A deserted beach in winter with footsteps on the sand. This would be a fitting setting to consider organ donation.

Grief associated with organ donation

Organ donation involves taking organs from a person who is dead and putting those organs in another person to help them live. Organ transplantation saves lives and improves the quality of life for many people. But this doesn’t mean that it is an easy decision to make. For many people, decisions around organ donation are associated with significant grief.

The sudden death of a previously healthy family member is a traumatic experience that will affect people in many different ways. Most people understand that death occurs when the heart stops beating and blood no longer goes to the brain. However, it is important to realize that most organs can only be donated from people who are “brain dead” – people whose brains have lost all function, and whose heart only continues to beat with the help of life support.

When it is clear that a person’s brain cannot recover, the option of donating their organs may be presented to family members. This may be the first time they have heard about “brain death”.

Understanding ‘Brain Death’

Brain death is when an injury causes the brain to swell and the pressure within the skull stops blood (and vital oxygen) flowing to the brain. The swelling also causes the brain to push on the brain stem. The brain stem controls our breathing, blood pressure, heart rate, and body temperature. All of these are vital to maintain life.

When a relative is on a ventilator (a machine that pumps air into the lungs) in a hospital Intensive Care Unit, and the doctors say that person is dead, it can be difficult to understand.  It can be hard to believe that a person has died when they still have a beating heart, are warm to the touch, and their chest is moving up and down. However, a person who is brain dead looks just like this. The heart can continue to beat for a considerable period as long as oxygen is being supplied to it artificially, but will eventually stop when it has no signals from the brain.

Even though the doctors may say a relative is dead, it may take some time to comprehend. Diagrams, looking at X-rays (if they were taken), and asking questions can help people to understand that brain death means the person can never recover.

The request for organ donation needs to occur after a relative is certified dead at the time of the last brain death test. The request for organ donation may come as a shock for many relatives. Other families are prepared, knowing their loved one has made their wishes known and registered as an organ donor, for example when renewing their driver’s license.

Why Consent To Organ Donation?

Many families have never discussed or even thought about organ donation until a tragedy happens. Families will be asked about the wishes of their dead relative. In some instances there may be a designated substitute decision maker under an Advance Care Directive who must be consulted. If the person’s wishes are not known, their family or substitute decision maker will need to make the decision.

Donor families have given the following reasons for consenting to organ donation:

  • it was an opportunity for something positive to come out of a tragedy
  • it would enable someone else to live a better life
  • the person would have wanted to help others

Things That Can Complicate Grief

There are situations that may complicate the grieving of family members and their decisions around organ donation. These include:

  • sudden or traumatic death
  • the death of a child
  • a perception that the death could have been prevented
  • lack of support
  • lack of opportunity to spend time with their relative

Supporting Donor Families

Donor families will need special attention and support through this period. Support for donor families will help in their grief recovery. This support starts at their arrival at the hospital and includes:

  • accurate information regarding the patient’s treatment and likely outcome
  • empathy and understanding from all staff
  • information about organ donation
  • the chance to ask questions
  • private times with their relative and a time to say “goodbye”
  • consideration of spiritual needs

In Australia it is policy for families to receive information regarding who has been helped by the generous gift of organ donation.

Donation agencies can offer support, and talking to other donor families can be helpful.

Families are urged to contact their local organ donation agency for assistance in finding answers to any questions they have. Most agencies can make referrals to suitable bereavement counsellors if required.

Organ donation does not take away the pain of death. However, many donor families have said that the transplant was the one positive thing to come from the death of their loved one.

Other Resources

Organ and Tissue Authority Australian Government – Donate Life

Information for donors and their families.


Page last updated: 29 Dec, 2021