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Nursing Inquiry 2013; 20(3): 245–255

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Enacting death: contested practices in the organ donation clinic Hans Haddersa and Anne Hambro Alnæsb aFaculty of Nursing, Sør-Trøndelag University College, Trondheim, Norway, bSection for Medical Ethics, Department of General Practice and Community Medicine, University of Oslo, Oslo, Norway Accepted for publication 17 April 2012 DOI: 10.1111/j.1440-1800.2012.00603.x

HADDERS H and HAMBRO ALNÆS A. Nursing Inquiry 2013; 20: 245–255 Enacting death: contested practices in the organ donation clinic Based on the fieldwork at two Norwegian Intensive Care Units, we wish to discuss the sometimes inconsistent manner in which death is handled, determined and made real by nurses and other healthcare personnel in high-tech hospital situations. These discrepancies draw our attention towards different ways of attending to the dying and dead and views about appropriate or inappropriate codes of professional behaviour. As we will argue below, the analytical tools developed by Annemarie Mol are useful for sharpening our understanding of the enactment of multiple ontologies of death as they are enacted within the ICU. Annemarie Mol and John Law’s notion of ‘ontological politics’ increases our awareness about the non-arbitrary way some but not other practices are considered self-evident whereas others are denigrated as muddled and illogical. Key words: brain death, enacting death, intensive care unit, multiple ontologies, organ donation.

Barnard’s pioneering heart transplantation in 1967 created headlines and ignited great hopes about the potentials of transplantation medicine. The world’s first successful heart transplantation paved the way for redefining death, a process culminating in the Harvard Ad Hoc report (Beecher 1968). Manipulating the definition of death facilitated the procurement of organs. Surgeons could now legally remove the organs of heart-beating (but brain dead) ‘patients’ without being sued for homicide. Death was understood as already having occurred. This clinical window of opportunity opened up with the advent of the mechanical ventilator. These machines could either tide a patient over a crisis or temporarily replace severely brain-damaged patients’ circulation. Combined with 24-hour medical treatment, monitoring of blood pressure, oxygenation levels and other medical parameters, it became possible to manage brain-dead patients’ organs. As a consequence, brain death following cardiac arrest could be distinguished from cardiac death ensuing after brain death. The inevitable hypothermia, stiffCorrespondence: Hans Hadders, Associate Professor, Faculty of Nursing, Sør-Trøndelag University College, Øya Helsehus, 7004, Trondheim, Norway. E-mail:

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ening and putrefying of a deceased patient’s body could be suspended. This respite gives the healthcare staff time to request the next of kin to consent to the donation of their deceased’s organs to patients on the organ waiting list. However, the existential anomaly of these cerebrally non-functioning but apparently breathing patients necessitated the establishment of new procedures and codes of behavior. The way healthcare staff should care for and interact with these ‘neomorts’ and their next of kin is not obvious and needed careful consideration. The following paper evolved when we explored and discussed the differences and commonalities in our field work observations which both focused on the unusual, but highly structured, death processes in the ICU. Hans Hadders (HH) study (2003–2006) followed several years after Anne Hambro Alnæs (AHA) research (1996–1998). AHA’s fieldwork was concerned with documenting the next of kin’s layered decision-making. HH’s research focused on variations in how healthcare personnel enact death and handle the dead patient. In spite of initial differences in our theoretical concerns, methods and aims, the common ground we shared caused us to probe deeper into how the finality of death in these situations is accomplished, on multiple levels.

H Hadders and A Hambro Alnæs

MULTIPLE ONTOLOGIES AND MEDICAL PRACTICE: ANALYTICAL APPROACH In her book ‘The Body Multiple: Ontology in Medical Practice (2002)’ Annemarie Mol presents a detailed ethnography of atherosclerosis in the leg vessel, based on fieldwork at a university hospital in a medium-sized Dutch town. Her descriptions and comments are accompanied by an analytic under-text laying the theoretical ground for what she terms a ‘praxiographic’ approach. ‘Praxiography’ refers to a careful description of how ‘objects’ or entities, amongst them diseases such as atherosclerosis, are constituted in multifarious ‘doings’. Mol – who categorizes herself as an empirical philosopher – regards her approach as an extension of science and technology studies (Mol 2002, 31–6). Utilizing insights from actor-network-theory, Mol launched the term enactment to describe the multiple ‘doings’ in medical practice, which manifest themselves in relational networks between actors and actants, human and non-human, such as healthcare personnel, medical equipment, legal acts, protocols and procedural manuals (Law 2004, 157; Latour 2005). Mol and Law’s notion of ‘ontological politics’ focuses on the non-arbitrary way some but not other practices are chosen above others and considered self-evident. (Law 1999, 2004; Mol 1999). In the organ donation clinic, these practices are based on a mixture of evolving laws, provisions, new medical insight and public demands to render more transplantable organs available. Mol’s approach opens up a multitude of choices and doubts about which ontologies are to be enacted within various medical practices. However, she refrains from analysing the ‘ontological politics’ and implementation of various enactments and steers away from contested issues, leaving us with many loose ends (Mol 1999, 83; 2002, 178). She for instance avoids discussing the detailed dimensions of power and agency, including who has the mandate and right to define protocols and clinical procedures both of which remain debatable issues. Timmermans characterizes her venture as ‘somewhat disappointing’: ‘Mol refuses to recommend any intervention, advocating instead for a politics of continuous doubt… While de-centering human subjects and eschewing normativity, we lose track of the purpose of medicine’ (Timmermans 2006, 27–8). We do not advocate any particular enactment of death at the expense of other equally ethical, logical and consistent ways of ‘doing’ death. Instead we wish to apply Mol’s approach to explore how ‘ontological politics’ affects the way death situations are handled in the high-tech citadels of late modern hospitals.

