Dying As a Social Relationship: a Sociological Review of Debates on the Determination of Death

Social Science & Medicine 66 (2008) 1533e1544 www.elsevier.com/locate/socscimed

Dying as a social relationship: A sociological review of debates on the determination of death

Allan Kellehear*

Department of Social & Policy Sciences, University of Bath, The Avenue, Claverton Down, Bath BA2 7AY, UK Available online 28 January 2008

Abstract

The research literature about ‘brain death’ is largely characterized by biomedical, bioethical and legal writing. This has led to overlooking wider but no less pertinent social, historical and cultural understandings about death. By ignoring the work of other social and clinical colleagues in the study of dying, the literature on the determination of death has become unnecessarily abstract and socially disconnected from parallel concerns about death and dying. This has led, and continues to lead to, incomplete sugges- tions and narrow discussions about the nature of death as well as an ongoing misunderstanding of general public and health care staff responses to brain death criteria. This paper provides a sociological outline of these problems through a review of the key literature on the determination of death. Ó 2007 Elsevier Ltd. All rights reserved.

Keywords: Brain death; Dying; Social factors; Culture; End-of-life care; Review

Introduction Resistance to the very idea of brain death, and not only simply by countries such as Japan, but also in The scientific determination of death continues to be the USA, Britain and other European nations, is con- characterized by controversy, confusion and criticism. stantly explained in terms of religious differences, igno- Much of this professional turmoil can be traced to phil- rance or a matter of conscience. During this time, there osophical and biomedical objections to the definition of has been little or no evidence of a dialogue between stu- brain death, its criteria, or tests to establish them. To dents of dying in cognate areas such as hospice, eutha- worsen matters, the dominance of philosophical per- nasia, aged care or grief studies, and those researchers spectives has emphasized asocial ideas of personhood in the determination of death field. There is minimal that do not reflect the cultural and interpersonal realities recognition too, that these problems are not simply bio- at the deathbed. Failure to accept clinical definitions of ethical or biomedical in nature but fundamentally brain death in all its different versions, by the general shaped and driven by a series of important sociological public or families, is often attributed to their ‘confu- influences. sion’ about what death actually ‘looks’ like. The aim of this review is to draw attention to this se- riously overlooked set of influences and to demonstrate that sociological perspectives about dying and the deter- * Tel.: þ44 1225 384055. mination of death are crucial, not only for understand- E-mail address: [email protected] ing current and past patterns of dissent, but also for

0277-9536/$ - see front matter Ó 2007 Elsevier Ltd. All rights reserved. doi:10.1016/j.socscimed.2007.12.023 1534 A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544 devising more inclusive health policies in the future. determining death through employment of brain death This paper is a contribution toward restoring balance criteria has grown steadily over the last few centuries. to past neurobiological and bioethical emphasis in the The first person to advocate the idea of brain death research and literature on the determination of death. I appears to be Moses Maimonides (1135e1204), who will argue that by overlooking one simple sociological theorized upon the jerking movements in decapitated fact e dying as a social relationship e we also overlook humans. He argued that these movements did not repre- the single most important reason why biomedical and sent ‘life’ or ‘centralized control’ (Laureys, 2005). philosophical formulations of brain death are incom- Later, 19th century theories about brain death were plete and therefore subject to resistance and dissent. derived from theories about intracranial pressure and In the first part of this paper, I will briefly review the its apparent causal relationship to respiratory arrest history of the debate about brain death drawing atten- (Settergren, 2003). In 1959, French neurologists tion to the diversity of their clinical, philosophical and Mollaret and Goulon identified a particularly deep and sociological objections. The second half of the paper apparently irreversible coma that they described as will provide a critical outline of the asocial image of ‘coma depasse’ (Laureys, 2005: 899). In 1968, a combi- the dying person so commonly witnessed at the core nation of developments in intensive care technology of contemporary determination of death discussions and the rapid rise and interest in human organ transplant and research. I will demonstrate the sociological basis surgery prompted the Harvard medical school to con- for so-called ‘public confusion’ toward concepts of vene an ad hoc committee to develop a new criteria brain death, drawing attention to the sharp contrast for death that matched the complexity and biological between publicly held social ideas about dying and implications of those developments (Giacomini, the loner view of dying so commonly assumed by main- 1997). These Harvard deliberations were historically stream academic literature on the determination of significant because the formulation of brain death de- death. veloped by their ad hoc committee established the basic criteria from which all subsequent revisions and