Exploring the Contemporary Stage and Scripts for the Enactment of Dying Roles: A Narrative Review of the Literature

Living, dying, and death

In order for the recognition and subsequent enactment of dying roles to occur, recognizable boundaries demarcating living, dying, and death are required. While, at face value, the recognition of both dying and death may appear conceptually straight-forward, in many circumstances, there is ambiguity regarding their timing and nature. For example, debate exists as to whether an irreversible coma with absent brain stem reflexes constitutes death or whether death should instead be defined as the complete loss of critical functions of a body (Beecher, Adams, & Barger, 1984; Bruno, Ledoux, & Laureys, 2009). The advent of new technologies to artificially extend life or initiate brain repair serve to further complicate this picture (Hart, Sainsbury, & Short, 1998), foregrounding a philosophical dimension to what might otherwise be perceived as a biomedical debate (Bruno et al., 2009).

The boundaries separating the worlds of the living and the dead become further blurred when viewed from a social perspective. Howarth (2000) provides the example of the social death of an elderly woman with senile dementia who is no longer recognizable to her loved ones, having long since lost the roles and relationships that shaped her identity. While biologically alive, this woman may already be considered deceased from the perspective of her loved ones, existing in a state of extended liminality in which she is neither socially alive nor physically dead. Conversely, Howarth (2000) describes numerous situations in which individuals may be considered biologically dead but kept socially alive by others. For example, it is very common for people to engage in conversations with deceased loved ones or to nurture their ongoing biographies through celebrations of key milestones, anniversaries, birthdays, and “deathdays” or to maintain shrines or memorials for persons who have died (Howarth, 2000).

Given the degree of ambiguity surrounding the nature of death, it is perhaps not surprising that the construct of dying also lacks conceptual clarity. This is because dying, like death, is not only a medical phenomenon but also an existential, psychological, and social experience (Kellehear, 2009a). At its heart, therefore, debate around both the timing and nature of dying is one which is philosophical in nature and reflective of the multiple significances attributed to different forms of dying. An examination of the different facets of this debate is critical to understanding role change among the dying since it exposes the manner in which different perspectives can influence beliefs as to who can be regarded as dying and how dying is thought to occur.

A useful starting point is to note that dying and living need not be mutually exclusive states, nor is dying the opposite of living. For example, logic seems to suggest that it is necessary for a dying person to be alive; otherwise, they are not dying, but dead (Scarre, 2009). Certainly, the ethos of the palliative care movement emphasizes the principle of living well while dying, pointing to a conceptual understanding of living and dying as overlapping states of being (Palliative Care Australia, 2005; World Health Organization, 2007). Further to this, there are some who argue that, given the inevitability of death, all people are, in fact, dying from the day they are born (Bowman, 1965), while others contend that organisms undergo a significant period of maturing before they would normally be considered to be in a state of dying (Scarre, 2009).

Such points of theoretical division are very important and largely unexplored when considered in the context of dying roles, particularly with regard to status changes. If dying is simply considered to be a state in which individuals are cognisant of their own mortality, then many of the functions and behaviors surrounding dying roles should be observable in people for whom no formal “pronouncement” of dying has been offered. In essence, therefore, strong similarities between core functions of “living roles” and “dying roles” would be present. If this were to be the case, then as death draws nearer, individuals would experience an escalation (and in some cases an enrichment) of key aspects of what is an already familiar dying role rather than a transition into an entirely new status. However, if entry to the dying role represents the transition of a dying person into a new and unfamiliar status, then the emphasis on the point at which dying is recognized, as well as the rites of passage, functions, and experience of the dying role take on a different significance.

A further possibility is that dying may not be a status in its own right, but rather representative of the liminal phase between the statuses of living and dead (Froggatt, 1997; Seale, 1998). Turner (1974), building on the earlier work of anthropologist Arnold van Gennep (1909/1960), described the rites of separation and symbolic behaviors that accompany the liminal phase between an individual’s separation from one status and eventual incorporation into another. According to Turner (1974), within this liminal phase, the person undergoing a status transition will be cut off from wider societal structures, entering into a realm in which normal social rules and hierarchies do not exist. As such, an “anti-structure” will be created, offering a sacred space within which transitions can occur (Turner, 1974). In her examination of the rites of passage within hospice culture, Froggatt (1997) likens hospice care to the institutional embodiment of liminal space in which status transitions occur, pointing to elements of the hospice environment that allow the withdrawal from normal modes of social action and support the negotiation of the boundaries between life and death.

