The next big thing we need in organ donation? “Honouring decisions”

Australia’s organ donation rates are not high, but they have nearly doubled since the introduction of the Australian Organ and Tissue Authority (AOTA) in 2009.

However, many people who want to donate have their wishes overturned by family. Given that and the urgent need for organs, Anne Cahill Lambert argues that it’s time to consider introducing ‘First Person Consent’ which grants primacy to the donor’s decision.

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Anne Cahill Lambert writes:

I often speak at community events, promoting organ donor awareness. Invariably, the first question goes something like: “Why do my family have the right to veto my decision to donate my organs?”

As an aside, the second question is usually about whether the clinicians are sure that the potential donor is dead. On that matter, two senior doctors are required to perform a range of tests to assess whether there is brain function or blood flow to the brain. That question is easy to answer.

But the first is not so easy. And does it matter? For those who are desperately ill and whose lives can be transformed by a transplant, it matters enormously. It also matters because, when I speak at those community events, I find that people are incensed that their decisions will not be respected, upheld and fulfilled. And many won’t: according to 2013 figures, around 45 per cent of families still decline the request for donation.

Between 1989 and 2009, Australia’s efforts at improving organ donation were stagnant with about 200 donors each year. Following the introduction of the Australian Organ and Tissue Authority (AOTA) in 2009, donor numbers have gradually increased so that by the end of 2013, the projected number of donors will be double that long time average.

But there is more to do. When the Authority was established, nine areas of reform were developed. The box can be ticked on most of these nine areas so it may well be time to refresh the agenda, especially now that a new Federal Government is in place. The Authority has implemented the things that were essential to get the number of donors trending upwards.

Now it is time to consider the next big thing, viz., First Person Consent, sometimes called First Person Authorisation or Donor Designation. First person consent is about returning the upper hand in the decision making process to the potential registered donor. The donor’s decision has primacy in the organ donor process.

First Person Consent, first enacted in the United States in 2002, works on the underlying assumption that families would accept donation decisions of their loved ones if they knew about that decision. The principle is that hospitals are given the legal authority to retrieve organs from a deceased person if that person has registered to be a donor on an official registry. Legally, hospitals do not need to seek approval from families, but in reality they do seek endorsement.

Importantly, however, families of such donors are not legally asked for their consent but are taken through a different process based on supporting the original ‘first consenter’ decision. Organ donor coordinators monitor for any potential adverse reactions, manage the families through the process and, in the event of any residual adverse response, lead the family to the logical and acceptable outcome.

This does not by-pass families. They are given the opportunity to endorse and honour their loved one’s decision. If they oppose the loved one’s decision or can advise that commitment to organ donation changed, of course retrieval of organs will not proceed.

Australia’s reform agenda was based on the Spanish model, complemented by best practice in other settings. Spain does not rely on an organ donor register but it does rely on the use of extended or expanded criteria organs – those organs that are from donors who fall outside the retrieval and allocation protocols. Australia has not yet accepted that practice but it should be be a serious discussion next time our protocols are reviewed.

The United States is in the top ten performing countries as far as organ donation is concerned. A key component of its success relates to first person consent. The concept is that families will accept the organ donation decisions of their loved ones if they know about that decision. The decision to donate is recorded in a register.

Professor Laura Siminoff is an internationally recognised expert on first person consent. Her latest paper on this topic concludes that first person consent increases the likelihood of family endorsing the decedent’s wishes. It also makes the whole process easier for the family and they are more satisfied with the final decision and outcome. So, the ‘ick-factor’ may well become a thing of the past.

A number of community leaders in the organ donation sector are asking for the community to be genuinely involved so that decisions of the deceased organ donor are respected and fulfilled. This would include promoting the use of the Australian Organ Donor Register (AODR). Attendees at community meetings that I address are always incredibly proud of their donor card.

I can hear opponents of this suggestion, specifically ShareLife, arguing that because Spain does not have a register and is identified as the world’s leader, Australia should not move down this path. However, culturally (and clinically, as noted previously), Australia and Spain are very different. It is extremely difficult to get Australians to make firm arrangements with their loved ones about their death. Now that Australia has a nationally coordinated approach to organ and tissue donation, we should be using everything at our fingertips to enhance the donation process and improve donor numbers.

The various campaigns that have been run by the AOTA have focused on knowing loved ones’ wishes in relation to organ donation. First person consent is about honouring loved ones’ decisions through the use of the AODR.

There is little or no cost involved in implementing first person consent in Australia. Human tissue legislation in each jurisdiction does not preclude the approach. Rather, it would be an administrative process in the hospitals to implement first person consent. The families of registered potential donors would be taken through a different process than the families of unregistered potential donors.

First person consent is not an ‘opt out’ system; that is, a system that presumes consent if a person has not registered.

The AODR allows for Australians to record a decision for or against organ and tissue donation. Additionally, clinicians would monitor families. They will not retrieve organs or tissue if families are totally opposed to such a process. But, based on the research of Siminoff and others, it is expected that families would be more likely to endorse the decision of the decedent.

The small cost would be in the promotion of organ donation – moving from a wish to a decision and promoting the AODR. Of course, we could also develop some apps to bring access to the register up to current technology.

To me, it’s a no brainer. Australia should move onto the next big thing.

Anne Cahill Lambert, AM, was previously a member of the Council of the Australian Organ & Tissue Authority. She has a Bachelor’s degree in health management and a Masters in public administration.