‘Like’ after death

Social media is transforming the way we communicate our wishes, such as organ donation, writes Holly Northam

Facebook has introduced a tool allowing users in Australia to display their organ donation status to their friends, following the introduction of the initiative in the US and UK. 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.

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 per cent of the world’s transplantation need is met.

The US has more than 100,000 people waiting for an organ transplant, the UK 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 this year.

Children are more likely to die waiting for a heart transplant than any other demographic in the US.

This data is 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. Organ donation can only result from about 1 to 2 per cent 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 when they are asked to donate.

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

Very few families provided with the information and support they require to make a considered decision about organ donation will over-ride their relative’s 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 6 million people have registered their intention or consent to donating their organs on the Australian Organ Donor Register. The details are held within a secure database. But this information is not available to family members unless it is 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.

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 say 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.

Holly Northam is assistant professor of critical care nursing at the University of Canberra. This article first appeared in The Conversation online.

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