Facebook has introduced a new tool allowing users in Australia to display their organ donation status to their friends, following the introduction of the initiative in the United States and the United Kingdom last week. For those not already registered, the tool provides a link to the appropriate donor registry.

This simple idea has potential to transform organ and tissue donation by providing reassurance to families that their loved one really did want to donate their organs, when they are facing the horror of an untimely death.

Understanding the need

The extraordinary implications of Facebook’s move can be seen when we try to understand the international need for transplants. The World Health Organisation’s (WHO) Global Observatory on Donation and Transplantation data suggests that less than 10% of the world’s transplantation need is met.

The United States has over 100,000 people waiting for an organ transplant, the United Kingdom more than 10,000. The extent of the need for transplantation is difficult to define in Australia but a minimum of 1604 people were listed as waiting for a transplant as of May 2, 2012.

Children are more likely to die waiting for a heart transplant than any other demographic in the United States. These data are not publicly available in Australia, but based on international experience and Australia’s low organ donation rate, it’s possible to assume a similar outcome for children here.

In 2011, 337 deaths led to organ donation in Australia. Effective strategies to increase deceased organ donation rates will clearly provide great health, social and economic benefits to many.

The final decision to donate organs

Organ donation can only result from around 1% to 2% of all deaths. Families have the final responsibility to donate their loved ones' organs in the aftermath of an often sudden, and sometimes traumatic, event that has left their relative requiring critical care.

Usually, it becomes clear within a few days if nothing more can be done to help someone requiring complex medical care. Sometimes, death may occur while on the ventilator. But it’s when the decision to stop treatment is made that families may be asked to donate their loved ones' organs.

This is the heartbreaking scenario being faced by families around the world when they are asked to donate organs. Relatives and close friends have the challenge of understanding the finality of an unexpected death, of trusting the diagnosis of death and accepting the quality of health care provided.

Less than 60% of Australian families agree to donation despite public polling showing at least 79% of Australians support the idea. In response, Donatelife Australia’s communication strategy is to urge families to “know your loved ones wishes”.

Expected difference

Very few families provided with the information and support they require to make a considered decision about organ donation will over-ride their relatives’ known wishes. Having access to the words and thoughts of a loved one on Facebook provides confidence that the information and details reflect an authentic decision.

This knowledge has the potential to provide clear guidance for families seeking reassurance that “this is what they really wanted.”

Almost six million people have registered their intention or consent to donating their organs and tissue on the Australian Organ Donor Register. The details of their wishes are held within a secure database. But this information is not available to family members unless it’s provided by a doctor or nurse involved in the end-of-life discussion about organ donation for their relative. The same information can also be carried on a card but this is often unavailable when most needed.

Failing initiatives

Despite the introduction of initiatives to increase organ donation rates in Australia, the standardisation of a process to access the organ donation register at the end of life hasn’t been achieved in clinical practice. And the legal standing of a deceased person’s formal consent to donation documentation is not supported in practice either.

Some doctors hold the view that accessing the Register to identify the deceased’s organ donation wishes may be seen as coercive, and unduly influence the family’s ability to make a decision. The Facebook initiative relieves ethically conflicted medical staff of this responsibility, as the friends and families of those faced with imminent death will be able to access the personal information they desire, in a time frame that is consistent with when organs need to be donated.

Many families wish to honour the wishes of their relatives, but are unable to confirm their views. This is why the Facebook initiative has so much potential.

Respecting everyone’s wishes

It’s not possible for young people under the age of 16 to register their organ donation intentions on the Australian Organ Donor Register. This leaves the parents of deceased children and young people with the onerous responsibility of making an organ donation decision without being able to confirm their child’s wishes.

Given relatives of adults often find this an overwhelming responsibility, it’s an unreasonable expectation that a grieving family of a child or young person will trust the memory of an “off-the-cuff” conversation to help them advocate for their child’s wishes.

The Facebook initiative provides the option for people of all ages to explore the idea of organ and tissue donation with their friends and family. It allows them to make statements about their thoughts and views, and to have them challenged.

Social media is transforming the way we communicate our health-care needs. Facebook claims that half the US population now holds an account. This is an initiative that should provide great hope for those who know their future is dependent on an organ or tissue transplant.