INTRODUCTION
Perceptions and social norms about death and dying change over time according to cultural values, beliefs, and attitudes (Aries, Reference Aries and Weaver1981; Kellehear, Reference Kellehear2007). Though death itself may be a predominantly physical or biological event, both death and the process of dying are imbued with social, cultural, and political meanings. These meanings have shifted temporally in Western societies. At various times, we have feared, abhorred, denied, accepted, embraced, and, ultimately, managed death and dying (Aries, Reference Aries and Weaver1981; Kellehear, Reference Kellehear2007; Zimmermann & Rodin, Reference Zimmermann and Rodin2004; Zimmermann, Reference Zimmermann2007).
The notion of a “good death” is not new, but it has evolved over time. According to Kellehear (Reference Kellehear2007), dying in the Stone Age occurred after death, when family members prepared the body for its journey, providing tools or other important cultural artifacts (Kellehear, Reference Kellehear2007). Dying was a natural part of life, a public activity embedded within the community. The development of agriculture, settlements, and, with them, infectious diseases and an awareness of impending death changed the process of dying. The dying process gradually came to precede physical death (Kellehear, Reference Kellehear2007), as people had time to make some preparations for death, usually according to religious conventions. Dying was a public/private affair: it occurred in private homes, but the dying and their families were tended to by community members (Kellehear, Reference Kellehear2007).
Gradually, however, death became increasingly private, increasingly managed (Kellehear, Reference Kellehear2007; Madan, Reference Madan1992). The “good death” came to be seen as the “well-managed death” (Kellehear, Reference Kellehear2007, p. 147). Advances in medical science and technology, as well as improved hygiene and infection control (Kellehear, Reference Kellehear2007), prolonged the dying process, allowing more time to prepare for death. Urbanization and, with it, secularization and the rising social value of autonomy, changed the “good death”: death became hidden and increasingly professionalized, requiring the services of priests, doctors, and lawyers (Kellehear, Reference Kellehear2007). Contemporary dying is characterized by professional intervention, particularly medical and technological. Modern deaths occur in institutions, many under the supervision of specialized palliative care teams.
The contemporary “good death,” what Seale (Reference Seale1998) termed the “revivalist good death,” arose as a backlash against this medicalized death and was spurred by the hospice movement (Gott, Reference Gott2008; Seale, Reference Seale1998; Walters, Reference Walters2004). Though subtle variations exist, the Western revivalist good death ideal is expressed throughout the literature as a peaceful and dignified death, free from pain and other distressing physical symptoms. Death is timely. It occurs in old age and follows a predictable course. It occurs at home, with the dying individual surrounded by family members. The dying individual is aware of and accepts their impending death, has made appropriate legal and financial preparations, and, ideally, has planned their dying experience through an advance directive (Granda-Cameron & Houldin, Reference Granda-Cameron and Houldin2012; Kehl, Reference Kehl2006). Although the notion of a “good death” is not new, there has been little or no discussion of the impact of this concept on the practice of healthcare providers and those they care for.
Death and dying are intertwined with sociocultural and political values and beliefs (Kellehear, Reference Kellehear2007; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Zimmermann & Rodin, Reference Zimmermann and Rodin2004). These sociocultural and political values and beliefs create a discourse in which a culturally unique and often tacit set of attitudes and behaviors are implicitly or explicitly conveyed and maintained (Cheek, Reference Cheek2004). According to Cheek (Reference Cheek2004), a discourse is a set of assumptions and social norms, which may be covert or assumed. From a Foucauldian perspective, discourses serve a purpose, which is usually related to power and its distribution in society. The purpose of a discourse is to frame reality in a particular way: discourses “both enable and constrain the production of knowledge, in that they allow for certain ways of thinking about reality while excluding others” (Cheek, Reference Cheek2004, p. 1142). By this definition, the “good death” is itself a discourse, which exists to create, to dictate, and to maintain social attitudes and behaviors surrounding death and dying. Thus, it is important to explore this discourse, as it will increase our understanding of its impact on persons who are dying and their family members.
