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 suggestions 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.
2007 Elsevier Ltd. All rights reserved.
Keywords: Brain death; Dying; Social factors; Culture; End-of-life care; Review

Introduction
The scientific determination of death continues to be
characterized by controversy, confusion and criticism.
Much of this professional turmoil can be traced to philosophical and biomedical objections to the definition of
brain death, its criteria, or tests to establish them. To
worsen matters, the dominance of philosophical perspectives has emphasized asocial ideas of personhood
that do not reflect the cultural and interpersonal realities
at the deathbed. Failure to accept clinical definitions of
brain death in all its different versions, by the general
public or families, is often attributed to their confusion about what death actually looks like.

* Tel.: 44 1225 384055.

E-mail address: a.kellehear@bath.ac.uk
0277-9536/$ - see front matter 2007 Elsevier Ltd. All rights reserved.
doi:10.1016/j.socscimed.2007.12.023

Resistance to the very idea of brain death, and not

only simply by countries such as Japan, but also in
the USA, Britain and other European nations, is constantly explained in terms of religious differences, ignorance or a matter of conscience. During this time, there
has been little or no evidence of a dialogue between students of dying in cognate areas such as hospice, euthanasia, aged care or grief studies, and those researchers
in the determination of death field. There is minimal
recognition too, that these problems are not simply bioethical or biomedical in nature but fundamentally
shaped and driven by a series of important sociological
influences.
The aim of this review is to draw attention to this seriously overlooked set of influences and to demonstrate
that sociological perspectives about dying and the determination of death are crucial, not only for understanding current and past patterns of dissent, but also for

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A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

devising more inclusive health policies in the future.

This paper is a contribution toward restoring balance
to past neurobiological and bioethical emphasis in the
research and literature on the determination of death. I
will argue that by overlooking one simple sociological
fact e dying as a social relationship e we also overlook
the single most important reason why biomedical and
philosophical formulations of brain death are incomplete and therefore subject to resistance and dissent.
In the first part of this paper, I will briefly review the
history of the debate about brain death drawing attention to the diversity of their clinical, philosophical and
sociological objections. The second half of the paper
will provide a critical outline of the asocial image of
the dying person so commonly witnessed at the core
of contemporary determination of death discussions
and research. I will demonstrate the sociological basis
for so-called public confusion toward concepts of
brain death, drawing attention to the sharp contrast
between publicly held social ideas about dying and
the loner view of dying so commonly assumed by mainstream academic literature on the determination of
death.
Determining death: a brief history
For most of human history, determining death for human beings was no different from determining death in
animals e a living thing fell down and did not move
again. The differences between the moment of insensibility and the moment of death blurred because determination was based on observed behaviour (slacken
mouth, movement cessation, etc.) and not an assessment of physiological states (Knudsen, 2005). After
a person fell down death was determined gradually
(Lock, 1996: 579), observers looking for tell-tale signs
such as rigor mortis (stiffening of the body), livor mortis
(discolouring of the body) or algor mortis (changes to
the eyes). Eventually putrefaction or the invasion of
maggots occurred (Gorman, 1985).
In recent times, cardiovascular failure and cessation
of breathing was judged equally reliable and a quicker
criteria for adjudicating about the onset of death. The
older signs were more time-consuming and less than
pleasant for family members to watch. Until the
1960s, observations of cessation of cardiovascular and
respiratory functions were the main way to diagnose
death (Waisel & Truog, 1997: 683) and remain largely
the cardinal signs even today outside hospital situations
(Crimmins, 1993; Knudsen, 2005: 43; Poppe &
Bottinger, 2006; Robinson, Murphy, & Jacobs, 2003).
Despite these long-standing criteria, the interest in