debates Determining death: a brief history have derived. Since that time there have been other legislative and For most of human history, determining death for hu- professional changes that have advocated one of two man beings was no different from determining death in definitions of brain death. In the USA, the President’s animals e a living thing fell down and did not move Commission Report (1981) on ‘Defining Death’ and again. The differences between the moment of insensi- the Uniform Determination of Death Act settled on bility and the moment of death blurred because determi- a ‘whole brain’ definition of death (Truog & Fletcher, nation was based on observed behaviour (slacken 1990). In the UK, the Conference of Medical Royal mouth, movement cessation, etc.) and not an assess- Colleges and their Faculties settled on a ‘brain stem’ ment of physiological states (Knudsen, 2005). After definition of death (Sundin-Huard & Fahy, 2004). a person ‘fell down’ death was determined gradually Over 80 countries have now adopted one or the other (Lock, 1996: 579), observers looking for tell-tale signs of these definitions of brain death (Bernat, 2005b). such as rigor mortis (stiffening of the body), livor mortis The clinical pathway to determination of brain death (discolouring of the body) or algor mortis (changes to begins with a state of coma. Depending on the cause of the eyes). Eventually putrefaction or the invasion of the coma and the extent of brain damage patients may maggots occurred (Gorman, 1985). develop locked-in syndrome, a vegetative state, chronic In recent times, cardiovascular failure and cessation coma or brain death (Laureys, Owen, & Schiff, 2004). of breathing was judged equally reliable and a quicker Brain damage begins a few minutes after cessation of criteria for adjudicating about the onset of death. The cerebral blood flow (see Bernat, 2004: 163) with global older signs were more time-consuming and less than destruction of brain cells after 20e30 min. Brain cell pleasant for family members to watch. Until the death leads to diffuse cerebral oedema with a resultant 1960s, observations of cessation of cardiovascular and increase in intracranial volume (and therefore pressure). respiratory functions were the main way to diagnose As pressure builds in the rigid skull vault, intracranial death (Waisel & Truog, 1997: 683) and remain largely pressure exceeds the pressure of blood flowing to the the cardinal signs even today outside hospital situations brain and circulation ceases. The contents of the brain (Crimmins, 1993; Knudsen, 2005: 43; Poppe & then start to partially herniate into the brain stem. Bottinger, 2006; Robinson, Murphy, & Jacobs, 2003). During these physiological changes, further changes Despite these long-standing criteria, the interest in at the cellular and molecular level occur (in the rostral A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544 1535 ventrolateral medulla) that create a deteriorating motives for brain-based determinations of death (Bos, conflict between ‘pro-life’ and ‘pro-death’ neural pro- 2005; Doig & Rocker, 2003; Truog, 1997). Against grams, with ‘pro-death’ programs becoming dominant this view, Diamond (1998) rejects any suggestion that (Chan, Chang, & Chan, 2005). These processes in their support for concepts of brain death are a result of a con- turn accelerate a programmed cell death both as a re- spiracy of ‘body-snatchers’, ‘grave robbers’ and trans- sponse to interruption of vital metabolic nutrients and plant lobbies. However Giacomini (1997),inan vicariously from stress (Vaux, 2002; Vaux & extended document analysis of the 1968 files of the Har- Korsmeyer, 1999). ‘Whole brain’ death originally in- vard ad hoc committee, has persuasively demonstrated cluded the cerebral hemispheres, brain stem, cerebel- the powerful influence exerted by the transplant lobbies lum, and spinal cord, but the spinal cord was dropped within the medical community at that time. from the definition when it was discovered that most ‘dead’ people retained or regained reflexes from this Clinical, philosophical and sociological objections area after a short time (Truog & Fletcher, 1990: 204). Determining whole brain death or brain stem death During the 40 years or so since the deliberations of follows the same clinical principles: assessment of state the Harvard committee, objections to the concept of of coma, establishment of sustained apnea, and assess- brain death came in thick and fast with no recent indi- ment of brain stem reflexes (Plum, 1999). Confirmatory cation of a slow down (see Machado & Shewmon, tests are also helpful. These tests include EEG [record- 2004; Youngner, Arnold, & Schapiro, 1999). Some au- ing of the usual spontaneous electrical signals of the thors have argued that organic definitions of brain death brain], cerebral angiography [injecting contrast dye to will never replace cultural and social definitions of display cerebral blood flow], transcranial Doppler ultra- death (Gervais, 1989; Jones, 1998; Sass, 1992), and be- sonography [ultrasound imaging], somatosensory sides, consciousness cannot be checked by any medical evoked potentials [recording of ‘evoked’ or ‘stimulated’ test so the diagnosis of brain death remains an unproved signals in a brain] and scintigraphy [nuclear imaging] hypothesis (Karakatsanis & Tsanakas, 2002: 140). (Sundin-Huard & Fahy, 2004). The general criteria for Creating a sharp division between life and death has death are irreversible cessation of circulation and respi- also been argued to be artificial since no such distinc- ration or irreversible brain function (whole brain, that tion actually exists in nature itself (Halevy & Brody, is, cerebral hemispheres and brain stem; or brain stem 1993). alone). These criteria are not reliable in the newborn Bernat (2004) and Laureys (2005) assert their dis- period (Diamond, 1998). taste for the phrase ‘brain death’ on the grounds that There is still a wide variability in the brain death cri- it implies that there are other kinds of death or that it teria that is academically advocated around the world is only the brain that is dead in these cases. Bernat and these include the whole central nervous system, (2004: 370) further asserts that death is ‘fundamentally’ whole brain, brain stem, and the neocortical area/cere- a biological phenomenon, all other uses being merely bral hemisphere (higher brain) (Facco & Machado, ‘metaphorical’. People ‘must be’ dead or alive because 2004). Initially, the development of intensive care tech- no-one can reside in both. Their assertions fly in the face nology led to an increase in survival of acute brain dam- of a diversity of findings about both biological AND aged patients (Laureys et al., 2004) but the incidence of social understandings about death. these kinds of patients is decreasing or stabilizing due to For example, many authors have questioned the advances in neurocritical care and falling incidence of veracity of brain death even when the criteria have all road accidents in the developed world (Doig & Rocker, been met. The question, ‘is the brain really dead?’, 2003). seems to have plenty of evidence for a decisive ‘no’ There has been significant debate about why brain (Banasiak & Lister, 2003; Karakatsanis & Tsanakas, death was chosen as the main criteria for death itself. 2002; Truog, 1997; Waisel & Truog, 1997; Zamperetti, These reasons include a desire to relieve financial costs Bellomo, Defanti, & Latronico, 2004). The work of to families (Schlotzhauer & Liang, 2002), the social Vaux (2002) and Vaux and Korsmeyer (1999) ably dem- pressure to bring psychological relief to families of onstrates the co-existence of both live and dead and liv- the sick, freeing up beds or respirators in intensive ing and dying cells in all multi-cell organisms including care units (ICU) (Pernick, 1999), and removing grounds humans. Furthermore, Waisel and Truog (1997: 684) for objections to organ harvesting (Karakatsanis & point out that many so-called brain dead patients are Tsanakas, 2002). The increasing demand for organs capable of reproduction, a criterion that many biologists has been regularly implicated in discussions about would regard as the ‘‘sine qua non of life’’. 1536 A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

Several researchers have observed how both health tests themselves are not entirely compatible with those care workers and families hold ideas about life and death criteria (Waisel & Truog, 1997: 684). Tests for brain in co-existent and situationally contingent ways death have been subject to equal criticism and scepti- (Kaufman, 2005; Lock, 1996; Sundin-Huard & Fahy, cism. As Bernat (2004: 161) reminds us, making the 2004; Veatch, 2005). This complements the very long- claim of irreversibility of brain death is one thing but standing work by medical and social science colleagues, proving it is quite another. The tests for brain death outside the determination of death field, that death and are about as good as the operators in charge of the tests dying are viewed as social and not simply biological ex- and the people interpreting them (Conrad & Sinha, periences (see Blauner, 1966; Cassell, 1974; Charmaz, 2003; Young & Lee, 2004). 1980; Guthrie, 1971; Hartland, 1954; Kalish, 1968; Tests in cerebral angiography are invasive and tech- Leming, Vernon, & Gray, 1977; Michalowski, 1976; nically difficult to perform (Young & Lee, 2004: 503) Vernon, 1970; Vollman, Ganzert, Picher, & Williams, and may have deleterious impacts on other clinical 1971). Kalish (1968), for example, has argued that con- signs (Sundin-Huard & Fahy, 2004: 69). Sonography cepts of organic, clinical, and social perceptions of death and CT scans (three dimensional X-rays) also have ma- are commonly fluid ideas and may co-exist and change jor problems with false positives, and MRIs (magnetic for carers and the dying person. Cassell (1974) has or radio wave scans) are insufficient tests on their own argued that both death and dying e for clinical staff and (Young & Lee, 2004: 503). EEGs cannot diagnose brain families e are not simply viewed as bodily processes death though they may help confirm it (Moshe, 1989; alone but are personal and social experiences. Categories Schneider, 1989) and anyway do not supply information of‘death’ or‘dying’are not so simply characterized inreal about brain stem function (Facco & Machado, 2004). life situations as ‘living’ or ‘dead’ or as ‘metaphorical’. Scintigraphy e the use of a nuclear tracer chemical to Other objections include the tendency for absence of assess blood flow e is apparently an excellent test, evidence about consciousness to be construed as evi- but much depends on how well the test is actually per- dence of absence of consciousness (Diamond, 1998); formed. Therefore, given this rather common problem, the tendency for brain shock (ischaemia penumbria) even this test can only provide conditional support to mimic brain death and obscure possible recovery rather than replace clinical assessment (Conrad & (Sundin-Huard & Fahy, 2004); and vague and imprecise Sinha, 2003: 313; Laureys et al., 2004: 537, 543). use of the concept overall (Shewmon, Capron, Peacokk, This is an ironic, final observation given that the tests & Schulman, 1989; Truog & Fletcher, 1990). Many are frequently looked for as confirmatory of the clinical others have