The aim of this paper is to present the findings of an integrative literature review on the “good death” in Western cultures. As a discourse is culturally unique, the exploration of the discourse on “good death” was limited to Western cultures, as that is where the predominate literature is published in this area. The specific questions guiding this research are: How is death and dying shaped by the prevailing “good death” discourse? How does this influence the wider societal perception of death and dying, and, in turn, how do the wider societal discourses influence the care of persons who are dying? What are the implications of this sociocultural perception for healthcare professionals and for dying individuals and their families?
METHODS
An integrative review, which includes both experimental and nonexperimental research, is most suited to a comprehensive exploration of a topic, as it promotes a wide database and seeks to uncover patterns or themes in the literature, rather than seeking to find one “right” answer (Gough et al., Reference Gough, Thomas and Oliver2012; Whittemore & Knafl, Reference Whittemore and Knafl2005). This relativist ontology shapes all aspects of this review process. The purpose of this type of review is to integrate diverse forms of knowledge about a particular phenomenon to reach new insights and conclusions, thus synthesizing and building knowledge (Whittemore & Knafl, Reference Whittemore and Knafl2005). Specifically, an integrative review was conducted to explore the concept of a “good death” within Western cultures.
Literature Search
The first author conducted a literature search using the terms “good death” in the following databases: the Cumulative Index of Nursing and Allied Health Literature (CINAHL), Medline, PsychINFO, Academic Search Complete, and SocINDEX with full text. The search was not restricted by date, to get a sense of the evolution of the “good death” over time, but was restricted to academic, peer-reviewed journal articles written in English, focused on an adult population. Studies and articles that discussed the “good death” explicitly or implicitly were included. I excluded articles that did not discuss the “good death” from a Western perspective; those that focused on suicide, euthanasia, or assisted suicide; and those that tested tools to measure a “good death.”
The search retrieved a total of 716 articles. Duplicates, book reviews, and articles not available electronically were deleted. After scanning abstracts and/or reading the full text of the article, 35 articles were selected for inclusion in this literature review. A further 4 articles were obtained by scanning the reference lists of the selected primary sources, for a total of 39 articles. The publication years for the selected articles ranged from 1992 to 2014.
Qualitative studies, including media or discourse analyses, comprise the majority of the data, contributing 25 sources: 20 studies and 5 media or discourse analyses (66% total: 51% qualitative studies; 15% media/discourse analysis). Only two quantitative studies (5%) met the inclusion criteria. Ten sources (24%) were nonexperimental or philosophical in nature, and 2 (5%) were concept analyses.
The United States contributed the most sources, with a total of 11 (28%), followed by the United Kingdom (9 sources; 23%), Australia (8 sources; 20%), Canada (6 sources; 16%), and the Netherlands (2 sources; 5%). Belgium, Italy, and India each contributed a single source (total 8%). Please see Table 1, a data extraction chart for all the included articles.
Literature included (adapted from O'Rourke, Reference O'Rourke2014)
Data Analysis
Qualitative data analysis is inductive, thus allowing findings to emerge from themes that appear frequently in the literature, without the constraints imposed by structured methodologies (Thomas, Reference Thomas2006). Inductive data analysis aligns with the relativist underpinnings of this review.
Some structure is, of course, necessary to promote rigor and transparency, and to reduce the risk of bias. I combined Thomas's (Reference Thomas2006) inductive approach with Whittemore and Knafl's (Reference Whittemore and Knafl2005) data analysis method by organizing primary data sources into groups; themes were then analyzed within and between groups, using the constant-comparison method to expose patterns, variations, and relationships in the reviewed literature (Whittemore & Knafl, Reference Whittemore and Knafl2005). Each article was divided into the following groups based on its primary source of information:
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(Aa) Qualitative study: explored “good death” from dying participant's perspective (8).
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(Ab) Qualitative study: explored “good death” from healthy participant's perspective (1).
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(B) Qualitative study: explored “good death” from health professional's perspective (6).
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(C) Qualitative study: explored “good death” from participant and professional perspectives (3).
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(D) Qualitative study; explored “good death” in an institution (2).
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(E) Media or discourse analysis (5).
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(F) Quantitative studies (2).
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(G) Nonexperimental studies (10).
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(H) Concept analysis (2).