determining death through employment of brain death

criteria has grown steadily over the last few centuries.
The first person to advocate the idea of brain death
appears to be Moses Maimonides (1135e1204), who
theorized upon the jerking movements in decapitated
humans. He argued that these movements did not represent life or centralized control (Laureys, 2005).
Later, 19th century theories about brain death were
derived from theories about intracranial pressure and
its apparent causal relationship to respiratory arrest
(Settergren, 2003). In 1959, French neurologists
Mollaret and Goulon identified a particularly deep and
apparently irreversible coma that they described as
coma depasse (Laureys, 2005: 899). In 1968, a combination of developments in intensive care technology
and the rapid rise and interest in human organ transplant
surgery prompted the Harvard medical school to convene an ad hoc committee to develop a new criteria
for death that matched the complexity and biological
implications of those developments (Giacomini,
1997). These Harvard deliberations were historically
significant because the formulation of brain death developed by their ad hoc committee established the basic
criteria from which all subsequent revisions and debates
have derived.
Since that time there have been other legislative and
professional changes that have advocated one of two
definitions of brain death. In the USA, the Presidents
Commission Report (1981) on Defining Death and
the Uniform Determination of Death Act settled on
a whole brain definition of death (Truog & Fletcher,
1990). In the UK, the Conference of Medical Royal
Colleges and their Faculties settled on a brain stem
definition of death (Sundin-Huard & Fahy, 2004).
Over 80 countries have now adopted one or the other
of these definitions of brain death (Bernat, 2005b).
The clinical pathway to determination of brain death
begins with a state of coma. Depending on the cause of
the coma and the extent of brain damage patients may
develop locked-in syndrome, a vegetative state, chronic
coma or brain death (Laureys, Owen, & Schiff, 2004).
Brain damage begins a few minutes after cessation of
cerebral blood flow (see Bernat, 2004: 163) with global
destruction of brain cells after 20e30 min. Brain cell
death leads to diffuse cerebral oedema with a resultant
increase in intracranial volume (and therefore pressure).
As pressure builds in the rigid skull vault, intracranial
pressure exceeds the pressure of blood flowing to the
brain and circulation ceases. The contents of the brain
then start to partially herniate into the brain stem.
During these physiological changes, further changes
at the cellular and molecular level occur (in the rostral

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ventrolateral medulla) that create a deteriorating

conflict between pro-life and pro-death neural programs, with pro-death programs becoming dominant
(Chan, Chang, & Chan, 2005). These processes in their
turn accelerate a programmed cell death both as a response to interruption of vital metabolic nutrients and
vicariously from stress (Vaux, 2002; Vaux &
Korsmeyer, 1999). Whole brain death originally included the cerebral hemispheres, brain stem, cerebellum, and spinal cord, but the spinal cord was dropped
from the definition when it was discovered that most
dead people retained or regained reflexes from this
area after a short time (Truog & Fletcher, 1990: 204).
Determining whole brain death or brain stem death
follows the same clinical principles: assessment of state
of coma, establishment of sustained apnea, and assessment of brain stem reflexes (Plum, 1999). Confirmatory
tests are also helpful. These tests include EEG [recording of the usual spontaneous electrical signals of the
brain], cerebral angiography [injecting contrast dye to
display cerebral blood flow], transcranial Doppler ultrasonography [ultrasound imaging], somatosensory
evoked potentials [recording of evoked or stimulated
signals in a brain] and scintigraphy [nuclear imaging]
(Sundin-Huard & Fahy, 2004). The general criteria for
death are irreversible cessation of circulation and respiration or irreversible brain function (whole brain, that
is, cerebral hemispheres and brain stem; or brain stem
alone). These criteria are not reliable in the newborn
period (Diamond, 1998).
There is still a wide variability in the brain death criteria that is academically advocated around the world
and these include the whole central nervous system,
whole brain, brain stem, and the neocortical area/cerebral hemisphere (higher brain) (Facco & Machado,
2004). Initially, the development of intensive care technology led to an increase in survival of acute brain damaged patients (Laureys et al., 2004) but the incidence of
these kinds of patients is decreasing or stabilizing due to
advances in neurocritical care and falling incidence of
road accidents in the developed world (Doig & Rocker,
2003).
There has been significant debate about why brain
death was chosen as the main criteria for death itself.
These reasons include a desire to relieve financial costs
to families (Schlotzhauer & Liang, 2002), the social
pressure to bring psychological relief to families of
the sick, freeing up beds or respirators in intensive
care units (ICU) (Pernick, 1999), and removing grounds
for objections to organ harvesting (Karakatsanis &
Tsanakas, 2002). The increasing demand for organs
has been regularly implicated in discussions about

