A story of organ donation and communication across the ‘great mist’ in Iceland
An online séance
In the spring of 2014 the Icelandic medium Júlíana Torfhildur Jónsdóttir, received a short but strikingly compelling message from ‘beyond the great mist’ (móðan mikla), as it is sometimes described rather poetically in the local language. The message was from a young man who, along with a number of others, made himself present during Júlíana’s séance. While short, the message was powerful and reverberated through much of Icelandic society in the days, weeks, and indeed months to follow. The séance being conducted online, Júlíana revealed the content of the message on her Facebook page that attendants, living attendants that is, had logged onto. According to reports, Júlíana said:
I’ll continue with the next one. Here is a young man who died in a car crash. He says, ‘There were two of us in the accident, me and my girlfriend’. I think he is saying: ‘I lived on, not for long but I was allowed to live on’. He says, ‘That’s how it was meant to go. We are happy to be together. Mum, thanks for making that decision’.
This meeting, or rather the relaying of it on Facebook, was quickly picked up by other people online and quite soon found its way into the newspapers and other mainstream media in Iceland. It was observed that all the people who made their presence felt across the great mist had died in incidents that been reported widely and whose deaths were thus easily uncovered by Google, which called the medium’s abilities into question, for many, and made her motives seem suspect. In one post the medium was accused of ‘playing Russian roulette with people’s feelings’, by suggesting the continuing life of someone who had reportedly passed away. The accusation centred not least on the visitation reported above and rested on the seemingly well-founded claim that knowledge of the information related by the medium rested in no way on any particular abilities she might claim to have or any communication across the great mist. [note 1]‘Midilsfundir a Facebook: “Verid ad spila russneska rullettu med tilfinningar folks”’, Vísir [online], 30 April 2014, http://www.visir.is/midilsfundir-a-facebook—verid-ad-spila-russneska-rullettu-med-tilfinningar-folks-/article/2014140439958.
Fatal car accidents are afforded particular prominence in the media in Iceland (see Árnason 2014). Each one is of immediate and often long-lasting interest to the national press. The circumstances of accidents are reported, the number and age of the victims detailed, and, once relatives have been informed, the names of those who perished are revealed. Later, when investigations into the accident have established its causes, the findings are reported too. And so anyone who was even vaguely aware of what had been going on in Iceland at the time would immediately have recognised the young man who made an appearance at the séance and the circumstances in which he met his fate. His death with his young girlfriend was particularly tragic, while also at the same time one of the best known stories of organ donation in Iceland, certainly in recent years.
Later on in this article I return to this story and indeed other stories of car accidents and organ donation in Iceland, in order to speculate on changing conceptions of death in the country and in particular in relation to developments in advanced medical knowledge and practice. The central question that this special issue addresses is how death is emerging as an opportunity. Advanced biomedical settings that exploit possibilities of using cadaveric materials make death appear as a resource in ways that it has not before. This appears not least through the demands of organ transplantation in a context where thanatopolitics (Douglas-Jones and Simpson, this issue) may have emerged as an important variant to biopolitics (see Foucault 2008). In a context where the line between life and death becomes blurred, for example around brain death, thanatopolitics may come to replace biopolitics, according to Agamben (1998; see Hall 2007). Drawing together Foucault’s notion of biopolitics and Agamben’s (1998) ‘bare life’, thanatopolitics can then be used to signal how government, understood in the broad sense Foucault (1991) employs the term, decides who should live and who should die and the uses to which the bodily material that death makes available should be put. The notion of thanatopolitics can thus signal attempts to investigate the part of government in procuring, circulating, and using cadaver tissue. The role that government plays here is, for example, putting in place the necessary legal and paralegal frameworks to secure what is deemed an adequate supply of the necessary material. It can be argued, in line with Foucault’s (2008) notion of biopolitics, that the strength of states will rest increasingly on their effective thanatopolitical governance of their population.