RESULTS
Four predominant themes emerged from the review: (1) the good death as control, (2) the wrong good death, (3) the threatened good death, and (4) the denial of dying.
The “Good Death” as Control
Control of death and of the process of dying emerged as the dominant theme in all the literature. It appeared in various ways, including controlling dying activities, controlling the timing and place of death, dying as a form of social control, and control of unpleasant physical symptoms. For individuals at the end of life, controlling dying activities was the requirement to accept death, to make choices, and to plan and prepare for dying (Broom, Reference Broom2012; Zimmermann, Reference Zimmermann2012). In the literature, this is framed implicitly, by calling an unplanned or unmanaged death a “bad” death (Seale, Reference Seale2004, p. 967), or explicitly, by referring to a planned death as a “dignified” death (Carr, Reference Carr2003, p. 227; Madan, Reference Madan1992, p. 431), and by urging dying individuals to get “everything in order” (Jacques & Hasselkus, Reference Jacques and Hasselkus2004, p. 48).
The theme of control also manifested in the literature as controlling the place of death. The hospice ideology and, with it, the “good death,” promotes the ideal of a home or “home-like” death (Borbasi et al., Reference Borbasi, Wotton and Redden2005; Carr, Reference Carr2003; Granda-Cameron & Houldin, Reference Granda-Cameron and Houldin2012; Hart et al., Reference Hart, Sainsbury and Short1998; Ko et al., Reference Ko, Cho and Perez2013; Masson, Reference Masson2002; Pierson et al., Reference Pierson, Curtis and Patrick2002; Seale, Reference Seale2004; Veillette, Reference Veillette2010; Wilson, Reference Wilson2009). In Wilson's (Reference Wilson2009) study, displacement, or being moved to another community, was identified as a “bad” death: “participants made it abundantly clear that when a dying person was removed from his or her home community, it would result in a ‘bad' death” (p. 28). In Seale's (Reference Seale2004) discourse analysis, “a death far from home is considered ‘bad’” (p. 967), and in Carr's (Reference Carr2003) study, participants reported that “dying in a nursing home is ‘bad’” (p. 217).
The “good death” as a form of social control was another manifestation of control in the literature reviewed. By providing a strong cultural script for the dying, as well as for those who care for the dying, the “good death” directed attitudes and behaviors and created a certain socially sanctioned way to die or to care for the dying (Broom & Cavenagh, Reference Broom and Cavenagh2010; Clarke, Reference Clarke2006; Goldsteen et al., Reference Goldsteen, Houtepen and Proot2006; Hart et al., Reference Hart, Sainsbury and Short1998; McNamara et al., Reference McNamara and Rosenwax2007; Seale, Reference Seale2000; Reference Seale2004; Semino et al., Reference Semino, Demjen and Koller2014; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Watts, Reference Watts2012; Zimmermann & Rodin, Reference Zimmermann and Rodin2004; Zimmermann, Reference Zimmermann2007; Reference Zimmermann2012). For healthcare professionals, social control manifested in the literature as a requirement to internalize the “good death” ideology and act according to its ideals; indeed, implicit sanctions exist for alternative behaviors (Zimmermann, Reference Zimmermann2012). As Zimmermann (Reference Zimmermann2012) reported, “healthcare workers appear to be caught in a disciplinary web, where acceptance is rewarded and resistance results in the label of ‘denial’” (p. 223). In a hospice setting, the “good death” is an ideological model to which healthcare providers are expected to subscribe (Broom, Reference Broom2012; Zimmermann, Reference Zimmermann2012). Within this model, a “bad” death is considered a “failure” (Broom, Reference Broom2012; Carr, Reference Carr2003; McNamara et al., Reference McNamara, Waddell and Colvin1994), whereas a “good death” “validates [the nurse's] sense of self-worth and the system of values shared by hospice health professionals” (McNamara et al., Reference McNamara, Waddell and Colvin1994, p. 231).
