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Curing organ donation’s ‘ick’ factor

Inaccurate, insensitive depictions of organ donation can have a real impact on a family’s decision. 

Over the last few weeks, a number of incidents in the public sphere have highlighted the problem of callous, inaccurate and insensitive representation of organ donation.

The BBC faced strong complaints and approbation from the UK’s National Health Service for its depiction of organ donation in a recent television drama. And in Australia recently, a television program that presented a case of a death and subsequent organ donation created outrage amongst nurses and those who are awaiting a transplant.

The program was a poor portrayal of organ donation and nurses. The outcomes it presented could negatively colour the opinions of those who watched.

The program coincided with a discussion about the release of a liver transplant surgeon’s new book, designed for public consumption. A family member of an organ donor picked it up and it was passed to Donor Families Australia for review. The DFA members were deeply distressed by insensitivity in the portrayal of the surgical process and the apparent relegation of the donor to a vessel for organs.

The real anxiety about organ donation held by many is sometimes referred to as the “ick” factor. It includes the idea of bodily mutilation, disrespect for the grieving family and confusion about the terminology and determination of death. The organ donation sector describes these fears and uncertainties as myths. They are known to intrude upon and sometimes strongly influence the decision-making process of people contemplating their own or their relative’s death and organ or tissue donation.

Despite an increase in the number of donors in Australia since the introduction of funding to facilitate the clinical requirements, 2013 figures indicate about 45 per cent of families still decline the request for donation, a figure that remains unchanged across the last decade. For this reason, Australia still lags well behind most developed countries in organ donation, with a rate half that of Spain, which has the highest and seeks family consent for every donation despite its opt-out scheme. It is possible that despite the altruistic character of Australians and a willingness to support the idea of organ donation, many here carry a subconscious hesitation to agree to the process, underpinned by distrust.

I am saddened that despite the general acknowledgement in the public conversation in Australia that we should increase our organ donation rates, including calls for opt-out legislative frameworks to over-ride the influence of families in the decision-making process, many thought leaders remain amazingly insensitive to the impact they have on the organ donation decisions of the community. They can influence not only people who may have to make a decision in the future about organ donation, but also grieving family members who, having made a decision to donate, would benefit from affirmation after what is often a harrowing experience.

Receiving empathy and compassion contributes to the trust and hope that is essential for families making a decision to donate, and for people to start expecting to donate as a normal part of end-of-life care. Families need to be able to trust that their relative will be cared for and honoured and that their grief will be acknowledged. They need to have hope that their decision respects their loved one’s wishes, and is validated with care for their loved one throughout the donation process. They require validation for their decision and acknowledgement of their gift.

We cannot blame families for declining to donate their loved one’s organs when their first need is to protect and care for them and their bodies.

The only place families can obtain information about organ donation in Australia is from the media and information in the public domain, and this is what they use to inform many of their decisions. This leaves the hospital staff with the difficult task of not only providing excellent care and communication in every facet of the patient journey, but also fully educating a grieving family about organ donation. For most people, it is new and complex information, and is difficult to assimilate through the veil of emotion, shock and sleep deprivation.

There are no authoritative standardised public education resources available in Australia about what it’s like to go through donating your relatives’ organs and what families should expect when faced with the decision. Until there are, everyone must consider the power and impact of their words. An interesting comment from a study participant (who declined donation) was “so much for the recipient but nothing for the donor”.

Consider a more thoughtful approach to how organ and tissue donation are presented in public and professional communication. It has ramifications. For example, there were only four heart/ lung donors in Australia in 2012. The numbers of patients who die on the waiting list or are removed from it when dying are not published. Anecdotally, they are significant. It must be heartbreaking to be waiting for a transplant while aware of the impact insensitivity could possibly have on another family’s decision whether to donate. Please consider how your family would feel if asked to donate a loved one’s organs, because in truth it can happen to any of us at any time.

Holly Northam is an assistant professor of critical care nursing in the disciplines of nursing and midwifery, faculty of health at the University of Canberra.

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