Dying roles among early humans

In his A Social History of the Dying, Kellehear (2007b) argues that the ceremonial burial practices of early humans approximately 30,000 to 50,000 years ago, such as the elaborate dressing of the deceased and the provision of grave goods, point to a belief in a postdeath “dying journey” for which such valuable commodities would be essential if it were to be undertaken successfully. Kellehear’s (2007b) analysis is an important one as it offers the earliest clear example of the social construction of both dying and dying roles among early humans. For these people, knowledge of and beliefs concerning dying would have been shaped almost entirely through their participation in the postdeath rites of passage provided to other social group members who had died before them. In witnessing these rituals, they would have developed an understanding of dying as a process which is both reliant on and controllable by the efforts of the social group surrounding the dying individual. Furthermore, these ceremonies will have also served a social function by formalizing a point of role relinquishment by the deceased, thus allowing others to fill the role void he or she leaves behind (Walter, 2003). The role of the dying, therefore, becomes somewhat secondary to the roles of those around them in order to maintain the stability of social structures needed by the living. In essence, this marks the beginning of a socially sanctioned dying process, both controlled by and serving the interests of the living, which has been repeated throughout history.

Premodern dying roles

It is through this lens of socially sanctioned dying that a tension between the notions of autonomy and familiarity associated with the “tamed” deaths of medieval times, famously proposed by French historian Phillippe Aries (1974, 1981), becomes apparent. While, at least at face value, the more central role of individuals with regard to the processes surrounding their own dying would seem to point to greater autonomy, realistically the choices which were afforded to the dying individual will have been shaped and sanctioned according to the familiar prevailing social norms of the time. For example, during the period of time that formed the basis of Aries’ (1974, 1981) premodern analysis, socially approved dying scripts within Western societies reflected the dominance of the Christian church. A morally good death was thus one which was Christ-like in nature and, as such, social expectations were that the dying individual would avoid temptations such as despair, loss of faith, or spiritual pride (Walters, 2004). Steps to ensure the achievement of a morally good death went as far as the creation of illustrated scripts for dying known as the “ars moriendi” (the art of dying) which were developed to guide the dying person and those around them toward the accomplishment of a saintly death by avoiding any behaviors that may steer him or her from this path (Gittings, 2009).

Modern dying roles

The rise of the natural sciences and medical positivism and the subsequent relegation of religion, philosophy, and humanism during the 18th century ushered in new key actors and significantly altered scripts in the drama of dying. During this time, powerful professional groups, particularly medicine, established control over the dying process (Hart et al., 1998). Given the focus of biomedicine on curing illness, dying came to be framed as problematic and, therefore, control over dying centered on death prevention (or more realistically, postponement). This paved the way for the engineering of death and dying into a secularized, technical, and depersonalized affair that was managed by professional and bureaucratic institutions, shrouded from the view of the majority of the population and, indeed, often hidden from the dying themselves (Glaser & Strauss, 1965, 1968).

Many argue that the hidden, lonely, and impersonal nature of modern dying was clearly exemplified by the way in which dying people were managed both prior to and then after death. Concerns surrounding the medicalization of dying were brought to popular attention by Elizabeth Kubler-Ross (1969) who bemoaned modern dying as having become “gruesome, lonely, dehumanised and mechanical” (p. 6). Others point to the relocation of the elderly and the dying to nursing homes and hospices as a social mechanism to assist in removing thoughts of death and the dying from public consciousness (Stephenson, 1985). Elias (1985) highlights the “screening off” (p. 23) of the dying from others (particularly children), describing a sense of embarrassment experienced by the living when in the presence of dying people. Processes such as these resulted in dying people finding themselves bit-part players at best or, at worst, roleless in the narrative of their own death.

Contemporary Dying and New Machinery of Control

The emergence and subsequent growth of the modern hospice movement since the late 1960s; the increasing focus on death in films, plays, and novels; and the debate around euthanasia have all contributed to a gradual rekindling of public discourse of death (Doka, 2003; Walters, 2004, p.1). It should be noted, however, that “the revival of death,” as described by Walter (1994) really refers only to illness-related death, while almost all other forms of death remain hidden and unrecognized (Field, 1996; Kellehear, 2009b). Regardless, death is no longer the taboo subject that it once was (Bingley et al., 2006; Seale, 1998; Walters, 2004). Furthermore, the rise of individualism and the perceived right to autonomy as a moral prerogative within Western society have resulted in challenges to established medical hegemony, bringing openness about diagnosis, prognosis, and patient choice to the forefront of care (Field, 1996; Seale, 1998). At face value at least, these changes would point to a renewed and more self-directed role for the dying individual in regard to his or her own death. However, as has been the case throughout history, new mechanisms of control significantly curtail the scope in which the dying roles of dying people and their families can be enacted.