By subscribing to the “good death” agenda, healthcare professionals thus control the dying experience of individuals. Dying individuals may be pressured into behaving in a certain way, dying according to what the healthcare professionals consider to be a “good death.” As Walters (Reference Walters2004) reported: “They like you to be quiet and grateful in hospices” (p. 406). Furthermore, in Steinhauser et al.'s (Reference Steinhauser, Clipp and McNeilly2000) study, participants commented that healthcare providers implied that “You're not dying the right way, because you're not dying the way we think you should” (p. 829). As Kaufman (Reference Kaufman2000) wrote, “Once patients and their families enter the medical world, […] their actions are guided by the values and pervasive practices of that world” (p. 14). The “good death” was, in the literature reviewed, “an agenda” (Broom, Reference Broom2012, p. 228; italics added).
Acceptance of death underlies this agenda. As such, the “good death” is predicated on acceptance of death and of the dying role by dying individuals, their families, and the healthcare providers who care for the dying (Borbasi et al., Reference Borbasi, Wotton and Redden2005; Bratcher, Reference Bratcher2010; Granda-Cameron, Reference Granda-Cameron and Houldin2012; Hart et al., Reference Hart, Sainsbury and Short1998; Kellehear, Reference Kellehear2007; Ko et al., Reference Ko, Cho and Perez2013; Pierson et al., Reference Pierson, Curtis and Patrick2002; Walters, Reference Walters2004; Watts, Reference Watts2012; Zimmermann, Reference Zimmermann2007; Reference Zimmermann2012). According to Zimmermann (Reference Zimmermann2012), death “acceptance is a facilitator in the provision of end-of-life care” (p. 222; italics in original), as denial precludes the willingness or ability to prepare for death. The denial of death as an obstacle to a service such as palliative care tacitly ensures acceptance and acquiescence of the dying individual (Zimmermann, Reference Zimmermann2007). Denial of impending death is characterized as a “bad death” and signifies refusal to participate in the “good death” (Borbasi et al., Reference Borbasi, Wotton and Redden2005; Hart et al., Reference Hart, Sainsbury and Short1998; Zimmermann & Rodin, Reference Zimmermann and Rodin2004; Zimmermann, Reference Zimmermann2007). As such, the “good death” discourse “blames the individual for the existence of denial” (Zimmermann & Rodin, Reference Zimmermann and Rodin2004, p. 1777).
The “Wrong Good Death”
The wrong good death is the troubling sense that the “good death” ideal may not represent accurately what dying people consider a good death. Carr (Reference Carr2003), for example, explored the question “a good death for whom?” and examined whether the “good death” discourse privileges the needs of the dying individual, his or her spouse, or the healthcare professional. The notion of the “good death” being “easier for the palliative care staff” (Zimmermann, Reference Zimmermann2012, p. 221; see also Bendle, Reference Bendle2001; Granda-Cameron, Reference Granda-Cameron and Houldin2012; Hart et al., Reference Hart, Sainsbury and Short1998; Semino et al., Reference Semino, Demjen and Koller2014; Watts, Reference Watts2012; Wilson, Reference Wilson2009) is a disturbing, yet repetitive, theme. Wilson (Reference Wilson2009), for example, discovered that “overmedicating [occurs] to reduce demands on care staff” (p. 25), and Zimmermann (Reference Zimmermann2012) reported that acceptance of death “facilitates care of the dying patient by the nursing staff” (p. 221).
In the literature, dying individuals' ideal deaths frequently did not match the “good death” ideal. In Hart and colleagues' (Reference Hart, Sainsbury and Short1998) study, for example, participants reported a “sense of impotence after succumbing” or agreeing to “submit” to the hospice ideal of a “good death,” in which patients are blamed for alternative views: “angry, nonaccepting, and noncompliant patients become deviants who are violating the established norm” (p. 69). Similarly, Gott (Reference Gott2008) reported that many heart failure patients want neither autonomy nor awareness of dying, both central “good death” ideals Goldsteen et al. (Reference Goldsteen, Houtepen and Proot2006), and Zimmermann (Reference Zimmermann2007) wrote of the disjuncture between the normative “good death” discourse and actual patient experiences.
