It was recently reported by the Guardian that there has been drop in organ donation rates in the UK.[i] It was also reported at about the same time that a woman successfully argued in the courts that her mother’s last will and testament should be over-ridden so that she might receive a bequest that her mother never wanted her to have.[ii] In different ways, in each of these stories the intentions of the living with respect to their own death come into tension with how those intentions are realised by those who are left behind.
Midcentury comedian Bobby Thompson played a character called the Little Waster, an anti-hero of working-class life in the 60s and 70s in north-east England, who captures the essence of the problem clearer than most in one of his tales. He is in his usual position, propping up a bar and wondering about how he is going to pay for his next drink and packet of cigarettes. A man comes up to the bar that he recognises as the local undertaker. The Little Waster thinks for a moment and then asks him, “How much are you going to charge our lass for my coffin?” The undertaker weighs him up and down and comes up with the figure of £10. The Little Waster, seizing his chance, replies, “Well giv’ us two pound and charge our lass twelve”.
At the time this joke was told, occupations and lifestyles determined that men typically died long before their wives. The waster knows this and also knows that his wife—referred to as ‘our lass’—is entrapped in the unavoidable obligations of kinship. She would pay £12 for his £10 coffin, and he would get £2 as a kind of proleptic mortuary payment to fritter away on his worldly pursuits. What the joke highlights is the problematic back and forth between our own wishes in death and the people who must realise these. The problem is that we will never be around to organise our own funerals or see that our wishes are carried out. As artist Marcel Duchamp so famously and succinctly captured on his gravestone: “After all, it is only others that die”. So, in the twenty-first century, what are the moral obligations of the living to the dead? This is a very important and pressing question, and one that everyone, in one way or another, will have to face.
Take, for example, the recent case of Heather Ilott of Ware, Hertfordshire. Heather was estranged from her mother following a teenage elopement that was disapproved of by her mother, who responded by disinheriting her errant daughter. Upon her mother’s death in 2004, the threat that was made decades earlier was carried through, and her ‘last will and testament’ declared that her £486,000 estate was to be left to various animal charities, leaving her daughter with nothing. Heather took the case to court and, after a slow progression through lower courts, the Court of Appeal ruled that she should receive a third of the estate.
Children being excluded from wills is, of course, nothing new. There are many tales of wayward children being ‘cut off with a shilling’, that is, given a derisory amount in a will in order to silence any other claims. In Heather’s case she didn’t even get the shilling. What is different in this case, however, is that the post-mortem adjudication in the courts signals a kind of rupture between the intentions of the living and the ability of various agents and agencies to ensure that these are carried out. The BBC reported that James Aspden, the solicitor representing the charities who were destined to receive the money, said it was a “worrying decision for anyone who values having the freedom to choose who will receive their property when they die”.[iii] A last will and testament, it would seem, is nothing of the sort.
While a person’s intentions and their realisation post-mortem are difficult where material property is concerned, these are are nothing compared with the plethora of issues that are currently opening up around the body and its fate after death. Let us begin with the National Health Service Blood and Transplant (NHSBT) Organ and Transplant Activity Report for 2014-15, which reported that deceased organ donation rates have dropped by 3%. This piece of news has alarmed the UK’s NHS Blood and Transplant community. It was suggested that the reason for the drop was not just because fewer people were dying in circumstances in which secondary use could be made of their organs and tissue, but also because, as the report states, “there has been no improvement in the consent/authorisation rate which remains stubbornly below 60%”.
Although expressed in the rather bland language of ‘consent’ and ‘authorisation’, these issues touch on mundane but complex questions of relationships, values and how these are expressed and communicated, not just in an individual death (a.k.a. ‘consent’), but also in the social setting within which every individual death is managed and given meaning (a.k.a. ‘authorisation’). Tragic circumstances can allow family harmony and solidary functioning to be heartwarmingly expressed, but they might also be occasions for disagreement, conflict and dysfunction to surface. What happens if I have given my consent to organ donation by virtue of having signed up for the Organ Donor Register, but in the event of my sudden demise my nearest and dearest can’t quite countenance my cornea, lungs, intestine, kidneys, liver lobes and much else being dispatched across the country and into cold storage, however worthy the cause? Indeed, family refusal rates are identified as a particular impediment to retrieval levels in the above NHSBT Activity Report. Or, what if I am not on the organ donor register but my family decides that it is ‘probably what he would have wanted’ (knowing full well that it wasn’t) and insist on having my organs and tissues dispatched anyway?