The rise of palliative care

The availability and provision of palliative care services are often highlighted as serving a critical function in ensuring quality end-of-life care. Good, contemporary evidence exists, demonstrating the benefits of palliative care services in improving patient quality of life (Higginson, Costantini, Silber, Burman, & Edmonds, 2011; Bakitas et al., 2009; Temel et al., 2010; Zimmermann et al., 2013). Palliative care services include among their stated aims a commitment to patient (and family) centeredness, recognition of individual uniqueness, and delivery of collaborative, holistic care, all of which, at least theoretically, should foster an approach to dying that is markedly more open, personalized, and humanistic than that of the modern era (Dahlin, 2013; Palliative Care Australia, 2005; World Health Organization, 2007). Recent survey data of the attitudes of 47 internal medicine doctors and 39 hospice nurses would seem to support this position, with 100% of respondents indicating a belief that hospice care gives patients some autonomy and 95% agreeing that it provides patients with a sense of control (Bakanic, Singleton, & Dickinson, 2016).

The rise and growth of palliative care has not, however, been without its critics. Numerous authors have pointed to an entrenched state of bureaucratization within hospices as contributing to considerable homogeneity and routinization in the design and delivery of palliative care services, consequently compromising the implementation of individualized care (Floriani & Schramm, 2012; James & Field, 1992; McGrath et al., 2005; Seale, 1998).

The expanded scope and medicalization of palliative care has also been a source of some criticism. As early as two decades ago, Walter (1994) asserted that palliative care had metamorphosed into little more than a façade behind which modern medical practice continued to control the dying process, under the auspices of an “imagined tradition” of holistic, person-focused, nonhierarchical care. Walter (1994) argued that this change was clearly observable through the rise of the medical subspecialty of palliative medicine and consequent subjugation of other professions and lay workers within palliative care. He further suggested that this transition had brought with it an increased emphasis on pharmacological symptom control, replacing the historical focus on the act of caring for the dying, which once was regarded as the hallmark of the hospice movement. Recent literature arguing for the expansion of palliative medicine does certainly place emphasis on the importance of symptom management, not just at end of life, but throughout the illness trajectory. It should be noted, though, that other elements of care, such as support with decision-making and future planning, quality of communication, and spiritual assessment are also detailed as being key to the delivery of effective palliative care (Hughes & Smith, 2014; Strand, Mansel, & Swetz, 2014).

It is, perhaps, because of this broadened focus that doctors within palliative care settings might (somewhat paradoxically) also find themselves prone to the well-established critique as to whether a more holistic approach within medicine results in an extension of the profession’s sphere of control beyond that of individuals’ physical bodies, to also encompass the way that they think, feel, and behave (Armstrong, 1986; Illich, 1975). Of course, such criticisms do, to some extent, leave palliative care physicians in the unenviable position in which they are open to criticism of medical imperialism if they attempt to engage in more holistic care or medical reductionism if they do not.

When considered in the context of dying roles, however, these observations do point to a broadening of medical (and institutional) control over what were once personal elements of the dying process. Furthermore, they are suggestive of a propensity (albeit well-intentioned) among palliative care professionals to emphasize the centrality of their service in ensuring the successful enactment of dying roles (Emanuel et al., 2007; Parker-Oliver, 2000). While such positions are not necessarily problematic (and might often be helpful), they do bring with them the risk of obscuring the strengths and expertise that patients and their informal care networks might already possess in the management of their own needs (Hughes, 2015).

The “good death” and the “good patient”

“The good death” according to Kellehear (2007b) is one which “conforms to the wider community expectation of making death as positive and meaningful as possible to as many people as possible” (p. 90). This definition acknowledges the powerful influence that societal norms and expectations have in shaping and framing preferences and beliefs around the dying process. While death may be personally experienced by the dying person, the meanings and associated practices surrounding death are, in essence, a product of society. As such, health professionals, family members, and the broader community all exert a powerful influence in the construction of what may be regarded as “good” and conversely “bad” deaths (Kellehear, 2007b; McNamara, 2004). There is now a large body of published literature stemming from a variety of health professions either directly or indirectly addressing the concept of, or strategies for, the achievement of “the good death” (Granda-Cameron & Houldin, 2012). This is, perhaps, reflective of a perception among health professions regarding their critical role in enabling a positive dying experience and arguably evidence of their efforts to “own” aspects of it. Whatever the intention behind this strong interest in defining and fostering “the good death,” such efforts bring with them the risk of nurturing a professionally dominated approach to the management of dying. Furthermore, if not managed well, the large number of professionals vying for a center stage position in one or more acts of the drama of dying, runs the unintended, but not insignificant, risk of fostering role confusion and diminishment for the dying person and his or her loved ones.