This is particularly relevant as it is now well established in the literature that discourses concerning organ donation are dominated by the notion of the chronic shortage of transplantable organs (Douglas-Jones and Simpson, this issue; Lock and Nguyen 2010, 234; Sharp 2006a, 2006b; Scheper-Hughes 2005). This is the case too in Iceland, where medical professionals, politicians and social commentators periodically make claims about the need for increased availability of transplantable organs. Insistent calls have been made to introduce legislation that would presume consent for organ donation in Iceland, as well as in many other national contexts. Some suggest that the possibility of organ transplantation in a system of presumed nonconsent places extraordinary strain on the relatives of those whose organs might be harvested (see Sharp 2006b). Even so, in a system of presumed consent, relatives’ objections would be the only obstacle to organ harvesting in the absence of the deceased’s prior opt out. It is important to keep in mind that moving from presumed nonconsent to presumed consent is unlikely to exclude further consent from closest relatives who are hence always likely to be potentially under ‘pressure’ to allow harvesting. It would seem that irrespective of the exact system of organising consent, death is beginning to appear as a resource to be used rather something to fight against. The tragic death of one is recast as the opportunity to enhance and possibly save the lives of many. Arguably this move signals a significant change in the conception of death in medical settings in contemporary Western societies where death has typically been understood as a failure to be avoided (see Sharp 2006b). The story of the séance and other similar narratives provide important insight into organ donations and the reformulations of death, but before exploring these further I must say something about the context in which they occur and especially about the taboo of death.
The medicalisation of death: Death as taboo, death as failure
This special issue proposes, amongst other things, that as biomedicine increasingly inserts itself into the spaces of degeneration and dying, death increasingly is seen as a resource to be exploited. This is a hugely important argument. What is the specific importance of death becoming a resource, as advanced biomedicine ventures further into the scene of mortality? How is this different from the place that medicine has long held in keeping people alive and administering their death (see Porter 1989)? Medicine has of course for a long time attended death, but the place that medicine has assumed at the deathbed and what it has aimed to achieve in so doing has changed over the centuries.
In establishing more clearly the importance of the argument this special issue offers, another story needs to be told. This is the story of the study of death itself. Death studies as such is not necessarily a recognised discipline in its own right, although for some time there has been a journal with precisely that title and arguably at least another two journals that speak directly to the interdisciplinary work that death studies gather together. [note 2]The journal Mortality is an example here of the interdisciplinary study of death, as is its associated Death, Dying, and Disposal conference series and the Association for the Study of Death in Society.
But it is an area of research that a number of scholars from such disciplines as sociology, history, theology, religious studies, anthropology, archaeology, law, literature, psychology, counselling, nursing, and medicine work in to examine the place of death in society and culture, not least Western culture broadly understood. The aims of those who work in this area are of course many and diverse but a key objective of this interdisciplinary effort is to identify the impact that social organisation around, and cultural conceptions of, death have on the processes of dying, disposal, and grieving. The impetus for the emerging of death studies was the realization, or claim, that in contemporary Western societies death had become a taboo, hidden away from public view, no longer accepted as a natural part of life. The suggestion is that death has been repressed in the same way that sex – according to the popular perception – was from Victorian times until the sexual revolution of the sixties. The aim of death studies, in important ways, has been to explain how death became this taboo and to tease out the implications of this for the living, the dying, the bereaved, and the dead. At times it has appeared that some practitioners of death studies might seek to instigate a ‘death rebellion’ to mirror the ‘sexual revolution’ and create what they see as the necessary and healthy openness around death, dying, and bereavement.
It is important for my purposes to examine somewhat further how death studies have accounted for the emergence of the death taboo. While there are examples about claims of a death taboo as early as the nineteenth century, it is generally accepted that the anthropologist Geoffrey Gorer (1965) was the first to make the observation in such a way that it was noticed and in a way that could claim to be supported by research (Walter 1994; Pearce 2016). Gorer is in the annals of anthropology mostly remembered for his contribution to the culture and personality school of thought and its work for the allied war effort. The wars of the twentieth century, particularly the First World War, also played a key role in Gorer’s argument about the disappearance of death from public life. Gorer argued that the enormity of the loss of lives in the great wars of the twentieth century and the political importance of not allowing those losses to sap morale in the midst of ongoing conflict played a crucial role in removing death from public life and limiting it to the private sphere. In arguing this Gorer drew on his own observations, reflections, and interviews carried out with widows in the UK in the years after the Second World War. In detailing the evidence in support of his argument, Gorer related vividly how dress and social etiquette designed to mark out bereaved people as bereaved – and women in particular – became more muted in the aftermath of the wars, drawing a sharp contrast between the experiences of his mother as a widow in 1915 and of his sister-in-law in the 1950s. In the time of his mother’s widowhood, Gorer said, there existed very clear, widely recognised, and well understood rules about the dress code of widows. Similarly social etiquette stipulated in such a way that everyone understood what would be appropriate for a widow to do, depending on the length of her widowhood. The same etiquette explained to others how to appropriately interact with those widowed or otherwise bereaved. This dress code and established etiquette had, said Gorer, disappeared by the time his sister-in-law was widowed during the Second World War. According to Gorer a dedicated effort was made by the government to discourage the wearing of black garments, or ‘widows’ weeds’, as such public display of grief, such public declaration of the enormity of loss, might undermine morale in the midst of a war whose outcome was as yet undecided. Thus death was increasingly cast as a private matter (Gorer 1965).