The issues become even more interesting when it is not only my family and friends who are puzzling over what to do in the event of my death, but when the state also enters the scene as the arbiter of what is rational, proper and benevolent. As a way of increasing organ donation rates many countries have been contemplating ‘opt-out’ schemes. Such a scheme already operates in Spain and one is coming into being in pilot form in Wales on December 1. At the moment the UK NHS operates a soft opt-in scheme, that is, I have to be on the ODR and organ retrieval will not take place if my family have any objections. There have been suggestions that a hard opt-in should come into play as a way of raising the number of donations. In such a scheme, my appearance on the ODR would operate as a legally binding contract, meaning that whatever objections my family had to the retrieval of my organs, the consent would over-ride and lack of ‘authorisation’ would count for nothing. My guess, however, would be that it would be a brave or extremely insensitive surgeon that went ahead with organ retrieval in the face of a family’s insistence otherwise. Opt-outs are a rather different matter in that a presumption is made that a person is a potential donor unless they have actively opted-out of the ODR. Implementation of such a scheme would suddenly turn the population of the UK into a vast field of publicly maintained organs and tissues which are there for the NHS to harvest on behalf of the nation unless individuals have expressly declared otherwise. As in the opt-in scheme there are soft and hard variants according to the presence or absence of the deceased’s family in the decision to proceed with retrieval. A soft opt-in would see everyone who hadn’t opted out of the ODR as a potential donor unless family raised objections. The hard version would give the family no such veto and operate with the rather contradictory notion of presumed consent. The scheme that will come into play in Wales is the soft opt-out version—even if I have not signed the register my organs will be deemed available, but my family will have the final say.
Each of these examples highlights fundamental changes in the way that I might think of my death in the context of my life. Moreover, these reflections are situated in my relationships with others and how they might think and act in the event of my death—What would he have wanted? Once upon a time, the relationship between family, property (including the body) and the will of the dead trundled along on well-defined tramlines of religion, ritual and law. In the Christian tradition, as well as the many secular ones that have been laid down upon it, in the UK the ‘last will and testament’ was just that: a set of inviolable instructions to be followed by those who are left behind. These verities also gave out onto a conventional and accepted repertoire of immortalities. Now, however, a much more complicated existential challenge is coming into view. The possibilities are expanding for how I might live on beyond my death and not just as a life-saving body part transplanted into the body of a stranger but as stem cells, tissues or as a plastinated teaching aide. A campaign strategy for the NHSBT to raise the numbers committed to donation is to encourage families to talk about what should happen in the event of a death—to ‘have the conversation’. Such conversations are believed to make the ones that will at some point take place across the great divide that separates the living from the dead that much easier for all concerned. Perhaps Bobby Thompson’s conversation with the undertaker was not quite what the NHSBT had in mind, but he had the right idea by having the conversation at all.
[i] James Meikle, “Number of people donating organs after death falls for first time in 11 years, Guardian, July 19, 2015.
[ii] Owen Bowcott, “Daughter wins £164,000 after decade-long legal battle over will with charities,” Guardian, July 27, 2015.
[iii] Clive Coleman, “Woman rejected by mother in will wins £164k inheritance,” BBC News, July 28, 2015.
Bob Simpson is a professor of anthropology at Durham University, UK. His research interests centre on the anthropology of biomedicine, bioethics and biotechnology. He was a member of the UK’s Nuffield Council on Bioethics Working Party on Donation and Human Bodies between 2009-11 and has published numerous articles on the circulation of blood, gametes and tissue in a variety of social and cultural contexts.