1535

motives for brain-based determinations of death (Bos,

2005; Doig & Rocker, 2003; Truog, 1997). Against
this view, Diamond (1998) rejects any suggestion that
support for concepts of brain death are a result of a conspiracy of body-snatchers, grave robbers and transplant lobbies. However Giacomini (1997), in an
extended document analysis of the 1968 files of the Harvard ad hoc committee, has persuasively demonstrated
the powerful influence exerted by the transplant lobbies
within the medical community at that time.
Clinical, philosophical and sociological objections
During the 40 years or so since the deliberations of
the Harvard committee, objections to the concept of
brain death came in thick and fast with no recent indication of a slow down (see Machado & Shewmon,
2004; Youngner, Arnold, & Schapiro, 1999). Some authors have argued that organic definitions of brain death
will never replace cultural and social definitions of
death (Gervais, 1989; Jones, 1998; Sass, 1992), and besides, consciousness cannot be checked by any medical
test so the diagnosis of brain death remains an unproved
hypothesis (Karakatsanis & Tsanakas, 2002: 140).
Creating a sharp division between life and death has
also been argued to be artificial since no such distinction actually exists in nature itself (Halevy & Brody,
1993).
Bernat (2004) and Laureys (2005) assert their distaste for the phrase brain death on the grounds that
it implies that there are other kinds of death or that it
is only the brain that is dead in these cases. Bernat
(2004: 370) further asserts that death is fundamentally
a biological phenomenon, all other uses being merely
metaphorical. People must be dead or alive because
no-one can reside in both. Their assertions fly in the face
of a diversity of findings about both biological AND
social understandings about death.
For example, many authors have questioned the
veracity of brain death even when the criteria have all
been met. The question, is the brain really dead?,
seems to have plenty of evidence for a decisive no
(Banasiak & Lister, 2003; Karakatsanis & Tsanakas,
2002; Truog, 1997; Waisel & Truog, 1997; Zamperetti,
Bellomo, Defanti, & Latronico, 2004). The work of
Vaux (2002) and Vaux and Korsmeyer (1999) ably demonstrates the co-existence of both live and dead and living and dying cells in all multi-cell organisms including
humans. Furthermore, Waisel and Truog (1997: 684)
point out that many so-called brain dead patients are
capable of reproduction, a criterion that many biologists
would regard as the sine qua non of life.

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A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

Several researchers have observed how both health

care workers and families hold ideas about life and death
in co-existent and situationally contingent ways
(Kaufman, 2005; Lock, 1996; Sundin-Huard & Fahy,
2004; Veatch, 2005). This complements the very longstanding work by medical and social science colleagues,
outside the determination of death field, that death and
dying are viewed as social and not simply biological experiences (see Blauner, 1966; Cassell, 1974; Charmaz,
1980; Guthrie, 1971; Hartland, 1954; Kalish, 1968;
Leming, Vernon, & Gray, 1977; Michalowski, 1976;
Vernon, 1970; Vollman, Ganzert, Picher, & Williams,
1971). Kalish (1968), for example, has argued that concepts of organic, clinical, and social perceptions of death
are commonly fluid ideas and may co-exist and change
for carers and the dying person. Cassell (1974) has
argued that both death and dying e for clinical staff and
families e are not simply viewed as bodily processes
alone but are personal and social experiences. Categories
of death or dying are not so simply characterized in real
life situations as living or dead or as metaphorical.
Other objections include the tendency for absence of
evidence about consciousness to be construed as evidence of absence of consciousness (Diamond, 1998);
the tendency for brain shock (ischaemia penumbria)
to mimic brain death and obscure possible recovery
(Sundin-Huard & Fahy, 2004); and vague and imprecise
use of the concept overall (Shewmon, Capron, Peacokk,
& Schulman, 1989; Truog & Fletcher, 1990). Many
others have also questioned the problem with phrases
and terms such as futility of treatment or irreversibility of brain function. These have been questioned conceptually (Bernat, 2005a; Cohen-Almagor, 2000; Cole,
1992) and clinically and statistically (Shewmon, 1987).
Finally, there has been widespread concern about
how well understood the concept is among clinicians,
including those who work in transplantation and intensive care (Conrad & Sinha, 2003; Winkler & Weisbard,
1989; Youngner, Landfield, Coulton, Juknialis, & Leary,
1989), not to mention that many places do not have experienced neurologists available to help with any of this
uncertainty (Bernat, 2005b). In some developing countries, the number of neurologists per capita of population
is estimated at one in three million people (Baumgartner
& Gerstenbrand, 2002). There are further concerns, in
more affluent countries, about the wide variation in experience and qualifications of doctors involved in brain
death determination (Sundin-Huard & Fahy, 2004: 69).
And the problems do not stop here. Although according to Gervais (1989: 9) we normally proceed from
theory to criteria to tests, not only have we got this process out of order by beginning with criteria but also the

