Abstract
Western society is in an era of death awareness, its most recent salience: A Positive Death Movement. This article traces the evolution of American death culture by describing key periods of change, starting with the 1700s and going through the 21st century, and overviews contemporary movement scholarship. Experts suggest our current epoch is one in which a diffuse collection of individuals and organizations advocate for approaching death differently. Movement proponents aim to modify society’s “conventional” death framework, which is characterized as medicalized, institutionalized, impersonal, and lacking psychosocial emotional preparation and engagement.
Introduction
The underlying “death system” (Kastenbaum, 1973, 2015) that informs personal, communal and societal practices and policies around death varies over time and according to particular conditions (Corr & Corr, 2012), but the topic is always inescapably relevant—a material and ongoing reality of life. Indeed, death is a universal human experience. The following article overviews key periods of change in American death culture, starting with the 1700s, then discusses tenets of the currently underway Positive Death Movement, and closes with a literature review of movement scholarship.
American Death Culture
From the 18th century to the mid-19th century, death was an ever-present circumstance of day-to-day living, especially for the young (Jackson, 1977). In this era, couples could expect to lose two or three children by the age of 10 years (Stannard, 1974, p. 465). The Revolutionary and Civil Wars also occurred during this period; infectious diseases were commonplace, all of which caused premature death (Samuel, 2013). Funerary and bereavement practices occurred in the home; a person’s death was known and felt by the rest of the community. Gravestones from this time period emphasize life’s brevity and the physical body’s mortality (Jackson, 1977).
After the Civil War, an era known as the “dying of death” began (Farrell, 1980; 1982; Jacobs, 1899), during which the sting of mortality was removed from daily life through several means (Laderman, 1996). First, death care transitioned from the home to the commercial arena (Laderman, 1996). Professional undertakers and funeral directors were paid to take “custody of the corpse” (Howarth, 2016, p. 15), extracting this function from female domestic work (Zlomke, 2013), in part, as justification to bolster public health (Olson, 2018). New techniques of embalming and beautification of cemetery environments created less traumatic, even pleasant, experiences for the bereaved (Haber, 1982). Religious liberalization, too, shifted emphasis away from hellfire and damnation toward finding joy in life and securing rewards in heaven (Christian, 2017).
Starting with the “Roaring Twenties,” a separation between the living and the dead began in earnest, which continued to accelerate with each decade thereafter, until the 60s and 70s (Jackson, 1977; Staudt, 2008). World War I and the Flu Epidemic had just ended (1914–1918 and 1918–1920, respectively) and 1920s America was eager to move beyond hard times and enjoy technological advances, including electrification and the rise of the automobile, cinema, and radio (Roos, 2020). Given scientific and medical progress, the sick and dying were increasingly being treated in hospitals, where interventions were delivered. When they did expire—often from chronic illness and old age—professional undertakers dealt with remains. Cemetery management also changed: “Perpetual care” burial meant that loved ones were no longer responsible for tending grave sites; burial plots were increasingly depersonalized (Jackson, 1977). These circumstances, coupled with increased geographic mobility, added social distance between the living and the dead, which was felt within families, communities, and across society.
Scholars and popular media alike assert that “death denial” or treating death as a taboo topic was the dominant cultural sentiment for the first half of the 20th century (Ariès & Weaver, 1981; Becker, 1973; Gorer, 1955; Jackson, 1977; Reinhold, 1974; Samuel, 2013; Staudt, 2008). Others argue that denial and acceptance occurred simultaneously (Corr, 2014). Outlier dissenters contend that focusing on the “taboo” explanation is distorted and lacks utility; it is too flat and glorifies a concept that closes, rather than opens, inquiry (Lofland, 1978). Parsons, for example, believes that Americans have institutionalized scientific values; since death is a scientific fact, it cannot reasonably be avoided or denied (1963). Instead, death, like other deeply personal topics (e.g., sex, finances, and religion) is a private affair and therefore had not shown up in conversation within polite society (Parsons, 1963). In later work, Parsons reasoned that a natural posture of “instrumental activism” fuels the desire to control death and its “disrupting effects on personal and social life” (Lidz, 1995, sec. Instrumental Activism, para. 1). Lofland (1978), another dissenter to the blanket concept that Americans were death deniers, thinks the topic lacked a public discourse due to changing conditions; specifically that the dying process became prolonged, bureaucratized, and removed from society.