Gorer’s key aim was to highlight the consequences this disappearance of death had for people in mourning. Where before detailed rules guided interactions between the bereaved person and wider society, the taboo that fell upon death meant the disappearance of these rules and with them the knowledge of how to conduct this interaction. And so the bereaved were, Gorer said, increasingly ignored as their friends and acquaintances no longer knew how to interact with them and reacted in the only safe way available to them: avoiding the bereaved.
Gorer’s argument was later taken up by the French social historian Phillipe Ariès (1974a, 1974b, 1981) who traced in detail what he termed changing Western attitudes to death. While Gorer sees the First World War as a turning point, Ariès sees the contemporary death taboo as the culmination of a long historical process. Where Gorer is somewhat polemical, Ariès is the exemplary careful and measured historian. In detailing a long historical process, Ariès (1974b) draws a sharp contrast between a premodern approach to death, which he terms ‘tame death’, and the modern approach, which he says is ‘wild’. Tame death was marked by an acceptance of death as an inevitable part of life. People sought signs of death’s approach in order to prepare for its eventual arrival and put their earthly and their spiritual matters in order. The ideal was that the dying person would only pass away once they had made their peace with god, women, and men. Tame death thus involved an acceptance of one’s fate. It sat within a religious framework, held in place to some extent by a belief in an eternal afterlife available as a reward for the worthy. Crucially the extent to which people achieved tame death could in some ways be seen as an indication of the kind of afterlife awaiting them.
Wild death, by contrast, is seen as an alien intrusion into life, something to be fought and, if all else fails, ignored. The calm acceptance that was sought in preparing the dying for their death has increasingly given way to anxiety that can only be managed by avoidance. The reasons for the transition from tame to wild death – a transition that in Ariès’s (1974b) longer work is portrayed as taking place through a number of distinct stages – are complex. Even so, Ariès (1974b) appears to place a particular emphasis on the two distinct but related processes of secularisation and the rise of individualism. As established religion is undermined, and with it the power of the promise of eternal life, a fundamental support for framing mortality in terms of tame death has fallen away. Ariès argues further that with rising individualism, the individual emerges as the chief source and location of value in Western culture. As a consequence of this, the death of the individual – a loved one or oneself – becomes ever less accepted as part of life. It is the anxiety around the demise of loved ones and self without the hope of a reunion in an afterlife that renders death wild. Instead of being accepted as an intrinsic part of life, death increasingly becomes a problem for society. More precisely death becomes a medical problem, one to be overcome in each individual case and, eventually, as the fate of all human beings (see Illich 1974). This change is linked to a decisive shift in the role of the doctor at the deathbed. While previously the doctor was present as part of attempts to ease the dying person’s journey to the other world, and as such played second fiddle to religious figures, increasingly the doctor takes central stage as the one who fights the advent of death (see Porter 1989). This point was developed further by Ivan Illich who, in speaking of the ‘medicalisation of society’, claimed that medicine began to treat death as no longer a natural part of life but rather as a failure to be fought against. Illich echoed Ariès’s concerns about the consequences of this development for the dying, the bereaved, and indeed society more generally.
This is the story of death as taboo in modern Western societies as it has most often and most powerfully been told. It is a story that is of course contested (see Walter 1994, 1999; Seale 1998; Simpson 1987). Nonetheless, it has been largely accepted outside academic circles. Amongst people who work with the dying and the bereaved, the death-as-taboo thesis surfaces frequently as justification for the work being done. Indeed the hospice movement arose specifically to counteract the medicalisation of death. In this context, Tony Walter (1994) argues that death has, at least in Western societies, undergone a ‘revival’. Death, Walter claims, is no longer the taboo Gorer and Ariès depicted. In the Western world, he argues, people now deal with death more openly than they did before, as is evident from the growth of the hospice movement and bereavement counselling organisations. In an argument that clearly responds to Ariès, Walter argues that the revival of death stems from a conflict between modern, rational, bureaucratic medicine and the ever-increasing individualism in Western societies. Modern medicine has allowed ever-greater control over death, control that is possible because of medicine’s bureaucratic and rational manner of operating (Walter 1994, 22; see Douglas-Jones and Simpson, this volume). And this manner of operating works to deny people in contemporary Western societies what is most precious to them: their individuality. It is from this contradiction that the revival of death emanates, according to Walter (1994, 24). The continued rise of individualism that Ariès says fuelled the transition to wild death has in Walter’s account come full circle and now motivates people’s efforts to die and grieve in a manner true to their own individuality.