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Following Mol, we focus on the multiple enactments of death at the ICU (Mol 2002, 152). We argue that death, within the late modern context, is a multiple affair, embedded in medical, social, legal, ethical, aesthetical and economical practices – at individual as well as collective levels. Hence, the process of becoming dead, in a wider sense, is no longer non-debatable, at any rate within the context of hightech hospital care. Before embarking on the discussion, it is essential to emphasize that we do not wish to enter into the metaphysical discussions which in recent years has beset the brain deathconcept (Veatch 1999; Youngner, Arnold, and Schapiro 1999; Chiong 2005; Bernat 2006; Truog 2007), or question the predominantly positive attitudes people harbour towards transplantation medicine. Nor is it our aim to erode the general public’s trust in the medical profession by raising doubts about doctors’ possible double role as providers of care and procurers of organs. In Norway’s 1973 Transplantation Law, a strict division of roles is stipulated: doctors involved in donation situations are prohibited from partaking in transplantation decisions and procedures. Rather, by acknowledging the political, legal and ethical bases behind, the now no longer unquestionable premises for when a potential organ donor is ‘sufficiently dead’, we are better prepared to recognize the utilitarian purposes behind the criteria for procuring organs (Rubenstein, Cohen, and Jackson 2006, 11). Examining deaths linked to organ donation may also further our insight about the way death in other hospital wards is presently handled. We argue against a narrow agenda for the standardization of medical death. Our intention is to open a space within which the differently positioned mediators of death – doctors, nurses, hospital chaplains, pathologists and orderlies – can engage in creative friction with one another. As many as 75 professionals may be involved in a single donation case, directly or behind the scene. Clashes in approaches and ways of handling death in hospital settings need not lead to chaos and professional rivalry, but can instead, we feel, be harnessed to provide new insight that can improve professional co-operation and coordination.

DETERMINING BRAIN DEATH: A BRIEF REVIEW The development of the mechanical ventilator has had far ranging ramifications for the way death is accomplished, or in Mol’s words, enacted, in the organ donation clinic. However, although the use of the ventilator is a necessary condition, it is far from a sufficient criterion for the legal procurement of organs. In 1973, Stortinget (equivalent of


Enacting death in the organ donation clinic

Norway’s Parliament) passed a combined law on transplantation, autopsy and rules for anatomical dissection (Ministry of Justice and Police 1973). This Act and its provisions1 constitute the legal platform for enacting brain death. Norwegian legislation is based on the Dead Donor Rule, a taken for granted tenet that nevertheless since has been the cause for lengthy discussions and disagreements (Youngner, Arnold, and Schapiro 1999; Lock 2002; Truog 2007). The Law’s provisions stipulate the criteria which must be fulfilled to certify a patient brain dead. To enact brain death in accordance with the provisions, healthcare personnel perform a battery of bedside and advanced invasive tests. Detailed procedure guidelines issued by the Norwegian Organ Donation Council (NOROD) about tests, which steps to follow, the order of various tasks, when to inform the National Transplant Unit about the likelihood of a potential donor, and rules about avoiding conflict of interest, are available on the shelves at all 28 donor hospitals’ ICUs (NOROD 2004).2 Section 1 of the provisions for The Transplantation Act states that a patient is dead when signs of total destruction of the brain are evident, with complete and irreversible cessation of all functions in the cerebrum, cerebellum and brainstem. Section 2 specifies the criteria that must be met. The patient must not be able to breathe unassisted, and his ⁄ her unconscious state not be ascribable to drugs or medication. A battery of bedside tests and advanced radiography (cerebral angiography) are performed to document the absence of brain nerve activity and the cessation of blood flow to the brain. Cerebral angiography (mandatory in organ donation situations) is conducted as an extra precaution to distinguish persistent coma from brain death.3 The final enactment of brain death is the signing, in three copies, of a special certificate used solely for patients diagnosed as brain dead. The certificates must – in addition to the physician responsible for the patient – be signed by two physicians who are not involved in procurement surgery or who partake in the ensuing transplantation of the organs. This official document (in three copies) is mandatory in addition to the standard death certificate (HOD 2004; NOROD 2004; Meyer 2005). The protocol regulating organ donation suggests the multiple characters of organ donation deaths. For organ donation to be legal, the distinction between irreversible coma and brain death needs to be verified and enacted by a neuro-radiologist. The formal ‘moment of death’ is the time

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The provisions for The Transplantation Act were revised in 2004.

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The procedure guidelines were revised in 2010.

In a 1993, amendment (1–39 ⁄ 97) of the 1977 provision defining the criteria for diagnosing brain death and arcography was included as an alternative to selective cerebral angiography.

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of death registered by healthcare personnel in their written documentation. For patients whose organs are to be donated, the formal ‘moment of death’ coincides with the point in time when the results from cerebral angiography confirm irreversible cessation of all blood flow (NOROD 2004). If, on the other hand, the next of kin decide against donation, a different procedure is followed. No cerebral angiography is conducted, and the standard death certificate only the needs to be signed by one doctor. In such instances, the patient’s death ensues after ventilator withdrawal, often with the relatives present. When the cardiac monitor screen shows that all heart activity has ceased, this is the formal ‘moment of death’ (Meyer 2005, 163; Hadders 2009b).4