Regardless of whether the death taboo explanation is accurate or useful, Feifel’s The Meaning of Death (1959) is credited with the first effort to break the status quo of silence, calling for more systematic studies of death (Staudt, 2008). Scholars agree that after Feifel’s publication, material on and related to death burgeoned (Feifel, 1990; Hoefler, 1994a; Jackson, 1977). The 1960s ushered in a new academic discipline of “thanatology” in which journals were created, as were new university courses and organizations that focused exclusively on death studies (Doka, 2003; Feifel, 1990). Seminal books from this decade include Mitford’s American Way of Death (1963), an exposé of the funeral industry, and Elizabeth Kubler-Ross’ On Death & Dying (1969). Kubler-Ross’ book achieved critical and popular notoriety and is generally considered the beginning of the Death Awareness Movement in the United States—a time when “the needs of the dying [were brought] back into public discourse” (Staudt, 2008, p. 8).
Starting in the 1970s, death discussions became very public, showing up in Congress, medical associations, courtrooms, state legislatures, a Presidential commission, and in major religious institutions. In 1972, a U.S. Senate Special Committee on Aging initiated a series of public hearings on “Death with Dignity,” claiming “there should be public discussion and greater public understanding of issues related to death and dying in the United States today” (Death with Dignity: An Inquiry Into Related Public Issues, 1972, p. 4). These hearings targeted exploration of a “right to die,” that is, to refuse life-sustaining medical services (passive euthanasia) and broached then brand-new concepts of a “living will” and hospice care. Although leaders of these hearings made clear their express opposition to active euthanasia, some testimony argued for the normalization of aid-in-dying. Discussions also covered the definition of death and establishment of an “Advisory Commission on Health Science and Society.”
Dr. Kubler-Ross’ testimony charged that heroic life-prolonging efforts often result in elongated suffering. She also asserted that “Medicare and Medicaid tend to enhance institutionalization” while the dying overwhelmingly wish to die at home (Death with Dignity: An Inquiry Into Related Public Issues, 1972, p. 16). The following exchange reveals early considerations that would eventually lead to a shift in policy, thus allowing federal monies to support in-home care for the dying and their families: Senator Church: In other words, if the program [Medicare and Medicaid] were modified in such a way that the financial help that is now given to pay for the hospitalization, or the nursing care and treatment, if in the alternative, money could be available to promote care in the home, that this would be a great step forward? Dr. Ross: A tremendous step, not only to the patient but also to the family.(Death with Dignity: An Inquiry Into Related Public Issues, 1972, p. 16)
Specialized care for the dying that focuses on comfort and mitigation of suffering (rather than a cure), started with Dr. Cicely Saunders in England during the 1960s; the first U.S. hospice to offer such services opened in 1974 (Hoefler, 1994a; Lukashok, 1990). Medicare funding for these hospice programs—first conceived during the public hearings described above, eventually became available via the Tax Equity and Fiscal Responsibility Act of 1982 (Francis, 2019; Lukashok, 1990). Years later, in 1986, state Medicaid programs were also given the option to include hospice coverage (Understand Hospice, 2016). States now must offer hospice benefits for a minimum of 210 days, which is roughly equivalent to 7 months (Centers for Medicare & Medicaid Services, 2016).