The “Threatened Good Death”
The theme of the threatened “good death” has important implications for palliative and end-of-life care provision, as it underscores how social attitudes and demographics exert pressures that influence and shape the “good death” discourse and, ultimately, influence the delivery of care for the dying. The future of the “good death” is undeniably threatened by the changing trajectory of dying and demographic changes. For example, an unpredictable trajectory of dying was identified as perhaps the greatest threat to a “good death” (Kaufman, Reference Kaufman2000; McNamara & Rosenwax, Reference McNamara and Rosenwax2007; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Walter, Reference Walter2003). As the “good death” is predicated on the need for awareness of dying (Kellehear, Reference Kellehear2007; Zimmermann, Reference Zimmermann2007; Reference Zimmermann2012), the unpredictable trajectory of chronic disease complicates the “good death” by making it difficult for dying individuals and healthcare practitioners to know when dying begins (Carr, Reference Carr2003; Kellehear, Reference Kellehear2007; Gott, Reference Gott2008; Walter, Reference Walter2003). Demographic changes also threaten the “good death.” Specifically, the growth of the aging population, increasing longevity of life, improved overall chronic disease management (Kellehear, Reference Kellehear2007; McNamara & Rosenwax, Reference McNamara and Rosenwax2007; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Walter, Reference Walter2003), and the projected increase in dementias (Carr, Reference Carr2003; Kaufman, Reference Kaufman2000; Kellehear, Reference Kellehear2007) have resulted in a new challenge—that is, “how to die well from slow, degenerative diseases of old age” (Walter, Reference Walter2003, p. 219). Carr (Reference Carr2003) adds: “Alzheimer's disease, delirium, or senile dementia may offer little hope of a ‘good' death […] as these illnesses may prevent the dying from establishing close and meaningful communication with loved ones and finding meaning in the dying process” (p. 227). The “good death” ideology arose from the hospice philosophy (Walters, Reference Walters2004), and from oncology (Gott, Reference Gott2008); death from cancers has a relatively predictable trajectory as well as predictable symptoms, which simplified the “good death” process (Gott, Reference Gott2008). Though still prominent, cancer deaths are being overtaken by the slow, protracted deaths that characterize chronic illness (McNamara & Rosenwax, Reference McNamara and Rosenwax2007) and, with them, diverse physical symptoms. Pain, for example, once the most prevalent and “most-feared” physical symptom of dying, may no longer be as significant during dying as other symptoms, particularly breathlessness (Gott, Reference Gott2008, p. 1117). This will necessitate changes in the provision of care for the dying.
The Denial of Dying
As dying becomes increasingly uncertain, the revivalist “good death” is giving way to a postmodern discourse of death, characterized by fragmentation and, ultimately, by “existential uncertainty” (McNamara, Reference McNamara2004, p. 936). This uncertainty culminates in the theme of the denial of dying, in which the dominant discourse abandons the dying process altogether, rendering it absent, invisible, through euthanasia or assisted suicide or death. For example, Pierson and colleagues (Reference Pierson, Curtis and Patrick2002) reported that “many patients requested physician-assisted suicide” (p. 592), and Wilson (Reference Wilson2009) wrote that participants “wanted to talk of euthanasia (referred to by one interviewee as a ‘beautiful option') […] as a way to maintain […] control over their fate” (pp. 24, 25). This need to control the timing of death (Broom, Reference Broom2012; Clarke, Reference Clarke2006; Pierson et al., Reference Pierson, Curtis and Patrick2002; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Walters, Reference Walters2004; Wilson, Reference Wilson2009) may indicate a significant shift within the prevailing discourse, one in which death is openly accepted—even “fashionable” (McNamara et al., Reference McNamara, Waddell and Colvin1994, p. 1501)—but one in which the dying process is denied. Kaufman (Reference Kaufman2000) writes that the dying process is ignored in contemporary deaths: “medicine generally doesn't allow for a transition, a process, or a passage between life and death except in the most perfunctory way” (p. 17).