BRAIN DEAD DONORS The difference between interacting with a live patient versus someone who is brain dead but who retains enough vitality to save patients on the organ waiting list is not always obvious, either to staff or to relatives. As Truog (2007, 275) points out, brain dead donors share more characteristics with the living than with the dead; indeed the former two resemble each other in most ways except one: brain dead donors have lost the capacity for consciousness. Throughout the care of these severely damaged patients, the healthcare staffs have to maintain a demanding double focus; they nurse and treat a patient whom they hope will recover, yet know that they soon may be managing ‘only’ the donor’s organs. At first the ventilator buttresses the dead patient’s own breathing capacity. But little by little the breathing machine takes over completely, and the dead patient’s body becomes the equivalent of an ‘incubator’ of its organs, a donor. The deceased’s oxygenated organs represent embodied life, but only within a short window of opportunity, and only if they are transferred within the span of a few hours into the bodies of patients on the organ waiting list. Providing transplantable organs for patients on the waiting list depends primarily on the next of kin’s consent, but also on the availability of healthcare staff, their communicatory skills and their ability to maintain the vitality of a newly deceased patient’s bodily functions. Much, then, is at stake. The empirical cases, on which the following discussion is based, are founded on two separate fieldwork materials from the ICUs of two hospitals in Norway. To present a cohesive

Withdrawing ventilation treatment and facilitating death with so-called terminal weaning is undertaken without fear of litigation and is part of end-of-life care at the ICU. In Norway, there is no legal requirement to wait for heart activity to cease before disconnecting the ventilator (Hadders 2009b, 578).

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and readable account, we present the premises of each study in the beginning of each authors’ discussion as a footnote.

ENACTING DEATH IN THE ORGAN DONATION CLINIC Something as intuitively singular as death can – in organ donation situations – perhaps be fruitfully understood as consisting of multiple enactments of death, the one supporting and confirming the other, but on different levels. Of AHA’s 26 case studies, two are particularly well-suited to bring out the enactment-perspective of deaths involving organ donation. Some of the awkward paradoxes in these cases are not necessarily unique for donor families but have applicatory potential on a more general level. Below follow AHA’s field observations. Mol’s enactment perspective are written in italics as they stem from discussions when the two authors re-evaluated their findings in the light of Mol’s 2002 theses, that is, ten years after AHA conducted fieldwork.5

Case I The first case involves an 18-year-old youth who had been severely injured in a car accident. Soon after being flown in to hospital, the neurosurgeon and intensivist had telephoned the National Transplant Unit (NTU) to inform the transplant coordinator of a potential donor. When AHA arrived at the ICU, the patient was hooked up to a ventilator and given medication to reduce brain swelling in a futile hope that he might perhaps survive. The parents and siblings were pacing the corridor, nervously waiting for the neurosurgeon’s prognosis. Before the next of kin had any idea about the decision alternatives they would be facing within the next hours, the patient’s blood had already been sampled and despatched by plane to the NTU, enabling the staff there to tissue type the patient and start selecting potential recipients. Such blood samples are sent to the NTU provisionally, as the go-ahead for donation depends on consent from the not-yet-dead patient’s family. In practice, though, the nurses and doctors regard the taking and sending of AHA’s contribution stems from anthropological fieldwork (1996–1998) at the ICU of a Norwegian University Hospital (Hambro Alnæs 2001). Her aim was to expose and analyse the culturally based reasons why some next of kin consented to donation, others declined. The material consists of 26 donation case studies, including notes taken at the ICU during 12 of the cases, some of which ended by family refusal. Observations at the ICU were expanded by follow-up conversations with donor and non-donor next of kin (n-100) in their homes 6 weeks later. Research permission was granted by the Regional Ethics Committee and depended on donor families’ and healthcare staff’s informed consent. The study was accepted as AHA’s PhD in 2001.

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blood samples in these situations as a forewarning of impending death. In this case, as in others, nurses, and the hospital chaplain told AHA that they felt uncomfortable about sending such surreptitiously sampled tests to the NTU. It resembled, for them, a premature diagnosis of death. Or paraphrasing Mol’s words, an as yet inappropriate enactment of death. The patient’s condition deteriorated and the doctors decided it was time to conduct the bedside tests prescribed for diagnosing brain death. The family were asked to leave the room, as testing the responses to pain stimuli and the presence or absence of gag reflexes might, according to the doctors, be disturbing for them to witness.6 The ventilator was withdrawn for a few minutes – with a small amount of oxygen as back-up in case the patient started breathing unassisted by the ventilator. From Mol’s perspective, the bedside tests can be interpreted as the first enactment of death. They confirmed that ‘coning’ already had occurred (i.e. that the lower brain had been compressed into the cranial floor) ensuing in ‘brain death’. Based on these tests, the doctors abandoned all hope of their patient’s recovery. But the momentous change of the young man’s ontological status could neither be seen nor heard to those unfamiliar with ‘coning’. The nurse continued monitoring the now deceased blood pressure and oxygen levels as if the patient were still alive, only now, treatment consisted of maintaining his organs in case the family consented to donation. As yet, the next of kin waiting outside in the corridor were ignorant about their son and brother’s changed status. After the bedside tests had been performed, the neurosurgeon and intensivist ushered the next of kin towards a room further down the corridor to ‘discuss the situation’. From previous donation situations, AHA knew that the declaration of death was only part of the doctors’ agenda for this meeting. However, unseemly, and for the next of kin perhaps unexpected, the topic that now also needed to be broached was that of organ donation. During AHA’s fieldwork, the declaration of death and organ donation request was always done at the same meeting. A problem about combining these two messages is that the doctors risk confusing and antagonizing the next of kin. The doctors first have to dispel any hope of recovery. When they then raise the question of organ donation, this entails introducing a momentous change of perspective, often before the declaration of death has had time to sink in. The requesting is done gradually, first by asking the next of kin Some (e.g. Doran 2004a,b) advocate that the family be present during these tests, as it can help them to accept that their relative is dying or dead.