The rest of the 1970s was heavily absorbed with right-to-die activities. In 1973, the American Medical Association (AMA) passed a Death with Dignity resolution (“AMA Passes ‘Death with Dignity’ Resolution,” 1973). Terminally ill patients (or their families, if the patient was unconscious) could sign a statement requesting that they be allowed to die and not be sustained by artificial means. The statement could further indicate a desire for drugs to be administered that would mitigate suffering, even if those drugs hastened death. Scholars suggest that this was a significant milestone in American medicine, perhaps “the first time doctors had directly confronted the moral and legal consequences of artificially prolonging life” (Samuel, 2013, p. 88).
In 1976, the right to die was formally tested, established, and defined in a New Jersey state court (Wright, 2017). The parents of Karen Ann Quinlan, who had lapsed into a persistent vegetative state, were ultimately granted the right to withdraw ventilator support after a legal battle with the hospital. Thereafter, state legislation proliferated regarding living wills. In the time since the Quinlan case, state courts have further legitimized refusal of medical treatment on the grounds of human autonomy and self-determination, as well as liberty and privacy (Hoefler, 1994a). Eventually, the U.S. Supreme Court, in the 1990 Cruzan case, also recognized the right to die through refusal of artificial nutrition and hydration (Paris, 1992; Pope, 2018b). Soon thereafter, the federal Patient Self-Determination Act became law (1991), requiring all hospitals that receive Medicare and Medicaid financing to inform incoming patients about their rights to refuse life-sustaining treatment and create advance directives (Hoefler, 1994a).
In 1979, President Jimmy Carter appointed inaugural members to the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical Research. This body would go on to generate numerous publications of import, including Defining Death (1981) and Deciding to Forego Life-Sustaining Treatment (1983). The Commission generated model legislation for states, known as the Uniform Determination of Death Act (UDDA), which defines death in technical terms, according to cardiorespiratory and neurological criteria, while deferring to current medical standards (Truog et al., 2018). States have since passed this legislation, but philosophical inquiry, debate, and legal battles continue (Pope, 2018a; The President’s Council on Bioethics, 2008; Veatch, 2019), thus leading modern scholars to call for revision of the UDDA (Lewis et al., 2020). In July of 2021, the Uniform Law Commission approved the creation of a new UDDA drafting committee, based on the recommendation of a study group (Pope, 2021).
Despite the established separation of church and state, religion has heavily influenced deliberations about death and the right to die, especially Catholicism (Hoefler, 1994a, 1997). A statement made by the Pope in the 1950s (Pius XII, 1958) made clear the distinction between ordinary, necessary life-sustaining measures versus extraordinary, unnecessary measures, a concept that first originated with 16th century Catholicism (McCartney, 1980; Sullivan, 2007). The Church’s subsequent Declaration on Euthanasia (1980) reaffirmed this perspective, adding to it more precision, by way of considering proportionate versus disproportionate benefits of treatment (Paris & Poorman, 1995). Case law, including the precedential Quinlan ruling, consistently reference such Catholic distinctions (Hoefler, 1997). Importantly, the Presidential Commission’s influential publication, Deciding to Forego Life-Sustaining Treatment (1983), identified these approaches and attributed them to the Catholic Church. The report encouraged use of the latter distinction in public policy: “Clarity and understanding in this area will be enhanced if laws, judicial opinions, regulations, and medical policies speak instead in terms of the proportionate benefits and burdens of treatment as viewed by particular patients” (1983, p. 89). Notably, the final report fully incorporated the Vatican’s Declaration on Euthanasia (1980) in its appendices, alongside the AMA’s official statement.
