Making choices about the end of life

End of life and palliative care

ACP Advance Care Planning

It’s important your loved ones and the people caring for you know what you want at the end of your life. You can say what you would prefer about things including where you want to die, how much you want your family involved and what you might take for pain relief. Sharing your decisions with your loved ones and the people caring for you means that if there is a time you can’t communicate, they can give you the care you want.

If you have a life-limiting illness, it is a good idea to have an advance care plan, an Enduring Power of Attorney appointed and a Health Direction that states your choices about your care.

ACT Advance Care Planning team can help you to complete these documents at a Community Health Centre or public hospital near you. You can phone (02) 5124 9274 or email acp@act.gov.au to speak to someone or make an appointment.

You can find out more information about Advance Care Planning by having a look at this infographic.

Organ and Tissue Donation

DonateLife ACT coordinates all organ and tissue donation activity across the territory. They work with hospitals and hospital-based DonateLife medical and nursing specialists to ensure everyone who is eligible, is offered the opportunity to become a donor at end of life if that was their wish. DonateLife ACT provide professional donation services and encourage best practice to increase donation rates, in turn saving the lives of Australians on the transplant waiting list.

DonateLife ACT activities include:

  • raising awareness about organ and tissue donation
  • encouraging discussion about donation
  • educating health professionals about the donation process
  • offering care and support to donor families.

The team at DonateLife ACT are available to talk to patients and their families about organ or tissue donation at any time. Donation Specialist Nursing Coordinators (DSNCs) will explain whether there is a potential for organ or tissue transplantation, research or both.

Organ and tissue donation is only considered when the person has died or death is inevitable, at which time the Australian Organ Donor Register (AODR) is checked and the family is asked to confirm their loved one’s donation decision.

Organ donation and subsequent transplantation is a life-saving and life-transforming medical process. Organ and tissue donation involves removing organs and tissues from someone who has died (a donor) and transplanting them into someone who, in many cases, is very ill or dying (a recipient).

Organ donation is very rare. Only about 2% of people die in specific circumstances in a hospital that enable organ donation to occur. However, many more people can be eye tissue donors, as donation is possible in more situations including up to 24 hours after death.

When donation is a possibility, it helps when families know what their loved one’s wishes were. In 2020, 89% of families agreed to donation when their family member was registered to donate on the AODR. While the majority of Australians support organ and tissue donation, only one in three (34%) are registered to be a donor on the AODR. Registering to become a donor and talking to your family about your decision has a direct influence on consent rates. Consent for donation was given in 66% of cases when the family had prior knowledge of the wishes of their loved one. This dropped to only 44% of families agreeing to donation when the family was unaware of their wishes.

Where a person is not signed on to the AODR, a DSNC will speak with family members and assist them to come to an agreement that best suits the family.

This image helps to demonstrate how many lives were transformed through organ donation in 2019 and 2020. 

Organ transplants from deceased donors

Organ and tissue retrieval is performed by highly skilled surgical and health professional teams. 
After the donation process has been completed, DonateLife ACT will keep in touch with the donor’s family and provide them with deidentified information about transplant recipients if they wish to know about that.  Donor family members will be supported by DonateLife ACT’s dedicated Donor Family Support Coordinator. A donor’s death certificate can be amended to reflect their generous gift via Access Canberra.

You can sign onto the Australian Organ Donation Register at donatelife.gov.au.

Further Information:

For more information and resources on organ and tissue donation visit the organ and tissue donation page

Voluntary Assisted Dying

Key points:

  • Voluntary assisted dying is not legal in the ACT

Further information Voluntary Assisted Dying in Australia and Guiding principles for those providing care to people living with a life-limiting illness can be found in this factsheet.

Page last updated on: 18 Nov 2021