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whether they know anything about organ donation, or whether their loved one had any opinion about organ donation. Imparting these messages within the narrow time window available before the organs can no longer be used calls for considerable communicative skills. Experienced doctors know how easily despairing next of kin turn their confusion into disbelief, distrust and anger. The neurosurgeon opened the meeting by announcing that no more could be done for their son; that he was dead (second enactment of death). Explaining brain death to the bewildered next of kin constitutes a balancing act. The doctors are well aware that the only reason the deceased remains attached to the ventilator is in the hope of salvaging his or her organs, no longer to rescue the patient’s life. But this change in focus – unknown to the next of kin – needs to be communicated with finesse and not before the family have understood that a heart-beating patient can still be dead. The doctor told the parents that their son’s bodily functions had been entirely taken over by the ventilator and that he would never be able to regain consciousness. ‘Your son’s condition can be compared to an aeroplane without a pilot. A pilot is, like the brain, in charge of steering (the plane), of coordinating altitude, speed, flight path and landing. When nobody is in charge the aeroplane cannot function. It will sooner or later crash’. Less than a minute7 after having declared death, the neurosurgeon said ‘We need to discuss how to proceed’. He asked whether the parents had heard about organ donation. ‘Did your son ever express any opinion about organ donation? ‘ Pause. ‘ His organs can be used to help patients on the organ waiting list’. Another pause. ‘We are primarily interested in what your son would have wished. As he no longer can voice his opinion, your role is to consider what he would have wanted’. Silence. The disbelieving next of kin gradually realized that the neurosurgeon was seeking permission to re-use parts of their son to heal other, unknowable patients. The family were incredulous: ‘Surely there must be some misunderstanding. His skin colour is normal, his hands are still warm. If he is dead, why are you keeping him on the ventilator?’

This is the question the neurosurgeon told AHA he dreaded. He does not want to be suspected of having had any ulterior consideration than that of saving the patient’s life. Informing about unknown patients in need of an organ risks being experienced as exerting unseemly moral pressure and worse;

AHA had timed the interval between the death declaration and the question of organ donation.

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treating a patient as a means, not an end in himself. Little more was said. The comparison of their son with a pilotless aeroplane seemed to be of little relevance to the stunned next of kin. As the healthcare team left the next of kin to reflect, they said they would respect whatever conclusion the family reached, without asking for any explanation. In the ensuing hours the next of kin vacillated between sitting at their son’s bedside and wandering aimlessly up and down the ICU-corridors. By then, a nurse had dressed the night table with a white table cloth, a bunch of dried flowers (taken from a shelf in the cupboard marked ‘mors’) and lit a white candle. This subtle change of scene constituted a third enactment of death. It signalled crossing over an existential threshold; the patient was no longer in an ambiguous betwixtand-between state but irrevocably dead, in spite of maintaining so many signs of vitality and still occupying a hospital bed. The head nurse on duty that evening asked whether the family would like to speak to the hospital chaplain. At the meeting with him I heard the next of kin struggle with disbelief. The doctor had started out by declaring death, indicating absolute closure, and then immediately afterwards opened up for a kind of ‘future’ for the deceased: to become an organ donor. Was it at all conceivable for a mother to give doctors permission to cut into her son’s body, thereby violating his integrity? Was it not their responsibility as parents to protect their child? The parents were clearly attending the equivalent of a wake, seeking to defend their loved one against any form of attack in the period between death and burial. The chaplain carefully suggested that the person their son had once been was now beyond harm and pain and that they maybe did him a greater service by permitting the removal and reuse of his organs, if that was what he himself would have wanted. By consenting to donation, the parents might perhaps be fulfilling their son’s last, albeit unformulated, wish. At the next meeting with the doctors, the father spoke on behalf of the rest of the family and nodded his assent. The doctor commented, with approval, that some families find meaning in their tragedy in the knowledge that their loved one’s organs would provide a new life chance for terminally ill patients. After a short pause, the doctor went on to discuss practical matters. To the unsuspecting parents, the doctor explained that the law requires that patients whose organs are to be used must undergo a radiological imaging test (cerebral angiography ⁄ arcography) before the removal of organs becomes legal. I noticed the parent’s disbelieving stare. Did this mean that there was some doubt about their son’s death, after all? A new round of explanations ensued. Cerebral angiography was scheduled an hour hence. On the way to the X-ray room, the nurse startled AHA by 249


bending over her ‘patient’, informing him in a hushed voice that he now was on his way to a medical test. Just before the tube with contrast fluid was inserted, I heard the nurse utter reassuring words that the examination would not be painful and that he should just relax. Outside the X-ray room, the nurse explained that even though the doctor had declared the patient dead an hour ago, in organ donation situations, the declaration of death is provisional and needed to be corroborated by cerebral angiography. ‘A person’s hearing is the last sense to go. I believe it is unethical to act as if he couldn’t hear and understand what is being said in front of him. As long as he is still alive, albeit at a low ebb, it is wrong to talk about him in the past, as he still might be able to register what is being said’.

Watching and hearing the nurse speak to her patient before cerebral angiography was initially confusing for AHA. However, through Mol’s lens, angiography constituted a fourth enactment of death. Many hours later, the young man’s now organ-depleted, pale and cold body was returned to the ICU and the hospital chaplain conducted a farewell ceremony for the weeping next of kin. The fifth enactment of death. During these various enactments, the patient was neither more or less dead, but for the healthcare staff he was legally dead only after cerebral angiography results, and for the next of kin, only really dead when he was returned to the ICU, cold, pale silent and no longer ‘breathing’.