Fast forward to the 21st century and the era of death awareness is manifesting in what current nomenclature terms the Positive Death Movement. A social movement consists of “social and cultural responses to prevailing political and economic dynamics ... in a given place and at a given time” (Chesters & Welsh, 2010, p. 2). Clearly, a push toward death-positive consciousness is manifesting anew, across social, governmental, and technological arenas. Contemporary gatherings, known as Death Cafés and ‘Death Over Dinner’ events, are respectively seeking “to increase awareness of death with a view to helping people make the most of their (finite) lives” (Miles & Corr, 2017, p. 153; What Is Death Cafe, n.d.) and “transform this seemingly difficult conversation into one of deep engagement, insight and empowerment” (Death Over Dinner, n.d., para. 1). A new role, an End-of-Life Doula (EOLD), is also on the rise, providing non-medical companionship to the dying and their families (Rawlings et al., 2019; 2020a; 2020b). The expansion of Medical Aid In Dying (MAID) policies within the United States similarly reflects evidence of the movement (Doka et al., 2011; Francis, 2019; Hoefler, 1994a). Another means of legally accelerating death, known as Voluntarily Stopping Eating and Drinking (VSED), is becoming increasingly well-known and studied as a viable end-of-life option (Quill et al., 2021; Shacter, 2017; Sutherland, 2018). The movement also involves increased attention to green burial options, including new forms of body disposition, such as water cremation (i.e., alkaline hydrolysis) and human composting (i.e., natural organic reduction), which are more environmentally friendly options than standard burial and cremation (Carpenter-Boggs, 2020; Olson, 2014, 2016).
Contemporary Movement Scholarship
Naming conventions for the movement vary across publications, yet scholars largely agree upon both the factors that catalyzed this phenomenon as well as its distinct characteristics. Death-Positive or Positive Death Movement are frequently used terms (Gooden, 2020; Leland & Yalkin, 2018); previous scholars have also referred to this era as the Happy Death Movement (Hoefler, 1994a, 1994b; Lofland, 1978). Yet others frame the phenomenon, more generally, as falling within the Death and Dying Movement or as the ongoing expression of the Death Awareness Movement (Doka, 2003; Stillion & Attig, 2014; Walter, 2020). Regardless of naming convention, the consensus is that a movement has begun and is underway, most significantly catalyzed by two events: (1) Dr. Saunders’ initiation of the hospice model of care in the 1960s and (2) Dr. Kubler-Ross’ book, On Death and Dying (1969). Numerous scholars perceive specific initiatives—such as those for hospice and palliative care, the right to die or “natural death,” which are sometimes referred to as individual movements in their own rights (e.g., McInerney, 2000)—as related manifestations of the broader Death Awareness Movement (Seymour, 1999). All seek “to experience death and loss with greater dignity, control, and social support” (Layne, 2006, p. 611). Lofland’s description of the movement entails: A sprawling, diverse, multi-structured, diffuse assemblage of persons, acting independently and as parts of organizations, engaging in a multiplicity of largely uncoordinated activities and possessing varying degrees of consciousness relative to their participation in a movement … concerned with promoting a change in American society with regard to its beliefs … its emotional responses … and its legal and normative practices relative to death and dying. (1978, pp. 56–57)
Proponents continue to criticize death’s medicalization, rally for person-centered care at home, and perceive dying as a path to psychosocial development and validation (Francis, 2019).
The movement problematizes (Blumer, 1971) and rejects “conventional” (Lofland, 1978, p. 71) death (i.e., “death denial” and its consequences, e.g., a schism between the living and dying, lack of meaningful end-of-life communication, medicalization of life [and death] in hospitals that rejects what is natural, along with pricey and “barbaric” funeral practices [Lofland, 1978, p. 72]) and advocates for education, rearrangement and legislation of dying. First, people should “stop avoiding death and to ‘accept it’ both intellectually and emotionally” (Lofland, 1978, p. 61). Feifel (1990) emphasizes that dying is a human affair, not just a biological one—the quality and depth of a life, not just its length, matter. The movement also lauds positivity and expressivity; self-improvement and growth are available for the dying and their loved ones during this process, achievable, in part, by the authentic relay of emotions.
