support that decision.
 
As part of the process of registering on the Australian Organ Donor Register you are asked to talk to your family. 
 
Even though you have registered your consent to organ donation, in the event that you are a potential organ donor, your family will be asked about your most recent wishes. If you have discussed your decision with your family, they can confidently support you becoming an organ donor.
 
If you had previously registered that you did not want to be an organ donor but have changed your mind, your family can tell the hospital that you had changed your mind and you can still become a donor. This is why it is so important you discuss your decision with your family.

 

FAMILY ROLE IN ORGAN DONATION

»What role do families have in agreeing to organ donation?


Even if a person has registered their consent to organ donation, the family is always asked to agree to it at the time that organ donation is being considered.
 
Your family will also need to give information about your health and lifestyle and without that help donation will not be possible. At a time of great stress around someone’s death this is a difficult conversation and decision to make. Knowing your decision makes it an easier for your family.
 
There is no legal requirement in NSW or nationally to allow a family to refuse organ donation where the deceased person has previously consented.
 
In NSW there are around 7-10 cases per year where the family objects and the donation does not go ahead, despite the person having registered consent.

Clinicians honour the family’s refusal in these very difficult cases generally because the family is experiencing extreme grief and distress at the death of a loved one. 

 

» What will be done to try to reduce family refusal where a person has consented?


Education rather than legislation is a more appropriate means of addressing these situations.
 
Informing community members of the benefits of organ donation and transplantation is important.
 
Donation specialists in hospitals are also being given extra education on how to better respond to a family’s grief and to assist the family in making an informed decision about donation.
 

 

» What can clinicians do to support families in their decisions?


Increasing the skills of clinicians to have discussions about organ donation and to support families through the decision making process is very important. The reasons why families may choose to refuse organ donation are varied and complex.
 
Selected staff from NSW hospitals have already undertaken training provided by the Australian Organ and Tissue Donation and Transplantation Authority in collaboration with Gift of Life Institute of Philadelphia, a world leader in donation request training. As part of the specialist training, staff will learn how to sensitively discuss organ donation with families to assist them in making an informed decision.

 

» How can we assist clinicians to honour the wishes of consenting donors when the donor’s family may not be supportive?  


A guideline is being developed under the Human Tissue Act requiring clinicians to document the reasons for acceding to family refusal in situations, where a potential donor has previously indicated consent. This will ensure the donor’s decision is followed as much as possible, unless the clinician has a valid reason to uphold the position of the family in overriding consent.

In the future, this information will be used to better understand the reasons for family refusal and increase our knowledge about what makes organ donation difficult for some people to contemplate. It will also assist the design of programs to support clinicians in discussions with families about organ donation.
 
Documenting the reason for refusal may also highlight whether there are systemic barriers to donation within hospitals that we can overcome, such as family concerns  the organ donation procedure will take too long and the donor’s body may not be available for timely burial.

 

RESPECTING THE MOST RECENT ORGAN DONATION DECISIONS OF PEOPLE

»What if someone has changed their mind about being a donor but hasn’t updated the Register?


Designated Officers in NSW hospitals who are appointed under the Human Tissue Act to authorise organ and tissue donation will now be able to consider all of the most recent decisions of the deceased person regarding organ donation.
 
The Human Tissue Act has been changed to enable Designated Officers to also consider the most recent views of the deceased person who registered an objection, but who had changed their mind:  for example, where the family advises the treating doctor or Designated Officer of a recent conversation during which the person said they had thought about organ donation, and they wanted to be a donor.

 

IMPROVING IDENTIFICATION OF DONORS

»What will be done to increase the identification of potential donors in hospitals?


Staff from the NSW Organ and Tissue Service (NSWOTDS) collect data on all hospital deaths in NSW to review missed opportunities for donation and provide extra education to hospital staff where donation opportunities have been missed.
 
A set of clinical triggers designed to prompt hospital staff to consider donation has been implemented in Emergency Departments and Intensive Care Units throughout the state. These clinical triggers are monitored regularly.

 

» What happens if I become a potential donor?


A specialised team of healthcare professionals will ensure all criteria are met to enable donation. Death will be diagnosed through a series of specialised tests. The staff will check the Australian Organ Donor Register to see if you have previously expressed your donation decision.
 
