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Organ donation - conflicting power and interest

18th October 2016

Former RegNet visitor, Holly Northam has written the following article on organ donation for the Donor Families Australia News. Holly spent 6 months at RegNet in 2014 under Professor Valerie Braithwaite whilst working on her PhD study ‘Hope for a peaceful death and organ donation’. Holly was awarded a PhD earlier this year from the University of Canberra and continues to work with Professors Valerie and John Braithwaite and other RegNet scholars in research relating to hope, restorative practice and health care.

By Holly Northam (UC) & Valerie Braithwaite

Organ donation is a challenge. Numerous competing players and interests jostle over this highly valued and elusive life and death health resource. Key player’s identities are hidden within organisations by regulation and mystique. Major barriers to donation (Hyde, Wihardjo & White, 2012) are known to include fear of death and body mutilation, religious beliefs around bodily integrity and lack of trust in doctors, hospitals and health systems. All negative perceptions are challenging to change. The fourth barrier is more often an important enabler, and rests beyond the individual –with their family. This hurdle is much easier to overcome; it is one that empirical research has underlined time and time again as a potent support for donation to proceed. If the family knows an individual’s desire to donate (OTA, 2016) their organs, they will generally agree to support that intention despite their own reservations (Badcock, 2015). When families talk about organ donation, they work through the issues together, become more knowledgeable about the possibilities, and organ donation is a more likely outcome, not only for the donor but also for those in his/her network.
Against this backdrop of empirical evidence, we see a push by a privileged and powerful lobby group to increase the availability of organ transplants through policy that incapacitates and disempowers individuals and families (Savulescu, Singer & Isdale, 2015). This is exactly the opposite effect to what the evidence says is the most powerful leverage point in changing attitudes. The goal of increasing the number of organ donations is worthy, but the measures that are currently being advocated for achieving the goal are at their heart coercive and authoritarian. Some argue for an opt out law – one’s organs become available on death unless one specifies that this is against one’s wishes. Others argue that if individuals have signed up to be an organ donor, they should not have their wishes over-ruled by family at the time of death. Law is seen to be the answer to problems that are essentially relational, psychological and medical. Law is used to rob individuals of knowledge, understanding, and closure that the process and outcome has social legitimacy – in their heart they feel that everyone did their best and did the right thing. To be fair to those advocating for law-based organ donation, the organs available will increase briefly. The goal will be achieved. In the same way we, as a society, achieved the goal of curbing refugee boat arrivals through turning back boats and off-shore detention centres. Australians have become somewhat cavalier about using law to achieve the goal at whatever human cost. In both cases, debate around policy has been narrow and there have been deliberate manoeuvres to avoid considering a bigger picture. Social goals, no matter how worthy, should not be achieved through domination of people. Ultimately they will fail. For example Singapore (Chin & Kwok, 2014) and a number of other countries that embarked on opt out legislation have found most of their population now refuse to donate. What is missing from current analyses of organ donation is respect for people, their relationships, and the government’s obligation to win support for its policies and their implementation. It is not ok for a government to take the short cut of coercion in a democratic society, no matter how worthy the individual cause. The evidence on organ donation clearly signals to government what it must do to increase the organ donation rates without resorting to domination through law. People need to see and understand what happens, and know a professional team is there they can trust. Families need to support each other and help to ‘stay the course’. In situ families need support – someone they can trust to worry about organ donation while they worry about the dying person. People need to know that their loved one’s best interests, body and memory are respected and protected by all involved. They need to know their family will receive the support they need to get through the declaration of death, their parting with the body and the donation process. Finally, they need to have their trust and hope validated by receiving acknowledgement for their courage, and sometimes sacrifice for giving over their loved ones deceased body - which in most cases, is warm with a strongly beating heart at the time of donation, to benefit the lives of others. These are not trite events. But rather are deeply reverent moments of humanity - that demand a respect for the sacred and not a primitive hammering of legislation. Ultimately the legal path without the social infrastructure to back it up will cause more harm than good, trampling the human spirit like an elephant in a china shop.

References

This article originally appeared in the Donor Families Australia News, Winter 2016(13).

Updated:  10 August 2017/Responsible Officer:  Director, RegNet/Page Contact:  Director, RegNet