Feifel, the early catalyst for death studies, asserts that anticipation of death meaningfully informs how one behaves in the present: “Acceptance of personal mortality is one of the foremost entryways to self-knowledge” (1990, p. 541). Accompanying ideology adamantly rejects “death denial” and insists on widespread and transdisciplinary death education: The pertinence of death education is not only for those … in the health care professions who deal with dying, death, and bereavement but for all in the home, school, religious institution, and general culture. The mandate is to alter cultural perspective, not just achieve a palliative concern. (Feifel, 1990, p. 541)
Movement proponents also find utility in naming an imperfect status quo (i.e., “death denial” [Lofland, 1978; Walter, 2017]) as a contrast to a celebrated ideal (i.e., “death talk” [Lofland, 1978; Troyer, 2019; Walter, 2017]). Further, the dying should be cared for in special venues that target individualized care or be supported at home. And finally, laws should provide power to an individual actor, so a person can determine the care to be received under dying conditions (e.g., a living will).
Scholars argue the movement arose and is perpetuated as a result of multiple factors; one of which is a shift in demographics. First, an increase in the elderly, in terms of both population numbers and their relative proportion in society, intensified the study of aging and thereby a focus on dying and death (Doka, 2003; Fox, 1981). Many of the aged are also chronically ill (Seale, 2000) and/or fall within the Baby Boomers’ generation and are thereby experiencing the illness and death of loved ones, increasing awareness of their own mortality (Richards et al., 2020). Finally, given population growth, more people in society are also dying than ever before, thus generating a “new demography of death” (Leeson, 2014, p. 1).
Other factors motivating movement actors include existentialism, timing and culture. Heightened existential anxieties stem from comprehending the fragility of life and humanity’s proximity to death (Doka, 2003; Staudt, 2008). The nuclear age instigated death awareness; even when that threat dissipated, the Vietnam War kept the threat of death on the minds of American citizens. Social unrest and the assassination of political leaders maintained these death anxieties; worldwide terrorism continued the theme (Staudt, 2008). The AIDS epidemic, along with fears of environmental demise as a result of Anthropocene, the geological epoch in which human activity overwhelms the Earth’s natural processes and negatively impacts the planet (Crutzen, 2006), add to the list of socio-historical events that perpetuate death awareness. The global COVID pandemic is the latest event that placed death on center stage. The timing of the movement’s inception was also aligned with broader cultural sentiments of that period, such as esteeming all things natural, fostering an open and sharing disposition, and lauding individual rights and personal autonomy. Lastly, Doka et al. (2011) identify the movement as filling a cultural void in a society that shifted away from religiously based understandings and practices concerning death. Individuals were looking to make meaning of their lives (and impending deaths) (Galtung et al., 1980)—sometimes through “spirituality” (Doka & Morgan, 2016). Structured bereavement initiatives, such as professional grief counselors and support groups, were also on the rise (Worden, 2018), as were popular books encouraging the normalization of grief (e.g., Beyond Grief [Staudacher, 1987]).
Institutionalization and a general dissatisfaction with end-of-life care are another set of concerns provoking the movement. Complaints abound that death has been over-medicalized, with the original hospice philosophy abandoned to social policy (Pine, 1986). Critics explain: Given regulatory burden, hospices and their workers are no longer able to provide holistic, person-centered care that offers round-the-clock presence for the dying individual and their families (Abel, 1986; Wyatt, 2020). Further, studies indicate that most people prefer to die at home, but since the second half of the 20th century, hospitals have been where death occurs (Bowling, 1983; Gomes et al., 2013; Warraich, 2017). Despite the cadre of workers in the death system (Corr, 2014; Kastenbaum, 1973, 2015), experts agree that end-of-life care is still lacking; there are many opportunities to improve the quality of life for dying individuals and their families (Committee on Approaching Death: Addressing Key End of Life Issues; Institute of Medicine, 2015).
