Following in the steps of my colleague Hugh (see previous post), I too crossed the Channel this week to take part in a Europe-wide discussion of organ donation and transplantation: this time through a workshop for journalists hosted by the European Commission. The aim of the workshop, attended by journalists from nearly twenty different countries, was twofold – first to provide background information from a range of perspectives, including an ethical one, and then to discuss the role and impact of the media on donation.
The cross-European nature of the audience demonstrated the different challenges currently facing European countries in their provision of services to people with end-stage organ failure – while Rafael Matesanz spoke powerfully about the ‘Spanish model’ of efficient organisation, fronted by specialist co-ordinators responsible for identifying all potential organ donors in hospitals and approaching their families, a journalist from Greece depicted the bleak picture of the electricity supply for dialysis machines being cut off because the hospital’s fuel bills had not been paid.
I had a ten minute slot to summarise ‘the ethical considerations arising in organ donation and transplantation’. My main focus in that time was to look at the implications of the fact that organs, by definition, come from people – how far can we go, ethically, in encouraging people to donate their organs, and what, if any, claim can others make on our bodies? Such a perspective is important in balancing the natural tendency to focus only on the need to ‘maximise organ supply’ because of the obvious benefits to those needing transplants . Yet behind every transplantation operation lies the huge generosity of a living donor, or the tragedy of an unexpected death, with which families are having to grapple at the point when they are being asked to agree to help others.
In this respect, my task was not a difficult one: we had heard earlier in the day from three compelling speakers describing their personal experiences of donation and transplantation. Sophia had insisted on being a living kidney donor for her brother, despite his feelings of guilt and responsibility: she described the psychological screening (“How would you feel if your daughter ever needed your kidney?”) as being one of the hardest parts of the process. The donation itself she categorised as “an act of love”. Lia’s young daughter had suffered catastrophic brain injury falling down stairs – after agreeing that her daughter’s organs could be donated, Lia set up a support group for other donor families. Raffaella’s lung capacity was reduced to the point that brushing her own teeth was too exhausting – while waiting for a double-lung transplant she lay at home on oxygen fantasising about reading a story to her children without having to stop after every line. Feelings of love, gratitude, generosity and loss, emerged in every line, vividly illustrating why our report concluded that an altruistic basis to donation “underpins a communal and collective approach where generosity and compassion are valued”.
And how about the role of the media in donation? We were told that most direct advertising to encourage donation was ineffective (health departments can’t compete with big companies’ advertising budgets) – what made the difference were positive stories about donation in the press more generally. Donation rates dip dramatically in response to adverse press reports such as allegations of unfair allocations of organs – journalists from Germany emphasised the detrimental effect currently being experienced in their country as a result of an abuse of the system. The importance of good communication between the press and the transplant community was emphasised – but as one journalist pointed out, if scandals happen you can’t expect the press not to report them, whatever the knock-on effect on donation rates. So we’re back to the question of trust again – and the need for systems to demonstrate their trustworthiness so that the public can rightly place confidence in them.