This, then, is the relationship between medicine and death that this special issue seeks to question. The suggestion is, that within biomedicine, and increasingly within society at large, death is no longer seen necessarily and exclusively as a failure to be fought against. Rather, the argument goes, death is now seen as a resource to be used to enhance life. It is important to recognise the role of the hospice movement in this context, which from Cecily Saunders onwards has sought to reconfigure death as an inherent part of life rather than its ultimate failure (see for example Walter 1994). However, the suggestion made in this issue goes further: to claim that death is not simply accepted as part of life but rather is in the process of being refigured as a resource to be mined to enhance life. In this context thanatopolitics may assume importance in a way similar to the significance of biopolitics in an earlier era: the strength of states will rest not least on their effective thanatopolitical governance of their populations, the adequate procurement, supply, and circulation of transplantable human tissue. The important argument that this special issue makes is thus of a profound change in death both within Western medicine and more broadly with Western societies. It is this argument that I will now seek to examine and add to with reference to the ethnographic context of Iceland
A story of death and organ donation in Iceland: When possibilities become expectations
It appears that no systematic study has as yet investigated attitudes toward death amongst medical professionals in Iceland. However, on the basis of anecdotal evidence, collected over now almost twenty years of researching changing regimes of death and grief in Iceland, I am going to claim that in the course of the latter half of the twentieth century, death became seen as a failure in the Icelandic medical system. This claim is in line with observations and arguments made by people who carry out death work in Iceland. People who have sought to change ‘the Icelandic way of death’, as they have sometimes referred to it in interviews with me and my colleagues (Árnason, Hafsteinsson, and Grétarsdóttir 2004), speak of death as having become a taboo over the course of the twentieth century. The transportation of death from the home to hospitals is a key part of the story as it is told, as is the perceived duty of doctors to preserve life at all costs. Death, it would seem, has been a failure to fight against. This certainly is the view expressed by three key commentators on the issue in Iceland. While placing differing emphasis on the role of medicine specifically, historian Bjarnason (1986), psychologist Björnsson (1993), and artist and art historian Sigurðsson (1996) all agree that death underwent the same process of marginalisation described by Gorer, amongst others, for Britain specifically and the Western world more generally. I offer here further somewhat indirect evidence in support of my claim. A couple in Iceland recently stepped into the limelight to express their hurt at the reactions to their decision that the husband would not undergo any further treatment for a malignant brain tumour. Detailing in a newspaper interview the story of the man’s illness and of the treatments he had undergone to date, the couple expressed their dismay at reactions that suggested that they had given up their fight for the husband’s life. [note 3]‘Erifiðast að horfa á maka sinn hverfa’, Vísir [online], 5 October 2016, http://www.visir.is/erfidast-ad-horfa-a-maka-sinn-hverfa/article/2016161009320.
In light of the above it might be suggested that the notion of thanatopolitics does not apply in the Icelandic case, that it would be more accurate to speak still of biopolitics. But what is the claim that the state has over people’s bodies in death in Iceland? The death penalty has been outlawed in Iceland for decades; the state thus does not claim ownership over the bodies of convicted criminals in life. However, doctor-assisted suicides remain illegal in Iceland despite the emergence of organisations promoting what they call ‘death with dignity’. Living wills are as yet not recognised in the country and the general principle is that relatives are responsible for the disposal, usually burial, of their deceased family members. Still, the state has a potential claim over all dead bodies. While autopsies in general are only to happen with the agreement of the family of the deceased, in cases where there is a legal, as opposed to just a medical, necessity for an autopsy, the state can seek court permission against family wishes and would expect to be given that permission.
While an important, if not the dominant, response to death in Iceland may be consistent with the language of failure, the hospice movement in the country has in the last thirty years sought to reformulate death as the last stage of life, rather than life’s failure. The question of organ donation and transplantation has further complicated this story in recent years. Organ harvesting and transplantation was made possible in Iceland with legislation passed in 1991 (no 16/1991). According to this law, people over the age of eighteen can give consent to their organs being harvested. If consent is not present, their closest relatives can give permission for harvesting provided it seems clear the deceased would not have objected to this. Knowledge of this detail of the law seems important in the communication reported by the medium that I related at the beginning of this article.