Literature regarding the social movement for death positivity is diffuse, much like manifestation of the movement itself. Given its decentralized nature, the phenomenon has understandably been labeled with varying terms. In the literature review below, a broad search using a wide variety of movement nomenclature was employed. In addition, embedded and forward citations were explored for those resources that either examine the movement itself (e.g., Doka, Lofland, Hoefler, and Walter) or credit the movement while studying its activities and impacts (e.g., Koksvik). The goal was exploratory, aiming to catalog and better understand the scope and content of literature referencing the movement, as opposed to its hallmark, identifiable components.
Many scholars have referenced the Death Awareness Movement in their work. The overwhelming majority focus on bereavement care and grief (Brabant, 2008; Doka, 1996; Klass, 1982; Kwilecki, 2009; Robson & Walter, 2013; Sköld, 2020; Walter, 1995, 2019). Another researcher (Edgley, 2003) built on seminal work by Glaser and Strauss (1966), analyzing treatment of the dying individual in medical settings. A wide variety of scholars in other disciplines cite the movement in their research, for example, cross-cultural studies (Metcalf & Huntington, 1991), psychology (Caruth & Lifton, 1991; Feifel, 1974, 1990), family and aging (Callahan, 1995), philosophy (Momeyer, 1982; Teodorescu, 2019), even theater production (Curtin, 2017) and therapeutic recreation leisure education (Stensrud, 1993). Most scholars are Western, but a few have applied this framing to other nations, including Nigeria and Pakistan (Okafor, 1993; Shakil & Yousaf, 2015). Russia hosts a death social research laboratory; one of its scholars has also analyzed the movement’s trajectory (Mokhov, 2019).
Several religion scholars have addressed the movement more thoroughly. Bregman (2003) wrote a book, Death and Dying, Spirituality, and Religions: A Study of the Death Awareness Movement, in which she addresses how religions influenced new forms of spirituality that arose within the movement (Quartier, 2006). Subsequent publications apply these insights to undergraduate death education (Bregman, 2008; Goodine, 2017) and further expound on spirituality (Bregman, 2006).
One especially prolific death scholar and sociologist from the United Kingdom, Tony Walter, consistently mentions the movement throughout his publications, addressing topics such as the manner of death (1996), consequences of talking about death (2017), and death theory (2019) (in addition to his writing on bereavement, cited above). Walter has written two books, The Revival of Death (1994) and Death in the Modern World (2020), which directly address the movement, including its thought-leaders, ideas, and chronology. Walter summarizes the essence of the movement in the following quotes: First, “as a whole [the movement] is a response to the physical, psychological, social and spiritual risks caused by modern medicalized, bureaucratic dying. Movement members try to create a more humane way of dying” (2020, p. 101). Second, “The death awareness movement identifies risks to the quality of dying induced by modern bureaucratic health care and seeks to manage them through humanizing end-of-life care, and injecting post-material values of personal expression, personal autonomy and personal spirituality” (2020, p. 102).
Walter also critiques the movement as being largely comprised of privileged individuals, echoing another scholar who described most of its leaders as “middle-class college educated white women” (Francis, 2019, p. 97). Walter states that these “well-off baby boomers in the West” are focused on self-actualized deaths and are thereby disconnected from other segments of society who are concerned with survival and avoidance of premature death (Walter, 2020, p. 102). The author’s sensitivity to societal differences, including class, race, and gender has been celebrated by other scholars (e.g., Doka, 2020).
Few scholars who give credence to the Death Awareness Movement’s impact have studied policy, specifically. However, Borgstrom and Walter invoked the movement to frame an analysis of English policy discourse on end of life choices (2015). An American political scientist, James M. Hoefler, wrote a book, Deathright: Culture, Medicine, Politics And The Right To Die (1994), devoting a lengthy chapter to ‘Social Activism and the Happy-Death Movement.’ Hoefler introduces Lofland’s definition of the movement (presented above) and describes grassroots mobilization originating from health professionals and patients alike (Clay, 1995). He concludes that state courts and legislatures have led on right-to-die issues, a topic he studies further in a subsequent paper (Hoefler, 1994b).
