Promoting organ donation – guilt or gratitude?

Five years ago, the Organ Donation Taskforce published an ambitious action plan, Organs for Transplant, setting out proposals to increase the annual ­number of deceased donors in the UK by 50%. Remarkably, this target was achieved in April this year. The heart of the Taskforce’s approach was the need to improve every aspect of the systems surrounding donation and transplantation, so that all potential donors are identified, their families sensitively approached, and the right professionals and facilities in place to facilitate donation and subsequent transplant. As a result, 30.5% more transplants per year are now taking place, potentially transforming the lives of those who received them.­

Earlier this month, the NHS body responsible for overseeing organ donation and transplantation in the UK, NHS Blood and Transplant (NHSBT), built on the earlier taskforce report with a new UK-wide strategy Taking Organ Transplantation to 2020. The new strategy takes a bullish tone – while noting the significant organisational progress made since the Taskforce report, it highlights how consent rates by relatives have remained stagnant over the same time period, and argues for a ‘revolution’ in public attitudes to consent. To quote direct from a headline in the strategy: “It must be clearly understood: the UK will never have a world-class donation and transplantation service if more than 4 out of every 10 families say no to donation.” Expanding on this point, the strategy emphasises how 43% of families “refuse to allow donation to go ahead, sometimes even overturning the recorded wishes of their loved one” and points out that “when a family refuses to support a relative’s wish to donate or is unwilling to make the decision on his or her behalf, someone else will die.”

The improvements relating to efficient systems and professional training advocated by the Organ Donation Taskforce seem utterly non-controversial – and NHSBT is right to point out, as it does in this new strategy, that more can still be done in this sphere. If every area of the country could level up to the best, for example, it is estimated that there would be over 500 more donors per year than at present, representing a further 45% increase. But I confess I find the tone of the strategy with respect to families troubling. Not only does it seem to play to people’s potential sense of guilt (with no acknowledgment of the complex reasons why families may find it difficult to say yes to donation at a highly traumatic time) – but it also misses out an absolutely crucial nuance in the crude statistics.

In the Council’s own report on donation in 2011, we cite figures from NHSBT showing that where a person has signed up the Organ Donor Register, fewer than one per cent of their families refuse to donate at least a kidney (up to 10% may, however, refuse to donate other organs, such as heart or lungs, even if the deceased person had indicated their willingness to do so). The contrast with the 43% of families overall who refuse is stark. The issue we therefore need to address is surely not those families who feel unable to honour the decisions of their deceased relatives (a tiny minority) – but rather the challenges faced by families who just don’t know what their deceased relative would have wanted. In other words – rather than encouraging culture change through a rhetoric of guilt, we should be finding any way possible to encourage those who are in favour of donating their organs (consistently shown in surveys to be very high) to register this wish – and to tell their families.

While the NHSBT report covered all parts of the UK, the Scottish government issued a companion plan: A donation and transplantation plan for Scotland: more donors, more transplants, more lives saved. The difference in tone was startling, set from the start by the foreword penned by the public health minister: “Organ and tissue donation is a unique act of benevolence. Many donations occur immediately following tragic events or at a time of great sorrow. This proximity to loss and grief only makes the willingness of families to think of other people and to donate their loved ones’ organs all the more special.” The plan goes on to set out priorities that include “increasing the number of people in Scotland who have made their wishes about donation known” and “ensuring that the public in Scotland is informed and engaged about organ donation and transplantation.” The emphasis throughout the plan is on encouraging people to be informed, take a considered view, and then, if appropriate, to register their wish to donate. This is matched by a corresponding responsibility on the part of the NHS in Scotland to do all it can to fulfil those wishes – with an ethical imperative to respect any wish not to donate.

In her Afterword to the Council’s own 2011 report, the working party Chair Marilyn Strathern commented that “There are all kinds of ways in which people become involved in the health of others. But there has to be something quite special about that involvement when it draws on other people’s own bodily material … Keeping in mind the fact that material has come from someone is an ethical premise that informs this report.” The more people are willing to donate their organs and other bodily material after death, the more others, in serious health need, will be able to benefit. We must both encourage and celebrate donation. But the benevolence at the heart of that donation should always be topmost in our minds. To finish with a quote from Betty Taylor, an organ recipient whose story featured in the Scottish Government press release:  “I am so grateful that someone made the decision to join the NHS Organ Donor Register as that decision has saved my life. I often think about my donor’s family too and how they allowed the donation to go ahead which is very humbling.”

It may be unbearably hard for a family to make a decision about donation without knowing the wishes of the deceased person – so whether you live north or south of the border, think about what you would want to do with regard to donation – and tell your family!

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