Why families say “no” and health professionals don’t ask – the scarcity of deceased organ donors in South Africa
Posted on May 17, 2018
A significant component of my PhD research (completed some time ago now – in 2015) involved trying to better understand why we have such low numbers of deceased organ donors in South Africa. I have discussed this briefly in other blog posts, but my final article from my PhD has just been published, and it addresses some of these issues in a bit more detail.
Right from the beginning of my involvement in transplant , I used to hear people say “our citizens are unwilling to donate the organs of their loved ones because it’s a cultural issue”. I never fully understood what was meant by that – it seemed a catchall phrase to describe religious beliefs, personal perceptions and group attitudes to organ donation. These claims weren’t backed up by much research, and I decided to explore some of them in my work. I hoped to establish whether they really held water. You can see more detail of exactly what I did, and how I did it, here.
My conclusion, all said and done, was that attributing unwillingness to donate organs to peoples ‘culture’ fails to recognise and acknowledge the extraordinary complexity of transplant itself, of our health system in South Africa and of our diverse multiplicity of patients. Of course, personal socio-cultural beliefs do, and always will, play a role. But I found that there were a lot of other factors that came into the equation. There was a perception that both some patients (and indeed the hospital staff caring for them) may believe that organ donation is ‘killing’ the patient. There was a sense that some doctors are unwilling to refer potential organ donors because this was akin to an admission of failure (the patient had died, the doctor had failed to do their job – which was curing the patient). There were serious concerns about exactly what happens in the operating theatre when organs are extracted from a deceased donor. There was also a real sense of suspicion and mistrust – which had been fuelled by the Kidneygate scandal of nearly 20 years ago and seems to abide in the public memory.
Many of these reasons are without scientific or medical foundation. Organs are only ever removed from people who have been declared ‘brain stem dead’. In theatre, great care and attention is taken to dignify and respect the body of the donor, which is not disfigured. Often, the whole team will do a ‘donor pause’ – a moment of silence where they take the opportunity to give thanks for the gift of life – before going into theatre.
We need to try and better appreciate that depending on who you are, where you have been and where you are going, the world looks different to different people. I think if we could spend a bit more time trying to understand our patients, especially those incredibly brave families who donate the organs of a loved one during a time of immense grief, we may be able to improve our door numbers.
The views published in this blog are entirely my own (informed) opinions. They are open to debate, discussion and disagreement.