I read word-by-word every paper that we publish in Journal of Advanced Nursing (JAN). I find them all interesting, for different reasons, but it is the papers that set me thinking which I value the most. In this issue, Sque et al.’s paper (pp. 134–144) about organ donation is certainly thought-provoking.
Organ donation was headline news recently here in Scotland, United Kingdom (where I live), reporting the first-ever ‘paired kidney swap’ between two couples previously unknown to each other. New regulations in 2006 in the UK under the Human Tissue Act now allow strangers to donate organs to each other, thus permitting ‘paired’ or ‘pooled’ donations where the partner or relatives are not a match. Even so, the waiting list for kidney transplantation remains long and, for all organs, there is a worldwide shortage of donors.
Many healthcare systems have been tackling this by introducing donor registers and expert donation teams. The ‘Spanish Model’ is regarded as the ‘gold standard’, Spain having risen from one of the lowest donation rates in the world to the highest. A system of co-ordinating the donation process is clearly essential, but it is relatives who remain the crucial link in the chain of supply. The reality, however, is that many relatives decline consent for organ removal, even when aware that the deceased person had, in life, been pro-donation.
Sque et al.’s study was commissioned by UK Transplant after high refusal rates among relatives were revealed in a national audit. Previous research into donation decisions has not focused on why relatives decline to consent, and so this is what Sque et al. set out to investigate. Through media advertising they recruited a sample of 26 relatives who had declined organ donation and, for those still harbouring feelings of guilt, they were relieved to find out that refusal is not uncommon.
Analysis of the interview data yielded six main themes relating to relatives’ decision-making. This JAN paper concentrates on the most frequently-recurring theme:- ‘protecting the dead body’. This reveals relatives’ fears and concerns about the actual act of organ removal, about the body of their family member being violated by being ‘cut up’. Thus, Sque et al. centre their discussion on whether the traditional message attached to organ donation as a ‘gift of life’ is failing to acknowledge relatives’ concerns; and, instead, they suggest that ‘sacrifice’ might be a more appropriate and more powerful construct.
One of the tests we apply to qualitative research is whether or not it seems ‘real’ and, for me, Sque et al.’s study passes the credibility test. Would I, like the relatives in their study, feel unable to consent to the removal of organs from my own next of kin even although I feel strongly, and always have done, that organ donation is a good thing? Would thinking about this as ‘sacrifice’ rather than ‘gift of life’ help me to decide? I think it might do. Importantly, this research underlines how difficult rational decision-making is at and around the time of a family death. I would much prefer not to have to make that decision at that time; and, for that reason, I welcomed our government’s request last year that the UK Organ Donation Task Force should explore the issues around presumed consent: that is, the presumption that everyone wants to donate their organs after death, unless they had registered an objection.
Across the spectrum of JAN readers around the world there will be all sorts of views about organ donation. In sharing my own thoughts, I am not advocating any particular position. But I do advocate that Sque et al.’s paper is well worth reading and I hope that it stimulates professional (and public) discussion, and also personal thought.