tests themselves are not entirely compatible with those

criteria (Waisel & Truog, 1997: 684). Tests for brain
death have been subject to equal criticism and scepticism. As Bernat (2004: 161) reminds us, making the
claim of irreversibility of brain death is one thing but
proving it is quite another. The tests for brain death
are about as good as the operators in charge of the tests
and the people interpreting them (Conrad & Sinha,
2003; Young & Lee, 2004).
Tests in cerebral angiography are invasive and technically difficult to perform (Young & Lee, 2004: 503)
and may have deleterious impacts on other clinical
signs (Sundin-Huard & Fahy, 2004: 69). Sonography
and CT scans (three dimensional X-rays) also have major problems with false positives, and MRIs (magnetic
or radio wave scans) are insufficient tests on their own
(Young & Lee, 2004: 503). EEGs cannot diagnose brain
death though they may help confirm it (Moshe, 1989;
Schneider, 1989) and anyway do not supply information
about brain stem function (Facco & Machado, 2004).
Scintigraphy e the use of a nuclear tracer chemical to
assess blood flow e is apparently an excellent test,
but much depends on how well the test is actually performed. Therefore, given this rather common problem,
even this test can only provide conditional support
rather than replace clinical assessment (Conrad &
Sinha, 2003: 313; Laureys et al., 2004: 537, 543).
This is an ironic, final observation given that the tests
are frequently looked for as confirmatory of the clinical
assessments and not the reverse.
In concluding this summary of objections to the
concept of brain death it should also be observed that
regular reviews of the recent debate about the determination of death have been singularly incestuous in academic terms. In other words, most of the deliberations
about brain death have been relatively closed conversations between medical, philosophical and legal communities and seldom ones that include the social sciences.
How the determination of death by the medical or legal
profession is itself a social and cultural activity is rarely
acknowledged. Important social studies of dying have
not been consulted to understand congruence or dissonance between biomedical and social ideas of death
and dying. Why such definitions are resisted or
supported by wider communities has witnessed few
attempts (see Pernick, 1996, 1999; Veatch & Tai,
1980, for important exceptions) to check and examine
the parallel history of how understandings of death
have changed or evolved in human cultures in general.
Some authors have argued that the early Harvard
committee and Presidents Commission displayed a distrust of non-medical, outside opinion about

A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

determination of death, especially suspicion of those

from law, philosophy and thanatology (Pernick,
1999: 13e18). However, it is also true that seminal histories about our changing understandings of death by
the French historian Philippe Aries (1974, 1975,
1981) were too late for the Harvard ad hoc committee
(1968) (but not for the 1981 Presidents Commission).
In the Presidents Commission (1981) report only two
historical references were noted by the commission e
Michel Vovelles (1980) article on the rediscovery of
death since 1960 and a fictional reference to Edgar
Allan Poes Fall of the House of Usher (Presidents
Commission, 1981: 4, 82). On the other hand, other
important related work did exist at that time, and was
ignored, and unfortunately these did have important historical bearing for that committees work (for examples,
Borkenau, 1965; Freud, 1915; Moore, 1946; Sudnow,
1967; Toynbee, 1968; Van Gennep, 1908/1969;
Williams, 1966).
Williams (1966), for example, surveyed 30 years of
psychological abstracts to assess changing attitudes to
death during this period, primarily in the USA. Sudnow
(1967) studied 200 hospital deaths, most of them comatose before their death, and made careful observations
of staff reactions. He argued that social meanings of
death are drawn from particular professional practices
of a situation. Van Gennep (1908/1969) is a classic
anthropological work that provides important insights
into how dying and death is commonly divided up by
onlookers into social stages of transition. This process
rarely results in an idea of death as annihilation but
rather transformation e a crucial insight in explaining
why modern peoples might not easily go along with
a definition of death they cannot actually see for themselves. Had even the most basic findings and insights of
these early works been highlighted or incorporated into
deliberations about brain death in the late 1960s both interpretations of staff and family behaviour and/or the
policy recommendations might have looked substantially different.
The concept of brain death has suffered a litany of
clinical and philosophical objections but these objections themselves have overlooked a broader, and arguably more important, epistemological problem with
the ascendant definition of brain death. Definitions of
brain death have ignored the historical and sociological
basis of human understanding of death itself. By ignoring the parallel literature on the history of death and dying, and sociological studies of how death and dying is
commonly perceived in social settings, determination
of death literature has become idiosyncratically technical and de-contextual. The evidence for this problem is

