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.
But the first is not so easy. 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% of families overrule their loved ones’ wishes and decline to donate their organs.
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 in 2009, donor numbers have gradually increased so that by the end of 2013, the projected number of donors will be double that long-term average.
But there is more to do. Now it is time to consider the next big thing — 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 should have 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 co-ordinators 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 bypass 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.