As cultural understandings of death and dying have evolved over time, so too have contemporary beliefs and practices concerning what constitutes the good death. In their review of the literature regarding “the good death,” Proulx and Jacelon (2004, p. 118) identified a number of common themes including: death with dignity, peacefulness, physical comfort, autonomy, preparedness, connectedness with loved ones, awareness, discretion, meaning, and acceptance. Almost all of these themes have in common a requirement for the dying individuals to be both accepting of and at peace with their dying in order for the good death to be achieved. This observation is further evidenced by the findings of Zimmermann (2012) whose recent discourse analysis of palliative care literature found that “acceptance” of dying was regarded as a necessary precursor to effective contemporary end-of-life care. Zimmermann (2012) highlights that, while acceptance of death is welcomed by health workers, perceived denial of death will be met with professional resistance and offers of psychological assistance.

While, at face value, the serene acceptance of death may seem to be in the best interests of both individuals who are dying and their loved ones, critics point to concerns regarding the influence of such strong ideological beliefs in acting as a mechanism of social control. They argue that “good deaths” are typically those which are judged to be socially desirable by the professional caregivers of the dying and that deaths that occur outside of these professionally derived norms are considered problematic (Hart et al., 1998; McNamara, Waddell, & Colvin, 1994). Patients who adhere to the parameters of “the good death” are considered “good patients” but those who do not are labeled as being at risk of a “bad death” and will be gently cajoled into beliefs and behaviors that are compliant with the good death model (Hart et al., 1998; Li, 2004; Li & Arber, 2006). The end result of this is the construction of a dying process that is reliant on new biomedical technologies and specialist professional input, thus further reinforcing professional power (Hart et al., 1998; Kellehear, 2007a; McNamara et al., 1994; Timmermans, 2005). In essence, the ideology of “the good death” serves as a new form of social control over dying people, constraining their choices and tightly scripting the nature of their dying (Hart et al., 1998). It is, perhaps, in response to this that an increasing number of academics and clinicians have made calls for greater flexibility in any interpretation of the good death (Hardy & Good, 2014; Scarre, 2012; Walters, 2004).

Considered in the context of role change, the social value placed upon the attainment of a “good death” places powerful pressure upon the dying to swiftly and effortlessly transition to normalized expectations and behaviors associated with the dying role. For many, these expectations will be in stark contrast to the social expectations surrounding the illness roles which they had until recently held (Parker-Oliver, 2000). The discourse of illness has long been recognized as being laden with war metaphors framing social expectations of the illness role as one in which an individual must fight and battle against the enemy that is their disease (Sontag, 1979). However, once doctors determine this battle has been lost, an expectation then falls upon the dying individual to relinquish their soldier-like characteristics and instead adopt a veneer of calm acceptance of the approach of their death. Those who resist this new identity may find themselves labeled as “bad patients” at risk of a “bad death” and thus be coaxed and encouraged to play the role expected of them.

The “good death” and the “good carer”

Idealized conceptualizations of the good death can also place significant pressure upon informal carers of the dying (such as family members and friends), particularly in relation to popular notions that the good death ought to occur at home (Pollock, 2015). Research suggests that up to two-thirds of the general public identify home as their preferred place of death (Higginson & Sen-Gupta, 2000; Leadbeater & Garber, 2010) and approximately 80% of patients who have never been admitted to a hospice wish to die at home (Arnold, Finucane, & Oxenham, 2015). Such beliefs, while not unreasonable, can result in a strong sense of obligation upon family members and friends of the dying to support a home death. The enactment of these unfamiliar caring roles can result in considerable emotional, physical (and sometimes financial) burden on both the carer and the dying individual, particularly if the process of dying proves lengthy or is accompanied by issues such as intractable pain (Pollock, 2015). It is unsurprising, therefore, that there are increasing calls for preferred place of death to be revisited on an ongoing basis as patients near end of life, so as to ensure that changing preferences are acknowledged and (where possible) acted on (Arnold et al., 2015; Pollock, 2015).