This theme was most explicitly addressed in the discourse or media analysis literature, illustrating the interplay between contemporary attitudes to death and dying and prominent social values, such as the right-to-die movement, and underscoring the dynamic nature of discourse (Clarke, Reference Clarke2006; Frith, Reference Frith2013; van Brussel & Carpentier, Reference van Brussel and Carpentier2012). That is, prominent social values are perpetuated by media and percolate throughout society, gradually changing attitudes and altering practices (Clarke, Reference Clarke2006; van Brussel & Carpentier, Reference van Brussel and Carpentier2012). The discourse of death and dying is no exception. According to van Brussel and Carpentier (Reference van Brussel and Carpentier2012), “the media privilege the right-to-die discourse” (p. 496). Similarly, Clarke (Reference Clarke2006) wrote that the media focus is on “those who choose to die; it is on their desire to and the means by which they'll die” (p. 163). In this discourse, then, death itself is openly discussed. It is “not random, unwelcome, or to be feared” (Clarke, Reference Clarke2006, p. 162). But the dying process is unmistakably missing: “there are no stories of the self-reflexive or “good” death, of death occurring “naturally.” Death in communities and families is virtually absent; […] the hospice movement and other social trends are ignored” (Clarke, Reference Clarke2006, p. 163). Thus, the media present a portrait of an ideal death as a highly planned and tightly controlled event that occurs swiftly and, significantly, without a dying process.
Cultural Influences on a “Good Death”
The theme of culture demands attention because, although it did not emerge as a predominant theme across the literature, it did emerge in data subsets and may therefore be a significant motif of the “good death” in some contexts. In rural areas, for example, culture was identified as a strong factor shaping the “good death.” Rurality influenced death and dying experiences for both dying individuals and healthcare professionals; it was viewed as a “powerful cultural force” (Wilson, Reference Wilson2009, p. 28) that contributed a unique perspective to death and dying. Connectedness to family, and particularly to home, including the rural community, were identified as important features of dying in rural areas—so much so that rural residents would make considerable sacrifices in their care to prevent traveling outside of their home or community (Wilson, Reference Wilson2009; Veillette, Reference Veillette2010).
For healthcare professionals, professional cultures influenced the “good death.” Healthcare professionals' role designations shaped their perception of what is important during the dying process. Nurses reported regret (De Jong & Clarke, Reference De Jong and Clarke2009) when unable to provide a “good death” for a patient, whereas physicians reported relationship conflict or “patients who don't accept the care” (De Jong & Clarke, Reference De Jong and Clarke2009, p. 63) as factors that promote a “bad” death. A study by Steinhauser and colleagues (Reference Steinhauser, Clipp and McNeilly2000), reported that physicians' discussions of the “good death” differed significantly from that of other health professionals. Physicians voiced the most biomedical perspective on death and dying, whereas occupational therapists may view the “good death” as occupation, or the ability to do (Jacques & Hasselkus, Reference Jacques and Hasselkus2004; italics added). These differences underscore the idea that perspectives on the “good death” are socially and culturally enforced, as healthcare providers are each socialized into unique cultures within their profession. Two studies reported that professional roles shaped practitioners' views more significantly than sex or ethnic differences (De Jong & Clarke, Reference De Jong and Clarke2009; Steinhauser et al., Reference Steinhauser, Clipp and McNeilly2000).
DISCUSSION
Overall, the literature reviewed presented the idea that the revivalist “good death” discourse may not accurately reflect the realities of the dying process as it occurs or is enacted in practice, as evidenced in the four predominant themes: (1) the “good death” as control, (2) the wrong “good death,” (3) the threatened “good death,” and (4) the denial of dying.
The literature reviewed portrays a picture of death and, in particular, the dying process, that is far from good. The “good death” is presented negatively as a mode for controlling the dying process for both dying individuals and those who provide their end-of-life care (Bendle, Reference Bendle2001; Granda-Cameron, Reference Granda-Cameron and Houldin2012; Hart et al., Reference Hart, Sainsbury and Short1998; Semino et al., Reference Semino, Demjen and Koller2014; Watts, Reference Watts2012; Zimmermann, Reference Zimmermann2007; Reference Zimmermann2012). Often, the literature revealed that this “good death” agenda is incongruent with dying individuals' desires (Hart et al., Reference Hart, Sainsbury and Short1998; Goldsteen et al., Reference Goldsteen, Houtepen and Proot2006; Gott, Reference Gott2008, Zimmermann, Reference Zimmermann2007) and, in fact, may be designed to ease the care demands for health professionals (Wilson, Reference Wilson2009; Zimmermann, Reference Zimmermann2012). The “revivalist” good death is currently unsettled, threatened, and perhaps outgrown by an aging population, unpredictable illness trajectories (Kaufman, Reference Kaufman2000; McNamara & Rosenwax, Reference McNamara and Rosenwax2007; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Walter, Reference Walter2003), and diseases that prevent awareness and death acceptance (Carr, Reference Carr2003; Gott, Reference Gott2008; Walter, Reference Walter2003), within a social context that privileges neoliberal values (Raphael, Reference Raphael2007, Zimmermann, Reference Zimmermann2012). This may represent a cultural shift away from the revivalist “good death” toward a postmodern death characterized by fragmentation (McNamara, Reference McNamara2004) and, ultimately, nihilism.