Case II The second example concerns a young man who had sustained life-threatening injuries at work. After no more could be done for the patient, his parents were asked whether they would consent to donation. As in several cases during fieldwork, the family wondered whether donation would preclude a traditional funeral. Was the church positively or negatively inclined towards donation? Should the body not be buried intact? The hospital chaplain assured the next of kin that organ donation was compatible with the Church’s principles. Sensing that they were moving in favour of donation consent, the chaplain mentioned that if the family so wished, he could inform their parish vicar about their decision, adding that sometimes the family ask the clergyman to include organ donation in the funeral oration. The parents gave their consent. Preparations for cerebral angiography went ahead. In this particular case, there still remained a trickle of blood circulating through the brain, which meant that the patient did not meet the requirements for establishing brain death. He was returned to the ICU where a new, and for the healthcare staff, highly embarrassing meeting took place. The doctors had to explain that the 250

tests were not satisfactory and that the family now faced two options: either to wait a few hours for a new cerebral angiography or to wait a few hours for the healthcare staff to detach him from the ventilator, which meant that donation could not be carried out. The parent’s responded with confusion. Could their son, after all, perhaps still feel and hear what they, his parents, said to him? Was their hard wrought decision to consent to donation a pledge which now had to be made void? Would his organs end up in the grave instead of being re-housed in the bodies of grateful patients on the organ waiting list? The parents said they preferred to wait for another angiography. By then they seemed convinced that donation represented a way of fulfilling their son’s last wishes, even if this could only be hypothesized. For them, donation constituted a way of testifying to the kind and helpful person he had been; a foreshadowing of the eulogy that would form part of the funeral. A couple of hours later, a new cerebral angiography was performed, this time showing no blood circulation. Returning from the X-ray department, the first thing the doctor did was to ceremonially shake the parents’ hands in formal condolence. Using Mol’s perspective, the doctor’s condolences can be seen as confirmation of the legal enactment of brain death. At the same time, it marked the dividing line in the doctor’s dealings with the next of kin; his now erstwhile patient would shortly be in the hands of the explanation team in the operating room. He would be returned to the ICU after organ removal for the next of kin for viewing. But more unexpected developments were to follow. It was now well past midnight. The team of surgeons from the NTU were on their way, and the family had an hour left before their loved one would be wheeled into the operating theatre. The parents sat by their son’s bedside, squeezing his still warm hands in a last hope that the doctors had been mistaken. The nurses on duty that night were somewhat taken aback when the parents suddenly asked whether a nurse could take some photographs of their son? She fetched a camera and took several pictures of the young man. The only indication that something was wrong was a bandage covering part of his head. AHA interpreted the taking of photographs as a modern equivalent of traditional a death mask, that is, a portrait the parents could look at and touch in the years ahead (Hallam and Hockey 2001). Or in Mol’s words, an enactment commemorating and visualizing their son’s last hours as an apparently still breathing individual. The value these pictures represented for the bereaved was clearly not appreciated by the healthcare staff; during AHA’s post hoc meeting with the parents, AHA discovered that they had been waiting for the pictures but hesitated contacting the hospital from a premonition that nobody knew 2012 John Wiley & Sons Ltd


anything about them anymore. When, with the parent’s permission, AHA reported back to the hospital, nobody could trace the photographs – a cause of considerable embarrassment among the ICU-staff. The film was finally located, developed and sent with sincere apologies. Before the young man was wheeled to the operating theatre that night, the hospital chaplain held a farewell prayer meeting with the family. The ceremony – resembling a blessing on the eve of a momentous journey – seemed to afford the family a modicum of reassurance. Looking back, AHA suspected that the family had not fully appreciated that their son was dead. After he had been taken from the ICU to the operating theatre, AHA heard them lament on how terrible it was that they wouldn’t be able to hold his hand as he drew his last breath. Logically, this would entail that their son’s death was caused, or in Mol’s perspective enacted by organ removal surgery. Although they trusted the doctors who had declared their son dead, they still seemed to believe that ‘real’, old-fashioned death would be accomplished in the operating theatre when the ventilator was detached. In their commonsense and traditional understanding, death was the equivalent of expiring or exhaling a last time. Several hours later, after the organs had been rinsed and packed in cooling boxes, the surgeon on duty in the accident and emergency ward was called in to close the now organ depleted body. The body was sutured with two layers of stitches, washed, bandaged and tended to in much the same way other surgery patients would have been. The dead patient’s now clearly lifeless body was transferred from the surgical bench and conveyed into a conventional hospital bed with sheet, pillow and duvet, and transported back to the ICU. The next of kin, who, in accordance with the NOROD guidelines, had been advised to view their relative after procurement surgery, were waiting. Now they beheld their son unambiguously pale, cold and dead. Shortly after he had been returned, the chaplain held a memorial prayer meeting (minnestund). The time for mourning had begun. At the time AHA had wondered why the hospital chaplain had presided over both a farewell prayer meeting, and a short memorial service. In a conversation with one of the chaplains, AHA understood that holding a memorial service for a warm and apparently still breathing ‘patient’ – even if he or she already has been declared dead – was counter intuitive, but that a farewell ceremony had been standard practice. The memorial service held in the presence of a cold, non-breathing body, helped the next of kin come to terms with reality of death. It was also an occasion for the chaplain to express words of thanks about the family’s altruism towards patients on the waiting list. 2012 John Wiley & Sons Ltd

Before leaving the ICU – and much to the astonishment of the healthcare staff – the parents asked when their son had actually died. Was it when the neurosurgeon had declared death on Friday, or had death occurred on the following day, Saturday, that is, when cerebral angiography had been performed? Was it after the first or second X-ray procedure? They needed to know what date to put in the death announcement in the local newspaper. The parents’ uncertainty about when death had ‘really’ occurred summed up the cognitive and emotional confusion they had experienced during the entire organ donation ordeal. What we can now appreciate is that in organ donation situations, the death of a patient is enacted several times, and these enactments are distributed in different locations. This is partly so as to meet the legal requirements for brain death, partly to document the difference between persistent coma and death itself and lastly, to overcome any doubts that an artificially maintained breathing patient may all the same be certified as brain dead.