also questioned the problem with phrases assessments and not the reverse. and terms such as ‘futility of treatment’ or ‘irreversibil- In concluding this summary of objections to the ity’ of brain function. These have been questioned con- concept of brain death it should also be observed that ceptually (Bernat, 2005a; Cohen-Almagor, 2000; Cole, regular reviews of the recent debate about the determi- 1992) and clinically and statistically (Shewmon, 1987). nation of death have been singularly incestuous in aca- Finally, there has been widespread concern about demic terms. In other words, most of the deliberations how well understood the concept is among clinicians, about brain death have been relatively closed conversa- including those who work in transplantation and inten- tions between medical, philosophical and legal commu- sive care (Conrad & Sinha, 2003; Winkler & Weisbard, nities and seldom ones that include the social sciences. 1989; Youngner, Landfield, Coulton, Juknialis, & Leary, How the determination of death by the medical or legal 1989), not to mention that many places do not have ex- profession is itself a social and cultural activity is rarely perienced neurologists available to help with any of this acknowledged. Important social studies of dying have uncertainty (Bernat, 2005b). In some developing coun- not been consulted to understand congruence or disso- tries, the number of neurologists per capita of population nance between biomedical and social ideas of death is estimated at one in three million people (Baumgartner and dying. Why such definitions are resisted or & Gerstenbrand, 2002). There are further concerns, in supported by wider communities has witnessed few more affluent countries, about the wide variation in ex- attempts (see Pernick, 1996, 1999; Veatch & Tai, perience and qualifications of doctors involved in brain 1980, for important exceptions) to check and examine death determination (Sundin-Huard & Fahy, 2004: 69). the parallel history of how understandings of death And the problems do not stop here. Although accord- have changed or evolved in human cultures in general. ing to Gervais (1989: 9) we ‘normally’ proceed from Some authors have argued that the early Harvard theory to criteria to tests, not only have we got this pro- committee and President’s Commission displayed a dis- cess out of order by beginning with criteria but also the trust of non-medical, outside opinion about A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544 1537 determination of death, especially suspicion of those further demonstrated by an examination of how the de- from law, philosophy and ‘thanatology’ (Pernick, bate about determination of death persistently views the 1999:13e18). However, it is also true that seminal his- dying person e not as a social being e but rather as tories about our changing understandings of death by a lone and psychologically isolated entity. the French historian Philippe Aries (1974, 1975, 1981) were too late for the Harvard ad hoc committee The dying person as loner (1968) (but not for the 1981 President’s Commission). In the President’s Commission (1981) report only two On rare occasions it is possible to read authors in the historical references were noted by the commission e determination of death literature that accept that defini- Michel Vovelle’s (1980) article on the ‘rediscovery of tions of death must be viewed not only philosophically death since 1960’ and a fictional reference to Edgar and biologically but also as a social and cultural matter Allan Poe’s ‘Fall of the House of Usher’ (President’s (Jones, 1998; Veatch, 2005). However in other litera- Commission, 1981: 4, 82). On the other hand, other ture, more often than not, when the definition of death important related work did exist at that time, and was is debated in these social and cultural terms it is in ignored, and unfortunately these did have important his- relation to discussions about foreign cultures, particu- torical bearing for that committee’s work (for examples, larly the Japanese and their long resistance to concepts Borkenau, 1965; Freud, 1915; Moore, 1946; Sudnow, of brain death (Bowman & Richard, 2003; Brannigan, 1967; Toynbee, 1968; Van Gennep, 1908/1969; 1992; Doig & Rocker, 2003; Kimura, 1991; Kita Williams, 1966). et al., 2000). Williams (1966), for example, surveyed 30 years of With the exception of some Christian Fundamental- psychological abstracts to assess changing attitudes to ists (Campbell, 1999) and Jewish groups (Rosner, death during this period, primarily in the USA. Sudnow 1999), Western ideas about death are assumed to be (1967) studied 200 hospital deaths, most of them coma- less resistant to medical definitions of death and that tose before their death, and made careful observations the general public is more willing to accept this kind of staff reactions. He argued that social meanings of of leadership. In this way, dissent or resistance is attrib- death are drawn from particular professional practices uted to ‘religious or ethnic difference’ and not to a wider of a situation. Van Gennep (1908/1969) is a classic and deeper schism in public understanding between the anthropological work that provides important insights nature of death and the end of identity. Dissent or into how dying and death is commonly divided up by resistance is too commonly localised in minority or for- onlookers into social stages of transition. This process eign groups. Indeed, the (US) President’s Commission rarely results in an idea of death as annihilation but Report of 1981, entitled ‘‘Defining Death’’, indicated rather transformation e a crucial insight in explaining that it would be a definition