1537

further demonstrated by an examination of how the debate about determination of death persistently views the
dying person e not as a social being e but rather as
a lone and psychologically isolated entity.
The dying person as loner
On rare occasions it is possible to read authors in the
determination of death literature that accept that definitions of death must be viewed not only philosophically
and biologically but also as a social and cultural matter
(Jones, 1998; Veatch, 2005). However in other literature, more often than not, when the definition of death
is debated in these social and cultural terms it is in
relation to discussions about foreign cultures, particularly the Japanese and their long resistance to concepts
of brain death (Bowman & Richard, 2003; Brannigan,
1992; Doig & Rocker, 2003; Kimura, 1991; Kita
et al., 2000).
With the exception of some Christian Fundamentalists (Campbell, 1999) and Jewish groups (Rosner,
1999), Western ideas about death are assumed to be
less resistant to medical definitions of death and that
the general public is more willing to accept this kind
of leadership. In this way, dissent or resistance is attributed to religious or ethnic difference and not to a wider
and deeper schism in public understanding between the
nature of death and the end of identity. Dissent or
resistance is too commonly localised in minority or foreign groups. Indeed, the (US) Presidents Commission
Report of 1981, entitled Defining Death, indicated
that it would be a definition identified by medical and
legal institutions and their professions and not individuals (Gervais, 1989).
Recently, Laureys (2005) and Machado and Shewmon (2004) conducted reviews of the determination of
death debates and claimed a broad ambit for their reviews but this turned out to be limited to medical, philosophical, legal and ethical issues e the same narrow
factors considered important by the Harvard ad hoc
committee 37 years earlier (Ad hoc committee, 1968:
337). Unfortunately then as now, there is no mention
of the social and cultural factors in America or elsewhere that are essential to a national understanding,
less acceptance, of brain death criteria. Furthermore,
Laureys (2005: 907) concludes, rather unsurprisingly
that, after all, death is a biological phenomenon.
Lizza (1993, 1999), an advocate for the higher
brain definition of death, argues that death of the
human being should really be viewed, not purely in
biological terms, but in terms of the criteria we create
for what it means to be human. In an early paper, Lizza

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A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

(1993) argued that all philosophers agree on the necessary conditions for what being a person means. It transpires that, rather unsurprisingly for philosophy and
philosophers, being human means a capacity to think.
As the sociologist C. Wright Mills (1959: 19) remarked
when referring to the epistemological bias in different
disciplines, every cobbler thinks leather is the only
thing.
Personhood, according to Lizza (1999: 441, 442),
may express itself in three possible ways. First, a person
may be a member of a species (whether dead or alive)
such as the human race. Secondly, a person may be
psychological or characterological; that is, a presence
behind the organic/biological appearance. Finally, a person may be a unique personality. The philosophical
problem for Lizza is which of these categories of explanation best accounts for what we want to say about, for
examples, death, permanent vegetative states, or anencephalics. There are two obvious social problems with
these clean categories of personhood.
First, many people hold these categories simultaneously and changeably. People become attached to
others (both living and inert objects) because of their
social relationship to those persons or objects. The
idea of personality or the general character behind
things as they appear are of secondary importance to
the way in which others relate to that person or object.
Person is not simply a being but a property or quality given/imposed on someone or something by others.
To employ a philosophical term, person is not an essentialist category for most people (a quality in and
of itself divorced from the rest of the world) but one
born from, and given meaning by, a perceived history
of social reciprocity. Identity is created in the minds
of others by a history of relationships to persons or
things.
Secondly, technical definitions of personhood or
brain death, if not inclusive of the people for whom
it is designed (that is, ordinary everyday people), are
merely academic categories that (1) are not likely to
adequately explain death for people who are not
involved in their formulation; and (2) are even less
likely to explain attachment for most people e an
important social factor in understanding family and
staff resistance to a diagnosis of brain death. In other
words, definitions of personhood that emphasize
a lone and highly individualized view of dying as
merely thinking or personality fail to understand
dying as a social relationship. Not understanding the
reciprocity inherent in both personhood and attachment leads Lizza (1993: 361) to some ironically
impersonal conclusions:

In the ordinary way of speaking, Paul Brophy

(a fictitious example) refers to the person and the
human being. However, after Brophy lost higher
brain functions, Paul Brophy no longer refers to
Paul Brophy, the person, since Paul Brophy, the
person, no longer exists. What lies in the hospital
bed, what we refer to by Paul Brophy is only Paul
Brophy the human being.
Unsurprisingly, as a holder of this above view, Lizza
(1993: 358) is somewhat bemused at the fact that the
majority of people and family remain emotionally committed to people in a persistent vegetative state (PVS).
Yet, Lizza displays no subsequent awareness that the
asocial, academic view of personhood that he rehearses
may be the main obstacle in his own understanding of
bedside behaviour toward PVS patients.
This idea that a person is a lone quality separate for
the relationships that create it, sustain it, and give it
meanings, is widespread in the determination of death
literature. Diamond (1998: 74) writes poetically about
determining death as if this has nothing to do with social
relationships and instead draws from medieval religious
imagery that again focuses entirely on the lone individual; What is being attempted by all conscientious
attending physicians is to know the unknowable, that
is, the point at which the soul leaves the body.
Settergren (2003) quoting from Lachs (1988: 250,
251) continues this eulogy to the socially unconnected
individual:
When we unalterably lose the ability to will and
to do, to think and to hope, to feel and to love, we
have ceased existence as human beings. The only
humane course then is to declare us dead and to
treat us accordingly..once the human person is
gone, in the faltering body there is no-one there.
In this above view, human beings are NOT reciprocal
beings, not people who share a common will and identity with family and friends; acting and hoping together,
not only just giving but also receiving affirmation, feelings and love from others.
Once again, many of these recent views from medicine, bioethics and philosophy in general have emerged
because they consistently fail to engage with parallel
social and medical sciences discussions and data about
the social nature of dying that are cognate to the determination of death literature. The past seminal work of
sociologists studying death and dying like Blauner
(1966), Glaser and Strauss (1965, 1968, 1971) or Charmaz (1980) or physicians Hinton (1967), Weisman
(1972) or Witzel (1975) are no-where cited or integrated

A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

into an understanding of the person-near-death in determination of death literature. More recent sociological
and clinical work about dying from Davies (1997),
Kellehear (1990), Lawton (2000), McNamara (2001),
Seale (1998), or Young and Cullen (1996), to name
only a few studies and reviews, make no appearance
in the discussions about how people understand death
and come to define it for themselves or others.
Recently, Kaufman (2005) has produced a lengthy
and nuanced ethnographic study of how hospital treatments are interpreted and employed by those at the bedside, for family and staff, and this includes issues of life
support. Kellehear (2007a) has recently published
a social history of dying showing the symbiotic relationship between dying, death and community. This historical sociology shows how the concepts of dying and
death have exchanged places several times in human
history and how, contrary to some bioethical thinking
(Veatch, 2005: 360e362), life and death are rarely
seen as opposites or absolutes. It remains to be seen
whether these recent studies enjoy any more success
in restoring a sociological balance to the loner view of
dying than the equivalent but unused studies of the
1960s and 1970s.
Dying as a social relationship
Not all philosophical commentary has eschewed
social concepts and arguments in discussions about determination of death. However, there are two problems
with even this literature. First, the number of authors
who attempt to argue the importance of social factors
in the determination of death are very modest. Secondly, among those who do advance these insights,
there is an unfortunate division between those who assert the need for more social understandings about death
and those others who provide us with empirical indicators of this reality.
Among the theory-minded writers, Cohen-Almagor
(2000: 267) argues that people are social beings. Medical language, such as vegetative states, irreversibility or futility, serve physician interests more than
patients. He emphasizes what he calls the reality-building nature of language and is not surprised at why
many families do not share the language (and hence reality) of brain death, coma, or persistent vegetative
state.
Jones (1998) wrote an intriguing paper comparing
brain birth with brain death. Although he is quick to
point out that concepts of development and degeneration are NOT interchangeable he is equally adamant
that both brain birth and death are only partly

1539

biological, the characteristics of both owing much to

social, religious and ethical values. This echoed the earlier views of both Sass (1992) and Veatch (1993) who
argued that definitional issues about death will not settle
the cultural ones. Zamperetti et al. (2004) in their review of the literature flatly declare a need for a more
pragmatic social approach to determination of death.
They argue that after 35 years we need to acknowledge
that the biological evidence for brain death is always
equivocal and advocates the need for a name change
from brain death to Irreversible Apnoeic Coma.
This name change focuses the clinical and family discussion on the likelihood of recovery and not arguments
about the nature of death itself. It is also easier to explain to the public because of this simplification and
leaves more scope for involvement and participation
of society in general and families, in particular.
Sassower and Grodin (1986), in a paper that comes
closest to recognition of the crucial importance of dying
as a social relationship, argue that it is meaningless to
provide an answer to the question, Is the patient
dead? outside a specific context. We need to know
who is asking the question and for what purpose and
how certain you want to be about the answer. In other
parts of the literature, often not citing this more conceptual material, exist support for these ideas from more
empirical and clinically oriented authors.
Robinson et al. (2003) conducted a survey of determination of death by medical transport teams in the
USA. With a 57% response rate from all available working teams in the USA (N 190) they discovered that the
key criteria for determination of death was simply unresponsiveness to advanced cardiac support. But more
interesting is their finding that the key reason for
NOT pronouncing or presuming death in their patients
was political reasons (71%). These political reasons
included the ground crews level of comfort, the flight
crews level of comfort, involvement in a crime scene,
involvement of law enforcement officers, involvement
of a child, and involvement in a humanitarian mission
of some sort.
Against these kinds of circumstance-led determinations, where the decision to presume death, or not to
presume it, are mediated by the relationships between
the patient and those others around him/her, are the prevailing social ideas about reversibility of death. Cole
(1992) argues that brain death is counterintuitive because it runs counter to peoples experience of medical
rescue in the media e TV, films or newspapers. Of
course, viewers commonly see flat line images as suggestive of death but just as commonly (and perhaps
more importantly) such images are demonstrated to be