Control has a critical and complex relationship with the “good death” discourse. The preoccupation with control as a unifying aspect of the “good death” speaks to the perceived importance of neoliberal political and social values of autonomy, freedom, and choice (Balducci, Reference Balducci2012; Broom, Reference Broom2012; Broom & Cavenagh, Reference Broom and Cavenagh2010; De Jong & Clarke, Reference De Jong and Clarke2009; Hart et al., Reference Hart, Sainsbury and Short1998; Hopkinson & Hallett, Reference Hopkinson and Hallett2002; Jacques & Hasselkus, Reference Jacques and Hasselkus2004; Kaufman, Reference Kaufman2000; Leget, Reference Leget2007; McNamara, Reference McNamara2004; Madan, Reference Madan1992; Pierson et al., Reference Pierson, Curtis and Patrick2002; Raphael, Reference Raphael2007; Steinhauser et al., Reference Steinhauser, Clipp and McNeilly2000; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Walter, Reference Walter2003; Walters, Reference Walters2004; Watts, Reference Watts2012; Wilson, Reference Wilson2009; Zimmermann, Reference Zimmermann2012).
Yet, within this discourse, control is paradoxical. Although the “good death” discourse overwhelmingly identified dying as an individual experience (De Jong & Clarke, Reference De Jong and Clarke2009; Goldsteen et al., Reference Goldsteen, Houtepen and Proot2006; Gott, Reference Gott2008; Hart et al., Reference Hart, Sainsbury and Short1998; Hopkinson & Hallett, Reference Hopkinson and Hallett2002; Jacques & Hasselkus, Reference Jacques and Hasselkus2004; Pierson et al., Reference Pierson, Curtis and Patrick2002; Veillette, Reference Veillette2010; Walter, Reference Walter2003; Watts, Reference Watts2012; Wilson, Reference Wilson2009), it simultaneously constrained and limited individual freedom. As Walters (Reference Walters2004) wrote, “in reality […] this freedom can sometimes be compromised by the pressure of control toward what professionals consider to be a ‘good death'” (p. 406).
This paradox of control and freedom coexisting in the “good death” discourse recalls Foucault's notion of governmentality, or “governing through the freedom of subjects” (Martin et al., Reference Martin, Leslie and Minion1999, p. 81; italics in original). Discipline in governmentalism is not achieved by traditional hierarchical power or surveillance; instead, discipline is achieved by creating, through discourse, boundaries that limit and constrict choice, while simultaneously promoting individual agency and free will. Within the “good death” discourse, dying individuals are encouraged—even coerced—to be aware, autonomous agents (Zimmermann, Reference Zimmermann2012) who make choices about their dying experience. But their repertoire of sanctioned choices is strictly limited; their power, illusory. In this view, the “good death” is a controlling, disciplinary discourse that promotes and rewards a particular way of dying or caring for those who are dying (Broom & Cavenagh, Reference Broom and Cavenagh2010; Clarke, Reference Clarke2006; Goldsteen et al., Reference Goldsteen, Houtepen and Proot2006; Frith, Reference Frith2013; Hart et al., Reference Hart, Sainsbury and Short1998; McNamara et al., Reference McNamara, Waddell and Colvin1994; Seale, Reference Seale2000; Reference Seale2004; Semino et al., Reference Semino, Demjen and Koller2014; van Brussel & Carpentier, Reference van Brussel and Carpentier2012; Walters, Reference Walters2004; Watts, Reference Watts2012; Zimmermann & Rodin, Reference Zimmermann and Rodin2004; Zimmermann, Reference Zimmermann2007; Reference Zimmermann2012). The “good death” discourse paradoxically constrains individual freedom by tacitly rewarding some choices over others and by dictating a certain way to die (Goldsteen et al., Reference Goldsteen, Houtepen and Proot2006; Semino et al., Reference Semino, Demjen and Koller2014; Zimmermann, Reference Zimmermann2012). It “establishes stability in dying but limits spontaneity” (McNamara et al., Reference McNamara, Waddell and Colvin1994, p. 1506), acting as a form of social control (Hart et al., Reference Hart, Sainsbury and Short1998).