In Iceland, as in many other national contexts, the discourse surrounding organ procurement is, at least when it takes centre stage, dominated by the notion of shortage (see Douglas-Jones and Simpson, this issue; Lock and Nguyen 2010, 234; Sharp 2006a, 2006b; Scheper-Hughes 2005). This has been evident, for example, following the story I related earlier. In the last two years three substantial dissertations at universities in Iceland, all based on original empirical research, have addressed this issue and speculated on the best way to secure adequate supply of organs (Birgisson 2015; Jónsdóttir 2015; Rúnarsdóttir 2014). In Iceland, a fundamental question when it comes to nonliving donors is whether presumed consent and an opt-out system is justifiable and would work to increase the supply, in line with systems being put in place in Spain and Wales. The different authors all agree that the supply of organs cannot at present meet the demand, that demand is likely to increase, and that waiting times for those in need of transplantable organs will only increase. The authors report significant support for presumed consent in Iceland, while noting the relatively small proportion of people who have actually registered as potential donors themselves. The authors too seem less than convinced that presumed consent will necessarily work to increase the availability of transplantable organs as relatives would likely still retain a final say (Birgisson 2015; Jónsdóttir 2015; Rúnarsdóttir 2014). The Icelandic parliament has discussed the issue and a bill to move to presumed consent has been presented but has as yet not made it through the different stages of discussion. It seems clear that there is more than sufficient support for such a change of legislation in Parliament and the reason for why the bill has not been voted on is lack of time and the prioritising of other legislation. The Directorate of Health in Iceland now offers people the chance to express their wishes regarding the possible donation of their organs should the situation arise where that might become possible.
Here the story I started with begins to have particular relevance for our understanding of the retaming of death that is taking place. It is not least around stories like this that discussions about proposed changes in legislation come to the fore. The debate about organ donation in Iceland reached a high point towards the end of January 2014, when the young man in question died. His parents have since been vocal about their decision to agree to the use of their son’s organs. His mother made the case that the law made things more difficult for relatives like themselves who, on top of their huge loss, were suddenly faced with the decision as to whether their loved one might be an organ donor. She states powerfully that presumed consent should clearly be the legal position. [note 4]‘Auðvitað ætti áætlað samþykki að vera útgangspunkturinn’, Vísir [online], 18 April 2015, http://www.visir.is/-audvitad-aetti-aetlad-samthykki-ad-vera-utgangspunkturinn-/article/2015150418949.
About a year after this young man’s death, one of the television stations in Iceland ran a programme on a twenty-year-old woman who had died in a car accident. Not long before her death the young woman had registered as an organ donor with the Directorate of Health. The programme noted that six people, amongst them two young children, were recipients of organs from the woman, as her heart, lungs, liver, kidneys, and pancreas were all transplanted to patients on waiting lists. A spokesperson for the Directorate of Health related that the TV programme on the young woman seemed to have caused a 36 percent spike in the number of people registering their wishes with the directorate. [note 5]‘36 prósent fleiri lífæragjafar eftir sögu Dagnýjar’, Vísir [online], 19 January 2015, http://www.visir.is/article/20150119/FRETTIR01/150118998.
Now, I want to return to the séance and recall the words the medium received across the great mist:
Here is a young man who died in a car crash. He says, ‘There were two of us in the accident, me and my girlfriend’. I think he is saying: ‘I lived on, not for long but I was allowed to live on’. He says, ‘That’s how it was meant to go. We are happy to be together. Mum, thanks for making that decision’.
The séance, as related already, took place online and interested parties could follow it there. However, there is no indication that the parents, or any other close relations of the young man in question, were logged onto the session. Even so the message the medium relates is striking in its attempt to offer comfort to those suffering. It was this attempted support that prompted some to remark that the medium was playing a dangerous game with people’s feelings.