NURSING DEAD PATIENTS Based on interviews and observations at the ICU, HH illustrates how acknowledging a deceased patient’s social identity in word and deed and respecting his ⁄ her zones of intimacy as if she ⁄ he were still alive represents a way of showing reverence.8 Prolonging of social identity and safeguarding personal integrity is conceived and spoken of among nurses as a ‘dignified’ and humane way of dealing with the dying and deceased. Throughout their work, even during the most technical moments of care, the ICU nurses seldom lose contact with the human aspect of the dead patient. The term ‘dead patient’ is common parlance amongst nurses and represents a central ontological mooring during their post-mortem care. As in AHA’s cases above, HH’s data also revealed that some nurses continue talking to the deceased. They for instance ‘inform’ dead patients about which step in their nursing procedure they are about to carry out, talking to them in much the same way they would have done to a sedated patient (see Lawler 1991, 188; Wolf 1991, 84; Pearson et al. 2001, 137; Lock 2002, 251; Nipe 2005). Several HH’s contribution stems from anthropological fieldwork (2003–2006) at the ICU of a Norwegian University Hospital (Hadders 2007a,b; 2009a,b). His discussion is based on tape-recorded, semi-structured interviews with 28 nurses and two physicians. The study was planned, conducted and concluded during the period 1 September 2003–1 September 2006 with the aim to explore and analyse ways of dying and death at the ICU. Research permission was granted by the Regional Ethics Committee and depended on donor families’ and healthcare staff’s informed consent. The study was accepted as HH’s PhD in 2008.

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nurses told HH that this practice helps them to sustain the relational aspect of the care rendered to their patient. Some nurses hinted to HH that speaking to the dead as if they were alive and sentient was a way of under communicating the sometimes morbid character of their work, to themselves and each other. For instance, one nurse admitted that talking to the dead patient perhaps was ‘a bit silly’, as dead people do not hear, but she did never the less. Another one said ‘I know they’re dead but I talk to them all the same’. One nurse said ‘they cannot hear but I talk a little … just as well … for my own sake … I inform them what I do … and say it is sad it had to end like this’. However, HH’s data also revealed that this practice is contested. A nurse who had previously worked at an oncology ward (where the practice of talking to the dead patient during post-mortem care is common), started to reflect on whether this practice was proper or not, but only after she had started to work at the ICU. This happened as she undertook her first post-mortem care together with a senior nurse at the ICU. When they had finished their task, the senior nurse had remarked that she thought it was somewhat strange to talk to a dead patient. This oncology nurse asked herself whether this practice, in fact, might create confusion for relatives. However, this nurse also mentioned that the relatives themselves sometimes talk to the deceased, for instance as part of the formal viewing. The oncology nurse also asked herself where the line should be drawn: ‘Should we, kind of, treat all [dead patients] as if they are living right up to when they are shrouded … or should one … now the patient is actually dead, he cannot hear or see … is it less respectful not to explain what we do [to them] when we nurse them ?’ One of the two physicians in HH’s material was adamant about not speaking to the dead. A similar stance has been suggested by various authors (Pearson et al. 2001; Doran 2004b, 91; Meyer and Bjørk 2008, 136; Ronayne 2009). In the interviews at the ICU, this physician insisted that talking about a ‘dead patient’ represents a contradiction in terms: ‘We provide therapy for living patients, not for the dead … One should go on talking to a sedated patient because he might be able to hear you. But after death has occurred, we can only talk about, not to the deceased’, even though he may appear to be still alive. When communicating with the bereaved, health personnel should therefore refer to ‘the deceased’, not to the ‘dead patient’. This physician’s claims are supported by Capron (2001). ‘Brain death’ should be avoided, as it causes confusion. But one need not go to the other extreme and apply the term ‘cadaver’. This term was often applied in publications when discussing brain death as a depersonalising marker to demar252

cate unambiguous death. However, in the minds of most healthcare workers, to employ the word ‘cadaver’ would constitute a grossly insensitive reification of a loved person (Sadala and Mendes 2000, 796–8; Day 2001; Regehr et al. 2004). This physician told HH that he routinely enacted death by expressing his condolences to relatives to demarcate death before breaching the topic of organ donation. ‘It is almost like a ‘light burial’ ’. Behind the physician’s criticism there seemed to exist an urge to root out any uncertainty about death having already occurred when the question of organ donation is raised. ‘What we professionals fear, is that the general public regards ‘brain’ death as some kind of ‘almost dead’ condition’. He underscored that unlike cardiac arrest or coma induced by drugs or hypothermia, destruction of the whole brain constitutes an irreversible condition. After the various tests have confirmed brain death, the healthcare staff’s main task changes into that of managing the deceased’s organs, defined as donor organ preservation (Meyer 2005, 160). The physician’s tidying-up project extended to the operating theatre. Talking about a patient and an operation should be avoided, as these terms can cause existential unease for healthcare personnel. Instead ‘deceased’ and ‘partial autopsy’ should be used. This terminology is also recommended in a contemporary Norwegian text book on intensive care to demarcate death at the time of organ procurement (Meyer 2005, 165). ‘Physicians and nurses should feel utterly convinced that the patient is unambiguously dead before organ procurement’ the physician added. In the course of the interviews, he gave a clear picture of the ontological politics to which he subscribed. The Dead Donor Rule was imperative for him in order to maintain public trust and bearable working conditions for healthcare personnel. Nevertheless, as a somewhat unexpected afterthought, the physician told HH that he always encourages relatives to speak to their dead relative during the final viewing. He explained his stance by saying that whereas he as a physician knew that (necro) donors are legally dead, he understood the grieving next of kin’s emotional need to speak to their now departed relative in order to pronounce some last words before the coffin was closed. ‘As a father [if my child had died], I would want to be completely certain that he [my child] would be able hear me. Primarily because I would want him to hear me. My emotions would compel me to speak with him, even if I knew, rationally, that uttering words to my child was more a way of trying to cope with my own grief’. We have seen that clear communication about when the border between life and death has been crossed is essential in the organ donation clinic. Talking to the 2012 John Wiley & Sons Ltd


deceased once brain death has been enacted should be avoided as relatives may start to wonder whether their loved one is still alive. Safeguarding the integrity and venerating the human body is a baseline for nurses’ post-mortem care, regardless of whether such respect is shown towards a present and still social person, or towards a former, absent human being now reduced to an insentient body. Nurses’ overarching concern about safeguarding their patients’ embodied integrity remains a cornerstone for patient care in general (Lawler 1991).