identified by medical and why modern peoples might not easily go along with legal institutions and their professions and not individ- a definition of death they cannot actually see for them- uals (Gervais, 1989). selves. Had even the most basic findings and insights of Recently, Laureys (2005) and Machado and Shew- these early works been highlighted or incorporated into mon (2004) conducted reviews of the determination of deliberations about brain death in the late 1960s both in- death debates and claimed a broad ambit for their re- terpretations of staff and family behaviour and/or the views but this turned out to be limited to medical, phil- policy recommendations might have looked substan- osophical, legal and ethical issues e the same narrow tially different. factors considered important by the Harvard ad hoc The concept of brain death has suffered a litany of committee 37 years earlier (Ad hoc committee, 1968: clinical and philosophical objections but these objec- 337). Unfortunately then as now, there is no mention tions themselves have overlooked a broader, and argu- of the social and cultural factors in America or else- ably more important, epistemological problem with where that are essential to a national understanding, the ascendant definition of brain death. Definitions of less acceptance, of brain death criteria. Furthermore, brain death have ignored the historical and sociological Laureys (2005: 907) concludes, rather unsurprisingly basis of human understanding of death itself. By ignor- that, after all, death is a biological phenomenon. ing the parallel literature on the history of death and dy- Lizza (1993, 1999), an advocate for the ‘higher ing, and sociological studies of how death and dying is brain’ definition of death, argues that ‘death’ of the commonly perceived in social settings, determination human being should really be viewed, not purely in of death literature has become idiosyncratically techni- biological terms, but in terms of the criteria we create cal and de-contextual. The evidence for this problem is for what it means to be human. In an early paper, Lizza 1538 A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

(1993) argued that all philosophers agree on the neces- ‘‘In ‘the ordinary way of speaking’, ‘Paul Brophy’ sary conditions for what being a person means. It tran- (a fictitious example) refers to the person and the spires that, rather unsurprisingly for philosophy and human being. However, after Brophy lost higher philosophers, ‘being human’ means a capacity to think. brain functions, ‘Paul Brophy’ no longer refers to As the sociologist C. Wright Mills (1959: 19) remarked ‘Paul Brophy’, the person, since Paul Brophy, the when referring to the epistemological bias in different person, no longer exists. What lies in the hospital disciplines, ‘‘every cobbler thinks leather is the only bed, what we refer to by Paul Brophy is only Paul thing’’. Brophy the human being’’. Personhood, according to Lizza (1999: 441, 442), Unsurprisingly, as a holder of this above view, Lizza may express itself in three possible ways. First, a person (1993: 358) is somewhat bemused at the fact that the may be a member of a species (whether dead or alive) majority of people and family remain emotionally com- such as the human race. Secondly, a person may be mitted to people in a persistent vegetative state (PVS). psychological or characterological; that is, a presence Yet, Lizza displays no subsequent awareness that the behind the organic/biological appearance. Finally, a per- asocial, academic view of personhood that he rehearses son may be a unique personality. The ‘philosophical’ may be the main obstacle in his own understanding of problem for Lizza is which of these categories of expla- bedside behaviour toward PVS patients. nation best accounts for what we want to say about, for This idea that a person is a lone quality separate for examples, death, permanent vegetative states, or anen- the relationships that create it, sustain it, and give it cephalics. There are two obvious social problems with meanings, is widespread in the determination of death these clean categories of ‘personhood’. literature. Diamond (1998: 74) writes poetically about First, many people hold these categories simulta- determining death as if this has nothing to do with social neously and changeably. People become attached to relationships and instead draws from medieval religious others (both living and inert objects) because of their imagery that again focuses entirely on the lone individ- social relationship to those persons or objects. The ual; ‘‘ What is being attempted by all conscientious idea of ‘personality’ or the general character behind attending physicians is to know the unknowable, that things as they appear are of secondary importance to is, the point at which the soul leaves the body’’. the way in which others relate to that person or object. Settergren (2003) quoting from Lachs (1988: 250, Person is not simply a ‘being’ but a ‘property or qual- 251) continues this eulogy to the socially unconnected ity’ given/imposed on someone or something by others. individual: To employ a philosophical term, person is not an ‘es- sentialist’ category for most people (a quality in and ‘‘When we unalterably lose the ability to will and of itself divorced from the rest of the world) but one to do, to think and to hope, to feel and to love, we born from, and given meaning by, a perceived history have ceased existence as human beings. The only of social reciprocity. Identity is created in the minds humane course then is to declare us dead and to of others by a history of relationships to persons or treat us accordingly..once the