Closer inspection reveals that there are three elements to the comfort offered by the medium. The young man accepts that this was to be, this was to happen, this was his fate. While there is not the space here to dwell on the issue, I must note that this kind of fatalism is strikingly common in Iceland in relatives’ accounts of loss in general but in particular in losing young people and not least when they have died in car accidents. Sometimes such fatalism is present even as the very aim of the relating of the experience of grief is to enhance road safety, to warn others of the possibility of death, of the potential of harm. When a story is being offered as a warning, its major event is presented as inevitable and the relative will recount the foreboding they had before the fatal accident happened. Such fatalism is of course famously a key trope in the Icelandic Sagas, the knowledge and the acceptance of death foretold offered as a clear sign of the heroic stoicism people were to strive for. The legacy of the Sagas looms large in Iceland still (Pálsson 1995); one of the most popular refrains in obituraries comes from the Eddic poem Hávamál, which declares the inevitability of death and stresses that only renown and honour survives. Such fatalism is, I might suggest, not unrelated to the possibility of someone emerging as a possible organ donor, both because the death has been marked as inevitable and because of the possible honour to be secured from donating transplantable organs. Secondly, the message that the medium relates offers comfort in that the young man also seems happy that he and his girlfriend are together. There is the suggestion here of a joint existence to shadow the life together they might be imagined to have shared had they lived. And, thirdly, he thanks his mother specifically for making the decision she’s made. That decision, it is clear to those who know the story, is to turn the young man’s life support off, and to give permission for his organs to be donated.
There are two threads that I want to pick up here that I hope to be able to weave together into something more substantial. In extensive interviews with the parents and siblings of the young man, they speak of the comfort, ‘joy’ even, they have received from knowing that their son’s organs had saved the lives of others. In a newspaper article published a few days after his death it is stated that six people had received organs from the young man and because of that now live. Amongst them, the story continues, is a sixteen-year-old boy who received the young man’s heart. The title of the article, a quote, says: ‘It helps us through our grief to know that his heart continues to beat’, a sentiment that is echoed by the young man’s brother in the article itself. [note 6]‘Það hjálpar okkur í gegnum sorgina að hjarta hans slær áfram’, Vísir [online], 29 January 2014, http://www.visir.is/-thad-hjalpar-okkur-i-gegnum-sorgina-ad-hjarta-hans-slaer-afram-/article/2014140128673.
Organ donation is clearly positioned here as a form of relief from otherwise crushing grief.
This is not surprising. Seeking meaning, value, and sense even in tragic death, particularly the untimely loss of a young life, is common enough. This was made evident for example in Simpson’s (2001) analysis of the Diane Blood case. Bloch and Parry (1982) have spoken in more general terms about the importance that in many ethnographic contexts is placed upon turning ‘bad’ deaths into ‘good’ deaths. Untimely and accidental death, such as the one I have spoken of, is doubly ‘bad’. It is surely more than understandable that relatives should in this case seek value and meaning in their terrible loss. Even so, the importance of the point here is heightened by the second thread that in turn moves us towards some of the implications that flow from making death meaningful in this way.
The other thread that I want to pick up here is how the story of the young man and in particular the story his parents tell of their experience has, as have similar stories that surface from time to time, been mobilised in campaigns urging people to register as organ donors. Stories of ‘bad deaths’ that through organ donation were recast as ‘good’ are central to the rhetoric of increasing the supply of organs for transplantation. The issue of demand and scarcity comes powerfully to the fore here. Repeatedly the point is made that transplantable organs are a scarce resource: many people, too many people, suffer and die prematurely because the organs that should be available and would save them are not being offered. An editorial in one of the national newspapers in Iceland expresses this forcefully, suggesting that donating organs is a moral duty that people should not shirk, inadvertently echoing Strathern’s (2009) argument about organ donation as a new form of commons. The author claims that more people will die waiting for transplantable organs than will become recipients (Kjartansdóttir 2013). In such campaigns, the experiences of parents who find relief from their sorrow in the use made of their loved one’s organs of course play a powerful role.