DISCUSSION For the next of kin, the emotional confusion caused by sudden death and the question of organ donation can probably not be avoided. In comparison, for the doctors’ and nurses’, these situations at best cohere into an organized whole as well as giving satisfaction from having indirectly helped patients on the waiting list. Mol’s perspective is perhaps most useful for the healthcare staff as a reminder of what the next of kin may experience as perplexing and inconsistent in organ donation situations. When such doubts emerge they need to be addressed. Meyer and Bjørk (2008) argue that healthcare staff’s competence would be significantly enhanced if local debriefing meetings were routinely conducted. In practice, donation cases frequently happen at night, rendering it problematic to find a time that fits in with nurses’ and doctors’ work shifts the next day. All 28 registered donor hospitals now have a physician on their staff who is paid to promote, teach and discuss donation matters as part of his or her workload. At the hospital where AHA conducted fieldwork, members of the healthcare staff have since 2003 had access to a ‘support group’ where nurses and doctors who were troubled with the way a particular situation was handled can air their doubts and pose questions. However, the ‘donor doctor’ at this hospital told AHA that few healthcare staff workers make use of this safety valve. Meyer and Bjørk recommend that diagnostics, legislation, care for the bereaved and communication should be part of regular hospital-based education programs for ICU nurses as well as for physicians (Meyer and Bjørk 2008, 138). The educational potential that lies in nurses’ and doctors’ experience of donation situations is, in Norway, maximized at bi-annual seminars where past donations are recapitulated and discussed, including an assessment of how the team members’ coordinated their different and complementary tasks. Sharing and articulating experience is increasingly seen as a way to improve teamwork and to further better understanding about why some families did not consent to donation. Donation situations depend on 2012 John Wiley & Sons Ltd

well-organized coordination between different healthcare professionals. Flexibility and an ability to alternate between being audience and player is also an advantage. This can be appreciated when nurses in charge of the next of kin at one meeting form part of the audience, for instance, when the doctor explains brain death, but in the next instance become active communication partners, in their dealings with the next of kin. Although not present in the ICU when potential organ donation is being evaluated, the anaesthetists and nurses in the operating theatre are now recognized as an integral part of the donation team. The fact that nurses and anaesthetists operate on a dead patient’s body and are left to deal with an organ-depleted body after the explanting team leaves cause emotional malaise. These healthcare personnel are now included on the list of those receiving feedback reports from the National Transplant Unit about the donated organs. In this study, we have explored different and contestable ways of enacting death, epitomized in organ donation situations. In spite of the great variety in social background and circumstances of the patients, a recurring finding was that the next of kin experienced the process of their loved one’s death as rationally bewildering and emotionally confusing. When doctors maintain that the official moment of death occurs when cerebral angiography shows cessation of circulation, this is difficult for the next of kin to fathom when they before this have heard the doctor declare death after conducting conclusive bedside tests. From the perspective of the healthcare staff, such apparently medical ‘double-talk’ appears less incomprehensible as it corresponds to the ontological politics inscribed in the official protocol governing organ donation. Applying Mol’s approach to the organ donation scene, we have shown that death is enacted differently according to whether the deceased’s organs are to be re-planted or not.

CONCLUDING REMARKS Several new laws that have been passed since the 1973 Transplantation Act, which in combination have somewhat changed the terrain. Examples are laws on Health Rights (HOD 1999a), Patient Rights (HOD 1999b) and Specialist Health Services (HOD 1999c). In addition, technological and biomedical developments and professional innovation continue to move the boundary between life and death, just as the (Beecher 1968) Harvard Ad Hoc definition of death at the time instigated a veritable sea change. We have seen how various enactments of death at the ICU at times coexist, cohere and reinforce each other, at other times clash and come into conflict. In the organ dona253


tion clinic, the different enactments of death are distributed and compartmentalized in space and time, but together amount to death of the patient ⁄ person ⁄ donor. Mol emphasizes that even if the ontology of medical practice is multiple, it is not fragmented (Mol 2002). That is, such medical practices may even be distributed in various locations, practices and times, yet all these are still ontologically connected through professional co-operation and coordination.

ACKNOWLEDGEMENT The first author is indebted to his supervisors Solrun Williksen, Lars Johan Materstvedt, Pa˚l Klepstad and the staff at the ICU at Trondheim University Hospital for support, guidance and feedback during the undertaking of his PhD study, and expresses gratitude to the nurses and physicians who agreed to be interviewed. Norwegian University of Science and Technology and Sør-Trøndelag University College generously funded part of this research.