human person is things. gone, in the faltering body there is no-one there’’. Secondly, technical definitions of personhood or brain death, if not inclusive of the people for whom In this above view, human beings are NOT reciprocal it is designed (that is, ordinary everyday people), are beings, not people who share a common will and iden- merely academic categories that (1) are not likely to tity with family and friends; acting and hoping together, adequately explain death for people who are not not only just giving but also receiving affirmation, feel- involved in their formulation; and (2) are even less ings and love from others. likely to explain attachment for most people e an Once again, many of these recent views from medi- important social factor in understanding family and cine, bioethics and philosophy in general have emerged staff resistance to a diagnosis of brain death. In other because they consistently fail to engage with parallel words, definitions of personhood that emphasize social and medical sciences discussions and data about a lone and highly individualized view of dying as the social nature of dying that are cognate to the deter- merely ‘thinking’ or ‘personality’ fail to understand mination of death literature. The past seminal work of dying as a social relationship. Not understanding the sociologists studying death and dying like Blauner reciprocity inherent in both personhood and attach- (1966), Glaser and Strauss (1965, 1968, 1971) or Char- ment leads Lizza (1993: 361) to some ironically maz (1980) or physicians Hinton (1967), Weisman impersonal conclusions: (1972) or Witzel (1975) are no-where cited or integrated A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544 1539 into an understanding of the person-near-death in deter- biological, the characteristics of both owing much to mination of death literature. More recent sociological social, religious and ethical values. This echoed the ear- and clinical work about dying from Davies (1997), lier views of both Sass (1992) and Veatch (1993) who Kellehear (1990), Lawton (2000), McNamara (2001), argued that definitional issues about death will not settle Seale (1998),orYoung and Cullen (1996), to name the cultural ones. Zamperetti et al. (2004) in their re- only a few studies and reviews, make no appearance view of the literature flatly declare a need for a more in the discussions about how people understand death pragmatic social approach to determination of death. and come to define it for themselves or others. They argue that after 35 years we need to acknowledge Recently, Kaufman (2005) has produced a lengthy that the biological evidence for brain death is always and nuanced ethnographic study of how hospital treat- equivocal and advocates the need for a name change ments are interpreted and employed by those at the bed- from ‘brain death’ to ‘Irreversible Apnoeic Coma’. side, for family and staff, and this includes issues of life This name change focuses the clinical and family dis- support. Kellehear (2007a) has recently published cussion on the likelihood of recovery and not arguments a social history of dying showing the symbiotic rela- about the nature of death itself. It is also easier to ex- tionship between dying, death and community. This his- plain to the public because of this simplification and torical sociology shows how the concepts of ‘dying’ and leaves more scope for involvement and participation ‘death’ have exchanged places several times in human of society in general and families, in particular. history and how, contrary to some bioethical thinking Sassower and Grodin (1986), in a paper that comes (Veatch, 2005: 360e362), life and death are rarely closest to recognition of the crucial importance of dying seen as opposites or absolutes. It remains to be seen as a social relationship, argue that it is ‘meaningless’ to whether these recent studies enjoy any more success provide an answer to the question, ‘‘Is the patient in restoring a sociological balance to the loner view of dead?’’ outside a specific context. We need to know dying than the equivalent but unused studies of the who is asking the question and for what purpose and 1960s and 1970s. how certain you want to be about the answer. In other parts of the literature, often not citing this more concep- Dying as a social relationship tual material, exist support for these ideas from more empirical and clinically oriented authors. Not all philosophical commentary has eschewed Robinson et al. (2003) conducted a survey of deter- social concepts and arguments in discussions about de- mination of death by medical transport teams in the termination of death. However, there are two problems USA. With a 57% response rate from all available work- with even this literature. First, the number of authors ing teams in the USA (N ¼ 190) they discovered that the who attempt to argue the importance of social factors key criteria for determination of death was simply unre- in the determination of death are very modest. Sec- sponsiveness to advanced cardiac support. But more ondly, among those who do advance these insights, interesting is their finding that the key reason for there is an unfortunate division between those who as- NOT pronouncing or presuming death in their patients sert the need for more social understandings about death was ‘political reasons’ (71%). These political reasons and those others who provide us with empirical indica- included the ground crew’s level of comfort, the flight tors of this reality. crew’s level of comfort, involvement in a crime scene, Among the theory-minded writers, Cohen-Almagor involvement of law enforcement officers, involvement (2000: 