A characteristic of the campaigns to increase the number of donated organs in Iceland is how the possibility of transplantation is turned into a need (see Sharp 2006a, 2006b). We are told repeatedly how many people die while waiting for organs, how long people have to wait for new organs, and that the demand for organs will inevitably increase (for example Kjartansdóttir 2013; Pálsson 2005). This is framed morally as if the technology, the ability to extract and transplant organs, answers the moral question of donating. The web page of the state-run Directorate of Health in Iceland displays prominently a link to register one’s wishes regarding organ donation. The link states that it is important ‘for you to make up your mind if you want to donate your organs after your death. Organ donation’, it continues, ‘can save human lives and that’s why it is important that as many as possible make their wishes regarding organ donation clear’. The rhetorical force here, it seems clear, is to convince people that their wish is to donate. Having reassured readers that they can later change their minds and having listed the possibilities of donation (not at all, all organs, or only some organs), the link concludes: ‘Organ donation can save, enhance, or improve the life of another human being. Make a choice!’ [note 7]Mikilvægt er að þú gerir upp hug þinn um það hvort þú vilt gefa líffæri þín eftir andlát þitt. Líffæragjöf getur bjargað mannslífi og því er brýnt að sem flestir komi afstöðu sinni gagnvart líffæragjöf á framfæri. Á þessu vefsvæði getur þú tjáð vilja þinn til líffæragjafar. Ef þú skiptir um skoðun getur þú alltaf breytt vali þínu á þessu sama vefsvæði. Líffæragjöf getur bjargað lífi annarra eða lengt og bætt líf. Taktu afstöðu! [This and subsequent translations by Arnar Árnason]
While the text suggests a degree of neutrality, at the same time it places the onus firmly on potential donors to make the right moral choice. A 2005 editorial in Læknablaðið, The Icelandic Medical Journal bemoans the lack of cadaver donations in the country and turns organ donation into a national duty. The author states:
Icelanders are a small nation, known for being helpful to each other when circumstances have necessitated it. We should thus be able to do better when it comes to organ donations. Working together we should be able to increase the number of donors and thus give more people the hope of life. A more worthwhile task is hardly imaginable. [note 8]Íslendingar eru lítil þjóð sem hefur verið þekkt fyrir hjálpsemi í garð samborgaranna þegar neyð steðjar að. Við ættum því að geta náð betri árangri hvað snertir líffæragjafir en raun ber vitni. Með samstilltu átaki ætti að vera unnt að fjölga líffæragjöfum og gefa þannig fleiri einstaklingum lífsvon. Göfugra verk er vart hægt að hugsa sér.
The mention of the smallness of the Icelandic nation here carries a double moral imperative. On the one hand it is to suggest a closeness, a knowing of and connection with others, a tie of real kinship running between all its members. On the other hand it is to evoke the well-worn story of a small nation struggling for its existence in a harsh, if beautiful, environment, often against the workings of much bigger foreign powers. Here organ donation takes on a national and not simply a personal importance. It is cast as part of ongoing efforts to ensure the survival of the nation.
Grief, biopolitics, thanatopolitics: Towards tentative conclusions
Foucault’s (1991, 2008) notion of biopolitics signals power as exercised over the very mechanisms of life, the administration of life for the strength of the state. It is power that seeks to enhance the well-being and productivity of the population precisely because the relative strength of the state is seen to depend on the strength of its population. Biopolitics is thus a governmental rationality that takes the population with its own dynamic laws of development as the fundamental reality that needs to be governed (Gordon 1991). According to this framework, it would seem clear that death saps the strength of the population and as such is to be fought against.
Death undermines the strength of the population of course through the lives lost but, it may be argued, also through the effect it has on those left behind. A National Hospital of Iceland brochure titled ‘On the Death of a Loved One’ says:
The death of a loved one is an experience that can have profound and varied impact on bodily well-being, emotions, thoughts, and the behaviour of the bereaved. When grieving it is important for us all that this impact is acknowledged and that we are given the chance and the time to share this experience with those close to us and others who are willing to help.
A brochure for parents of stillborn babies, or babies who die very soon after birth, from the same hospital, adds:
Parents will have to deal with emotions that are in most cases alien to them… . Experience has shown that parents can manage their grief better if they look death in the eye, instead of avoiding thinking or talking about this fact of life or pretending that the baby never existed. The fact is that parents never forget, nor do they want to forget that they had a baby even if the life of that baby was confined to the womb. Everybody experiences grief and loss when a loved one dies, albeit in different ways. We have to let grief in to adjust to the loss we have suffered. For most people this process of grief is more prolonged than they expected. It simply takes a long time to get over the loss of a loved one.
A suggestion is made here that people may seek to avoid facing death, and that people’s grief will be better managed if they do acknowledge death openly. Guidelines for health care workers published by the Icelandic Directorate of Health say that: ‘The loss of a loved one is followed by grief and loss. The care of the bereaved at the time of death can be crucial for their grief process’. While grief is thus established as a problem to be dealt with, at the same time it is constructed as an opportunity for growth. One of the most prominent campaigners for a new and more open regime of death and grief in Iceland, Birgir Ásgeirsson (1991, 8), noted some time ago in an oft-quoted passage:
Many will agree that the most powerful force [sterkasta afl] of human existence [mannleg tilvera] are the bonds of love [kærleiksbönd] which tie loved ones [ástvini] together. When these bonds break for whatever reasons it causes great pain [sársauki] that reaches into the deepest parts of human consciousness [dýpsta vitund mannsins]. Such threads [þræðir] are invisible because they are emotional in nature [tilfinningalegseðlis] but make themselves felt in various and often dramatic ways both at happy and unhappy times.