A trained specialist will discuss donation with your loved ones.
 
Consent for organ donation will be sought from your family and the coroner if required. 
 
A medical and social history will be obtained from relatives.
 
After all the information has been obtained it will be checked by a Designated Officer, appointed under the Human Tissue Act, before they authorise donation.  

 

»I’ve heard there are different pathways to donation. What are they?


Death must be determined before donation can take place. There are two ways in which death can be determined. The mode of death can influence the way donation occurs.
 
There are two pathways to deceased donation:

  •  Brain death, which occurs when a person’s brain permanently stops functioning
  •  Cardiac death, which occurs when a person’s heart permanently stops functioning

In addition, living donation is possible for kidneys and the liver (by surgically removing a portion of the liver). Living donation can occur in cases where relatives and/or medically suitable donors agree to donate and their tissue type is a good match with the recipient.

 

LIVING DONATION

» How many NSW people have benefited from the Australian Kidney Exchange program?


The Australian Kidney Exchange Program enrolls potential kidney transplant recipients who have willing, but incompatible, living donors (the recipient and the donor together are referred to as “pairs” within the Program).  
 
NSW has had 39 donor and recipient “pairs” enrolled in the Australian Kidney Exchange since it began in 2010.
 
To date 12 NSW recipients have received transplants through this program and 12 kidneys have been donated to other Australians enrolled in the program.  

 

» What financial support is available for living donors?


The Isolated Patients Travel Accommodation Assistance Scheme (IPTAAS) provides travel and accommodation assistance for patients, including living donors, admitted to hospital.
 
Many work place industrial awards include provision for a range of types of paid leave.
 
Expenses for medical assessment, surgery and public hospital care are covered by public health funding, Medicare and in some cases by private health insurance.
 
Living donors may also meet the criteria for Australian government benefit payments.

 

IMPROVING CONSENT RATES

» What is a designated requestor and how will it improve donation rates?


NSW is preparing to introduce a model where ‘designated requestors’, who are health professional specialists in donation and separate from the treating team, will be responsible for family consent conversations.

This new model is based on international practice where ‘designated’ specialists conduct these important conversations and ensure specialist support for families.  The approach has been shown to result in higher consent rates in places where it has been adopted overseas.

 

THE MODEL FOR CONSENT: “OPT-IN” OR “OPT-OUT”

» Why are we retaining the “opt-in” system for consent to organ donation in NSW?


Australia has an “opt-in” system for organ donation. This means a person will only become an organ donor if they consented during their life time, or if their family consents where the person had not indicated their decision prior to death. 
 
An “opt-out” system means that everyone is presumed to want to be a donor unless they explicitly register a refusal.
 
When the NSW community was consulted about the consent model for NSW in late 2011, there was overall support for retention of the current “opt-in” model.
 
There is no clear international evidence that the “opt-out” model leads to increased donations. Family refusals may still occur in an “opt-out” system.
 
The “opt-out” consent model may well be viewed by the community as unacceptably coercive and paternalistic given the emphasis on informed consent in the health system more broadly.
 
An “opt out” system may also have a differential impact across the community with an unfair burden placed on those who may not as readily exercise their right to opt out e.g. those with lower literacy levels or with limited English language skills.

 

INCREASING AVAILABILITY OF TISSUE FOR TRANSPLANTATION

» What is being done to increase the availability of tissue such as corneas, heart valves and bone for transplantation?  


All of the strategies to increase organ donation – such as encouraging registration of donation decision and family discussion; promoting the benefits of donation and transplantation; and increasing the skills of clinicians to support families and obtain consent – will also increase tissue donation.
 
In addition the Human Tissue Act has been amended to allow appropriately skilled health practitioners and technicians such as nursing, scientific or pathology (mortuary) technicians to retrieve cardiac tissue, such as heart valves. This will allow for an increase in the availability of cardiac tissue.
 This will make the process consistent with the arrangements for corneal and musculoskeletal tissue retrieval.   


WHERE DO I GO FOR MORE INFORMATION?

For more information visit www.donatelife.gov.au/decide