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A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

reversible. Reversibility is not only witnessed in scenes

of medical resuscitation but also the rebuilding of other
seemingly destroyed objects and organizations such as
engines, cities or houses. The very idea of irreversibility
is both ahistorical and inconsistent with social experience. According to Cole, it simply doesnt make
sense.
The experience of medical staff and families working with brain dead patients actually supports e not
undermines e this sense of continuity. Brain dead
patients look alive e they are pink and breathing (Truog
& Fletcher, 1990); they sometimes respond to surgical
incision with elevated blood pressure and respiration
(Karakatsanis & Tsanakas, 2002: 129); they are capable
of reproduction (Waisel & Truog, 1997); they develop
bedsores and pneumonia, something that cadavers dont
do (Sundin-Huard & Fahy, 2004: 66); and they move in
their beds, mimicking restlessness, and grasping at
deliberate or accidental stimuli (Turmel, Roux, &
Bojanowski, 1991). This is not confusion, misapprehension or misconceptions by the general public
about those who are brain dead (Laureys, 2005: 899;
Lizza, 1993; Siminoff & Bloch, 1999: 187). By most
social criteria, the brain dead do appear alive.
Moreover, many of the brain dead resemble those
asleep, a more familiar experience that often attracts
similar attentions and supports (Aubert & White,
1959). People who sleep often require bedding and favourable environmental conditions, especially protection from unnecessary disturbances. Furthermore,
people who are ill and sleeping commonly require or attract unobtrusive checking or monitoring. These are not
the needs of corpses. Little wonder there is a widespread
desire by carers of the unconscious to support them, in
spite of whatever abstract medical reasons are offered
for the poor-responsiveness of their charges. Indeed,
wonder is only possible if somehow dying is NOT
viewed as a social relationship but merely as some abstract technical notion divorced from the everyday
world of social life and its principles of interaction,
reciprocity and meaning-making.
And even if death was declared and agreed by all e
say, with widely observed onset of rigor mortis or even
later with onset of putrefaction e this rarely ends a social relationship. In other words, it is not only dying that
is a social relationship but also death. It is NOT the case
that death kills identity whatever legal, financial and
moral changes are prompted by these bodily changes
(Veatch, 2005). Both the social commitments and emotional attachments rarely evaporate at death.
Instead, as a host of social and anthropological literature on death and dying ably demonstrates,

relationships continue to evolve at the point of death

(see for examples, Hartland, 1954; Hocart, 1953; Howarth, 2000; Kellehear, 2007b; Palgi & Abramovitch,
1984; Pardi, 1977; Riley, 1983). Relationships evolve
in memorial practices in the home, roadside vigils at
the place of death, or even in traditional graveyard visitation where talking with ones dead is historically
and sociologically widespread. Furthermore, contemporary people widely report interactions with their
dead in visions of the bereaved, dreams, seances,
consultation with mediums, or psychomanteums (see
Howarth, 2000; Kellehear, 2007b; Picardie, 2000 for
fuller details and examples). Such interactions with
the dead are believed to be reciprocal. This broader
human context of dying and death as ongoing social relationships mean that determination of death is more
determination of particular social and moral functions
during bodily decline (Miles, 1999: 313).
Therefore, the emphasis cannot be on death e as we
have seen, an inseparable symbiotic relationship between biology and culture e but on the irreversibility
of biologic, social and financial (with obvious legal
ramifications) decline. Since irreversibility can only
ever be subject to mere and fallible assessment, the legal and social challenge before us is not one of consent
but consensus. This brings us firmly into the world of
advanced directives, participatory medical decisionmaking, and civic law. These are debates about
citizenship e legal and social discourses about rights,
entitlements and obligations e not simply or solely
discussions about biology or bioethics.
Death is not decided by appeals to biology but by
a social mix of medical, legal and family consensus.
As a spouse of someone with severe dementia once remarked: Thats why Im looking for a nursing home
for her. I loved her dearly but shes just not Mary
anymore. No matter how hard I try, I cant get myself
to believe that shes there anymore (Gubrium, 2005:
314). People stay when their loved ones appear dead;
others leave when those loved ones appear fit and alive
but no longer reciprocate in recognizable ways. It is the
strength of bonding, opportunities for ongoing reciprocity of the relationship, and the future sustainability of
both, that are crucial for determining whether a relationship is finished and moving into a new phase, or whether
it is possible and desirable to hold onto the old one.
Medical and ethical information is necessary and
important, but commonly, to the surprise and chagrin
of some, not decisive. That is often because the determination of death has historically been based on community criteria of death. You are dead when WE say so, and
not simply when SOME of us say so, or even when your