Ásgeirsson goes on to articulate how the resolution of grief can be an opportunity for personal growth (persónulega þroska), a chance to cultivate one’s inner being (rækta sinn innri mann). He writes:
If things go badly, grief can have very serious consequences, consequences that can lead to terrible unhappiness [vansæld], even illness [veikindi]. If everything goes well it can turn to [huggun] personal growth [lífsþroska] and increased personal strength [styrkur]. At its best grief manages to develop into resolution [sátt] and inner peace [innri friður]. (ibid.)
Stories of the resolution that comes from knowing that the vital organs of one’s loved ones may have saved the life of someone else are important in campaigns that seek to increase the availability of transplantable organs. What may be the implications of such campaigns in a context of thanatopolitics where the boundaries between life and death are, arguably, increasingly malleable and the demand for transplantable organs seems only likely to rise?
The 2000s saw the unfolding of the Alder Hey scandal in England when it surfaced that a doctor at the well-known children’s hospital had collected organs and tissue samples from deceased babies without the knowledge or consent of their parents (Milmo 2004). A few years later the baby ashes scandal emerged in Scotland as it was revealed that numerous parents, whose babies had been cremated upon death, were told that there were no ashes to be collected after the cremation. [note 9]‘Mortonhall Baby Ashes: Report Says Scandal Was a “Great Tragedy”’, BBC News online, 30 April 2014, http://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-27211583.
Both events point to the importance attached to knowing and controlling what happens to the remains of your loved ones. No such scandal has as yet hit Iceland. However, many folk stories in Iceland tell of ghosts concerned about their bodily integrity in death. They visit the living, usually in dreams, to request that their bones – that might have been scattered for a number of reasons – be brought together so that their remains are all in one place. Once, the proper treatment of human remains was keeping them together, but today being willing to donate one’s organs has become the sign of humanity. Vital organs are here construed, as Sharp (2006a, 2006b) has noted, simultaneously as precious, personal, and impersonal. A young man’s parents find solace in his heart beating on. The solace to be gained from knowing the organs of your loved ones are enhancing the lives of recipients clearly makes those organs powerful relational objects. At the same time, transplant medicine sees this heart as a perfect substitute for someone else’s heart, fully incorporated in another’s body (see Sharp 2006b, 7). Anthropologists (see Conklin 2001) have speculated on funerary cannibalism as a form of the identification that Freud (1917; see Fuss 1995) spoke of, the incorporation of the lost love object into the being of the mourner. This is of course not what happens in organ donation. But still the donated organ as a powerful relational object, while incorporated by the recipient, allows the identification of the bereaved with the donated organ and through that simultaneously with the deceased and the living recipient. Organ donation can work simultaneously to give life to patients on transplant waiting lists and to the relatives of donors. There is perhaps a connection here between the idea of death as a resource, rather than a failure, and a particular notion of grief as an opportunity for personal growth. The connection, of course, hinges on transplantable organs. They are, we are told, in fatally short supply. In this particular ethnographic context the ‘nation’ has been evoked powerfully as a context for donating. Registering as potential donor, or agreeing to the transplantation of the organs of your loved ones, has been established as a contribution to the ongoing struggle of ‘a small nation’. If the vital scarce resource is transplantable organs that can save others, then clearly death is something that is not simply a failure but rather something that can be a resource too.
My thanks to the editors of this special issue, Bob Simpson and Rachel Douglas-Jones, for the opportunity and their support; to the editors of the journal for their help; and to the anonymous reviewers for very helpful suggestions. My thanks to my colleagues and writing partners Nancy Wachowich and Tanya Argounova-Low and to my friend and colleague Sigurjón Baldur Hafsteinsson.
About the author
Arnar Árnason is a senior lecturer in social anthropology at the University of Aberdeen. He has carried out fieldwork in England, Japan, Iceland, and Scotland on topics such as death, emotion, and psychotherapy, and the politics thereof; subjectivities/subjection; narratives, memory, and forgetting; embodiment; and identity and landscape.
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