Within increasingly secularized Western society, in which individual autonomy is a central value, the “good death” may no longer be “good enough” (McNamara, Reference McNamara2004, p. 929). The denial of dying represents the culmination of control and of autonomy, the apex of a neoliberal society in which “death may be purchased and consumed, valued and depreciated, managed and administered in a fashion entirely consistent with any other commodity or bureaucratic transaction under ‘free market' principles, with ever-increasing superficiality and lack of lasting meaning or significance” (Bendle, Reference Bendle2001, p. 353). The dying process seems to have been rendered insignificant and irrelevant and has therefore been discarded. Though death itself is openly discussed, the dying process is so negatively characterized or perceived that it is now avoided entirely.
Contemporary Western society, once a death-denying society (Aries, Reference Aries and Weaver1981; Zimmermann & Rodin, Reference Zimmermann and Rodin2004), is now increasingly a death-accepting, but a dying-denying, society. Increasingly, the media discourse on death and dying has marginalized the dying process, rendering it invisible. Surely, this negative, controlling discourse is incomplete: it presents an unbalanced and negative view of death and dying that marginalizes such positive concepts as hope, joy, and freedom. Positive concepts were alarmingly absent from the reviewed literature, so that the “good death” is predicated not on the presence of positive symptoms but on the absence of negative ones. The questions to ask now are: How will end-of-life care be shaped by this dying-denying culture? Where does this notable absence of a dying process leave the “good death”? Has the end-of-life care community failed to provide dying experiences that help to shape a positive discourse of dying? And, perhaps most importantly, how and where do we begin to reclaim dying, to shape a positive discourse of dying?
LIMITATIONS
This review has several important limitations. First, the literature search was restricted to electronic databases, which may have compromised our sample. A librarian may have performed a more comprehensive literature search, but we were unable to obtain the services of a librarian. The search was also restricted to the English language, which may contribute to language bias (CRD, 2008). These literature search limitations may have altered the substantive quality of the review.
This review was completed by one individual, which poses a potential threat to rigor. My data analysis tables and drafts of this review were, however, reviewed by my academic supervisor, who contributed advice and expertise to this review.
IMPLICATIONS FOR RESEARCH, POLICY, AND PRACTICE
To remain socially relevant, end-of-life care ideally must reflect the needs of the dying individuals and enact them through practice and policy. The findings of this literature review suggest that more research needs to explore patient perspectives of dying experiences, rather than the experiences of healthcare providers, and to inform care decisions that translate more effectively to practice and meet the needs of the individuals who are dying. In particular, research is needed to explore the preferences of dying persons within diverse cultural and geographic areas, as well as individuals dying of chronic diseases, including Alzheimer's and other dementias.
Most importantly, however, research must explore the positive aspects of the dying process, to reframe and reclaim dying, to move from a discourse that privileges the absence of negative aspects to one that privileges the presence of the positive aspects of dying. Dying may be an important part of living. Framing it as an unnecessary and meaningless part of life may have damaging consequences for individuals, for families, and for society. Denying dying may destroy individuals' opportunities to grow, to find meaning, hope, and joy, and to live fully until they die. Denying dying may preclude families from creating significant moments and from forming important memories to carry into subsequent generations. For society, denying dying and precluding the positive, meaningful aspects of dying shapes and helps to perpetuate a discourse of death and dying that is unbalanced, alarmingly negative, and increasingly fragmented.