A. Kellehear / Social Science & Medicine 66 (2008) 1533e1544

doctor says so (Lock, 1996: 575). In other words, any

criteria for death must draw on, or consult with wider
cultural sources and ideas than merely those from the
professions. Ignoring this fact about dying as a social
relationship will indeed bring physicians, inevitably,
predictably and unnecessarily, into conflict with families of comatose patients (Bernat, 2005a).
Conclusion
This review has made several sociological observations about past and recent literature on the determination of death. First, much of that research and
literature is ahistorical. This has meant that research
into concepts of death, and experiences of dying,
have not been placed in a wider context of changing
attitudes and behaviour. Surveys of attitudes or knowledge about brain death tend to assess peoples understanding about death from the standpoint of the
medical criteria for death. The identification of alternative, but wider sources of understanding about death
and dying, located in their biographies or communities, is not an aim of much of this research (see for
example, Siminoff & Bloch, 1999).
Secondly, omission of an historical dimension into
death and dying has also led to a related inattention to
the sociological and anthropological research into the
everyday assumptions and knowledge that people use
to construct their understandings of death and dying.
Research into social attachment and disengagement
(of staff, families or communities) toward the dead or
dying person needs to be incorporated in all new reviews of the literature as well as empirical work on
the determination of death.
Thirdly, much of the research about the determination of death has displayed an over-reliance on psychological and philosophical perspectives. While it is
certainly true that cobblers such as sociologists are
no less likely than philosophers to commend their
perspectives to any research area it is, nevertheless,
true e in language, theory and methodology e that traditional work in the determination of death has been
lop-sided. The dominant picture of dying that has
emerged emphasizes cognition, will and consciousness
over the social basis of attachment, meaning-making
and identity. So-called interdisciplinary work in this
area requires greater collaborative effort in biomedical,
bioethical and social sciences quarters of this field.
Some of the muted or absent calls for a social perspective on death and dying from biomedicine and bioethics may be due to their lack of willingness or interest
in reviewing and evaluating the literature about dying in

1541

sociological ways. However, some of the problem here

must also be attributed to the apparent lack of interest or
willingness by sociology and anthropology to enter
debates that may appear to them to be esoteric to neurology and ontology. Perhaps this is indicative on the
ongoing ambivalence and tension between the social
sciences and medicine in matters to do with the body.
But whatever causes may be implicated in this bias
toward favouring psychobiological structures over social structures we can say that this leads to one final
observation.
Debates about the determination of death have encouraged an academic climate conducive to uncritical
acceptance of biological criteria for death with an under-recognition of the crucial role of the social criteria
for death. The reluctance to view death in both biological and social terms constitutes the single most important barrier to the general publics confidence in these
scientific, legal and ethical deliberations.
For future research, this means a need for more
empirical work that fosters collaboration or dialogue
with colleagues in the social sciences, especially in
the comparative disciplines such as sociology and anthropology. Literature reviews will continue to cover
biomedical and philosophical matters but they need
to integrate the related clinical, behavioural and social
research into death and dying in areas cognate, but
directly relevant, to concerns about the determination
of death. For future policy development, it will be
important to include the communities that are directly
affected by these concepts including other health care
colleagues who must address the complexities of
brain death with little or no neurological specialist
support.
A wide remit for the determination of death is crucial
to this field because the problem of death is not only
simply a technical problem of the brain and its workings
but also about how experiences of mortality are mediated by social understandings of death and dying. As
in all sociological attempts to grapple with the human
verities (Mills, 1959), including death, this means understanding death and dying at the place where biology
and biography meet at their intersections with society
and history.
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