267) argues that ‘people are social beings’. Med- of a child, and involvement in a humanitarian mission ical language, such as ‘vegetative’ states, ‘irreversibil- of some sort. ity’ or ‘futility’, serve physician interests more than Against these kinds of circumstance-led determina- patients. He emphasizes what he calls the ‘reality-build- tions, where the decision to presume death, or not to ing’ nature of language and is not surprised at why presume it, are mediated by the relationships between many families do not share the language (and hence ‘re- the patient and those others around him/her, are the pre- ality’) of brain death, coma, or persistent vegetative vailing social ideas about reversibility of death. Cole state. (1992) argues that brain death is counterintuitive be- Jones (1998) wrote an intriguing paper comparing cause it runs counter to people’s experience of medical brain birth with brain death. Although he is quick to rescue in the media e TV, films or newspapers. Of point out that concepts of development and degenera- course, viewers commonly see ‘flat line’ images as sug- tion are NOT interchangeable he is equally adamant gestive of death but just as commonly (and perhaps that both brain birth and death are only partly more importantly) such images are demonstrated to be 1540 A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544 reversible. Reversibility is not only witnessed in scenes relationships continue to evolve at the point of death of medical resuscitation but also the rebuilding of other (see for examples, Hartland, 1954; Hocart, 1953; Ho- seemingly destroyed objects and organizations such as warth, 2000; Kellehear, 2007b; Palgi & Abramovitch, engines, cities or houses. The very idea of irreversibility 1984; Pardi, 1977; Riley, 1983). Relationships evolve is both ahistorical and inconsistent with social experi- in memorial practices in the home, roadside vigils at ence. According to Cole, it simply doesn’t ‘make the place of death, or even in traditional graveyard vis- sense’. itation where ‘talking’ with one’s dead is historically The experience of medical staff and families work- and sociologically widespread. Furthermore, contem- ing with ‘brain dead’ patients actually supports e not porary people widely report ‘interactions’ with their undermines e this sense of continuity. Brain dead dead in visions of the bereaved, dreams, seánces, patients look alive e they are pink and breathing (Truog consultation with mediums, or psychomanteums (see & Fletcher, 1990); they sometimes respond to surgical Howarth, 2000; Kellehear, 2007b; Picardie, 2000 for incision with elevated blood pressure and respiration fuller details and examples). Such ‘interactions’ with (Karakatsanis & Tsanakas, 2002: 129); they are capable the dead are believed to be ‘reciprocal’. This broader of reproduction (Waisel & Truog, 1997); they develop human context of dying and death as ongoing social re- bedsores and pneumonia, something that cadavers don’t lationships mean that ‘determination’ of death is more do (Sundin-Huard & Fahy, 2004: 66); and they move in ‘determination’ of particular social and moral functions their beds, mimicking restlessness, and grasping at during bodily decline (Miles, 1999: 313). deliberate or accidental stimuli (Turmel, Roux, & Therefore, the emphasis cannot be on death e as we Bojanowski, 1991). This is not ‘confusion’, ‘misappre- have seen, an inseparable symbiotic relationship be- hension’ or ‘misconceptions’ by the general public tween biology and culture e but on the irreversibility about those who are brain dead (Laureys, 2005: 899; of biologic, social and financial (with obvious legal Lizza, 1993; Siminoff & Bloch, 1999: 187). By most ramifications) decline. Since ‘irreversibility’ can only social criteria, the brain dead do appear alive. ever be subject to mere and fallible assessment, the le- Moreover, many of the brain dead resemble those gal and social challenge before us is not one of consent asleep, a more familiar experience that often attracts but consensus. This brings us firmly into the world of similar attentions and supports (Aubert & White, advanced directives, participatory medical decision- 1959). People who sleep often require bedding and fa- making, and civic law. These are debates about vourable environmental conditions, especially protec- citizenship e legal and social discourses about rights, tion from unnecessary disturbances. Furthermore, entitlements and obligations e not simply or solely people who are ill and sleeping commonly require or at- discussions about biology or bioethics. tract unobtrusive checking or monitoring. These are not Death is not decided by appeals to biology but by the needs of corpses. Little wonder there is a widespread a social mix of medical, legal and family consensus. desire by carers of the unconscious to support them, in As a spouse of someone with severe dementia once re- spite of whatever abstract medical reasons are offered marked: ‘‘That’s why I’m looking for a nursing home for the poor-responsiveness of their charges. Indeed, for her. I loved her dearly but she’s just not Mary ‘wonder’ is only possible if somehow dying is NOT anymore. No matter how hard I try, I can’t get myself viewed as a social relationship but merely as some ab- to believe that she’s there anymore’’ (Gubrium, 2005: stract technical notion divorced from the everyday 314). People stay when their loved ones appear dead; world of social life and its principles of interaction, others leave when those loved ones appear fit and alive reciprocity and meaning-making. but no longer reciprocate in recognizable ways. It is the And even if death was declared and agreed by all