REFERENCES Alnæs AH. 2001. Minding matter: Organ donation and medical modernity’s difficult decisions. Oslo: Department and Museum of Anthropology, Faculty of Social Sciences, University of Oslo. Beecher HK. 1968. A definition of irreversible coma. Journal of the American Medical Association 205: 337–40. Bernat JL. 2006. The whole-brain concept of death remains optimum public policy. Journal of Law, Medicine and Ethics 34: 35–43. Capron AM. 2001. Brain death: Well settled yet still unresolved. The New England Journal of Medicine 344: 1244–6. Chiong W. 2005. Brain death without definitions. Hastings Center Report 35: 20–30. Day L. 2001. How nurses shift from care of a brain-injured patient to maintenance of a brain-dead organ donor. American Journal of Critical Care 10: 306–12. Doran M. 2004a. The presence of family during brain stem death testing (part one). Intensive and Critical Care Nursing 20: 32–7. Doran M. 2004b. The presence of family during brain stem death testing (part two). Intensive and Critical Care Nursing 20: 87–92. Hadders H. 2007a. Dealing with the dead patient at the intensive care unit. Mortality 12: 207–22. Hadders H. 2007b. Relatives’ presence in connection with cardio pulmonary resuscitation and sudden death at the intensive care unit. Nursing Inquiry 14: 224–32. 254

Hadders H. 2009a. Medical practice, procedure manuals and the standardisation of hospital death. Nursing Inquiry 16: 22–32. Hadders H. 2009b. Enacting death in the intensive care unit: Medical technology and the multiple ontologies of death. Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine 13: 571–87. Hallam E and J Hockey. 2001. Death, Memory and Material Culture. Oxford: Berg. HOD. 1999a. Law on health personnel. Helse- og omsorgsdepartementet [Ministry of Health and Care]. Oslo: Medlex. HOD. 1999b. Law on patient rights. Helse- og omsorgsdepartementet [Ministry of Health and Care]. Oslo: Medlex. HOD. 1999c. Law on specialist health services. Helse- og omsorgsdepartementet [Ministry of Health and Care]. Oslo: Medlex. HOD. 2004. Provisions of the 1973 act on transplantation, hospital autopsies and the donation of bodies. Helse- og omsorgsdepartementet [Ministry of Health and Care]. Oslo: Grøndahl Dreyer; Lovdata. Latour B. 2005. Reassembling the social: An introduction to actornetwork-theory. Oxford: Oxford University Press. Law J. 1999. After ANT: Complexity, naming and topology. In Actor Network Theory and After, eds J Law and J Hassard, 1–14. Oxford: Blackwell Publishers ⁄ The Sociological Review. Law J. 2004. After method: Mess in social science research. London: Routledge. Lawler J. 1991. Behind the screens: Nursing, somology, and the problem of the body. Melbourne, FL: Churchill Livingstone. Lock M. 2002. Twice dead: Organ transplants and the reinvention of death. Berkeley, CA: University of California Press. Meyer K. 2005. Organdonasjon [Organ donation]. In Intensivsykepleie. [Intensive care nursing], eds T Gulbrandsen and DG Stubberud, 156–7. Oslo: Akribe. Meyer K and T Bjørk. 2008. Change of focus: From intensive care towards organ donation. Transplant International 21: 133–9. Ministry of Justice and Police. 1973. Act on transplantation, hospital autopsies and the donation of bodies. Oslo: Grøndahl Dreyer; Lovdata. Mol A. 1999. Ontological politics: A word and some questions. In Actor Network Theory and After, eds J Law and J Hassard, 74–89. Oxford: Blackwell Publishers ⁄ The Sociological Review. Mol A. 2002. The body multiple: Ontology in medical practice. Durham and London: Duke University Press. Nipe T. 2005. Talking to the brain-dead: Culture, ideology and nursing practice. Un-published Master thesis in Social Health at Centre for the Study of Health and Society, 2012 John Wiley & Sons Ltd


School of Population Health, Faculty of Medicine, Dentistry and Health Sciences. University of Melbourne. NOROD. 2004. Rikshospitalets protokoll for organdonasjon: En veiledning for sykehus. [Oslo University Hospital’s protocol for organ donation: A guide for hospitals]. Norsk Ra˚dgivningsgruppe for Organ donasjon (NOROD), [Norwegian Organ Donation Council]. Oslo: Local print. Pearson A, S Robertson-Malt, K Walsh and M Fitzgerald. 2001. Intensive care nurses’ experiences of caring for brain dead organ donor patients. Journal of Clinical Nursing 10: 132–9. Regehr C, M Kjerulf, SR Popova and AJ Baker. 2004. Trauma and tribulation: The experiences and attitudes of operating room nurses working with organ donors. Journal of Clinical Nursing 13: 430–7. Ronayne C. 2009. A phenomenological study to understand the experience of nurse with regard to brainstem death. Intensive and Critical Care Nursing 25: 90–8. Rubenstein A, E Cohen and E Jackson. 2006. The definition of death and the ethics of organ procurement from the deceased. President’s Council on Bioethics. Unpublished staff discussion paper, presented and


discussed at the President’s Council on Bioethics. http://www.bioethics.gov/background/rubenstein.html (accessed 5 November 2007). Sadala AM and HW Mendes. 2000. Caring for organ donors: The intensive care unit nurses’ view. Qualitative Health Research 10: 788–805. Timmermans S. 2006. Postmortem: How medical examiners explain suspicious deaths. Chicago, IL: University of Chicago Press. Truog RD. 2007. Brain death: Too flawed to endure, too ingrained to abandon. Journal of Law, Medicine and Ethics 35: 273–81. Veatch R. 1999. The conscience clause: How much individual choice in defining death can our society tolerate? In The Definition of Death. Contemporary Controversies, eds SJ Youngner, RM Arnold and R Shapiro, 137–60. Balltimore, MD: The Johns Hopkins University Press. Wolf ZR. 1991. Nurses’ experiences giving postmortem care to patients who have donated organs: A phenomenological study. Scholarly Inquiry for Nursing Practice 5: 73–87. Youngner SJ, RM Arnold and R Schapiro. 1999. The definition of death: Contemporary controversies. Baltimore, MD: Johns Hopkins.

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