e strength of bonding, opportunities for ongoing reciproc- say, with widely observed onset of rigor mortis or even ity of the relationship, and the future sustainability of later with onset of putrefaction e this rarely ends a so- both, that are crucial for determining whether a relation- cial relationship. In other words, it is not only dying that ship is finished and moving into a new phase, or whether is a social relationship but also death. It is NOT the case it is possible and desirable to hold onto the old one. that death kills identity whatever legal, financial and Medical and ethical information is necessary and moral changes are prompted by these bodily changes important, but commonly, to the surprise and chagrin (Veatch, 2005). Both the social commitments and emo- of some, not decisive. That is often because the determi- tional attachments rarely evaporate at death. nation of death has historically been based on commu- Instead, as a host of social and anthropological liter- nity criteria of death. You are dead when WE say so, and ature on death and dying ably demonstrates, not simply when SOME of us say so, or even when your A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544 1541 doctor says so (Lock, 1996: 575). In other words, any sociological ways. However, some of the problem here criteria for death must draw on, or consult with wider must also be attributed to the apparent lack of interest or cultural sources and ideas than merely those from the willingness by sociology and anthropology to enter professions. Ignoring this fact about dying as a social debates that may appear to them to be esoteric to neurol- relationship will indeed bring physicians, inevitably, ogy and ontology. Perhaps this is indicative on the predictably and unnecessarily, into conflict with fami- ongoing ambivalence and tension between the social lies of comatose patients (Bernat, 2005a). sciences and medicine in matters to do with the body. But whatever causes may be implicated in this bias Conclusion toward favouring psychobiological structures over social structures we can say that this leads to one final This review has made several sociological observa- observation. tions about past and recent literature on the determina- Debates about the determination of death have en- tion of death. First, much of that research and couraged an academic climate conducive to uncritical literature is ahistorical. This has meant that research acceptance of biological criteria for death with an un- into concepts of death, and experiences of dying, der-recognition of the crucial role of the social criteria have not been placed in a wider context of changing for death. The reluctance to view death in both biolog- attitudes and behaviour. Surveys of attitudes or knowl- ical and social terms constitutes the single most impor- edge about ‘brain death’ tend to assess people’s under- tant barrier to the general public’s confidence in these standing about death from the standpoint of the scientific, legal and ethical deliberations. medical criteria for death. The identification of alter- For future research, this means a need for more native, but wider sources of understanding about death empirical work that fosters collaboration or dialogue and dying, located in their biographies or communi- with colleagues in the social sciences, especially in ties, is not an aim of much of this research (see for the comparative disciplines such as sociology and an- example, Siminoff & Bloch, 1999). thropology. Literature reviews will continue to cover Secondly, omission of an historical dimension into biomedical and philosophical matters but they need death and dying has also led to a related inattention to to integrate the related clinical, behavioural and social the sociological and anthropological research into the research into death and dying in areas cognate, but everyday assumptions and knowledge that people use directly relevant, to concerns about the determination to construct their understandings of death and dying. of death. For future policy development, it will be Research into social attachment and disengagement important to include the communities that are directly (of staff, families or communities) toward the dead or affected by these concepts including other health care dying person needs to be incorporated in all new re- colleagues who must address the complexities of views of the literature as well as empirical work on brain death with little or no neurological specialist the determination of death. support. Thirdly, much of the research about the determina- Awide remit for the determination of death is crucial tion of death has displayed an over-reliance on psycho- to this field because the problem of death is not only logical and philosophical perspectives. While it is simply a technical problem of the brain and its workings certainly true that ‘cobblers’ such as sociologists are but also about how experiences of mortality are medi- no less likely than philosophers to commend their ated by social understandings of death and dying. As perspectives to any research area it is, nevertheless, in all sociological attempts to grapple with the human true e in language, theory and methodology e that tra- verities (Mills, 1959), including death, this means un- ditional work in the determination of death has been derstanding death and dying at the place where biology lop-sided. The dominant picture of dying that has and biography meet at their intersections with society emerged emphasizes cognition, will and consciousness and history. over the social basis of attachment, meaning-making and identity. 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