A small corpus of recent scholarship has begun using the death-positive or positive-death terminology to reference movement activities of-late. Richards et al. study the rise of Death Cafés, finding their growth to be a “part of a wave of rising death awareness,” which was noted by some café organizers as part of the “death positive” movement (2020, p. 12). These authors discovered that despite widely varied geographical locations, Death Café organizers often project similar messaging, deeming the “death taboo” as psychologically harmful, whereas open communication about death is framed as beneficial (Richards et al., 2020). Another scholar, Chabot (2019), suggests that libraries have the opportunity to play a supportive role in the movement, through programming, community engagement, and resources.
Other scholars emphasize the link between death positivity and modernity’s neoliberalism (Mokhov, 2019), a term used to describe the spread of capitalism and consumerism (Thorsen, 2010). Koksvik, for example, believes “current death positivity is intimately linked to identity politics, lifestyle industries and commercial interests” (2020, p. 952). The scholar argues that this movement “furthers a neoliberal discourse of individual responsibilization” that fits into expected features of postmodern life (Koksvik, 2020, p. 952). The author draws these conclusions through analysis of two Positive Death Movement initiatives: (1) a book by Michael Hebb (2018), founder of “Death over Dinner”, and (2) online videos generated by Caitlin Doughty, funeral director and founder of “The Order of the Good Death”—a collective addressing “a death phobic culture” (Koksvik, 2020, p. 957; The Order of the Good Death, n.d.). Koksvik ultimately determines that the movement lauds “death talk” as beneficial and opposes “death denial.” Like other scholars, Koksvik agrees that “death denial” serves a useful purpose, giving the movement a simple mantra against which proponents may contrast its more laudable goal of “death talk” and expressivity.
Psychology is one arena that has explored mortality awareness extensively, ostensibly doing so without express association to the larger movement itself. Within this domain and specialized focus area, Terror Management Theory (TMT) (Greenberg et al., 1990; Pyszczynski et al., 1999, 2003; Rosenblatt et al., 1989; Solomon et al., 2015) is perhaps the best-known and established framework. This theory posits that death anxiety, explicitly and implicitly, motivates human behavior and is moderated by self-esteem and cultural world views (Solomon et al., 2015). Interestingly, TMT founders met and began work together in the late 1970s during their doctoral program; after collectively discovering Becker’s work (1973), their development of TMT began in earnest (Kirkus Reviews, 2015; Solomon et al., 2015). Another accomplished thinker, writer, and psychiatrist (Yalom, 2008a; 2008b) narrates the benefits of death anxiety, explaining that this fear may trigger a fuller appreciation of the present and enhance one’s connection to others. The final and most lengthy chapter of “Dr. Yalom’s much hyped book” (McGiffin, 2009, para. 3) gives advice for therapists dealing with clients on these issues. Notably, Yalom advises caregivers to first address their own mortality as a fundamental means of equipping themselves to serve others. More recently, Levasseur et al. (2015) crafted a valid and reliable multidimensional mortality awareness measure, concluding that “successful integration into a world view of death inevitability is associated with psychological benefits” (2015, p. 334).
Conclusion & Future Directions
This article presents a non-systematic literature review to discern the portfolio of works that specifically mention the movement for death positivity. Research publications reference the movement across many disciplines, taking for granted that a social movement is underway, but sparse research directly examines the movement itself. Bereavement care and grief scholars, by far, give the most credit to the movement for establishment of their field. Doka and colleagues (Doka, 1983, 2003, 2009; Doka et al., 2011) examine the factors that triggered and perpetuate the movement. Lofland (1978) examines the movement’s hallmark characteristics, while Hoefler (1994a) further describes the movement’s actors and activities. Walter theorizes that the movement is ultimately “a post-material response to a risk society” (2020, p. 101) and Koksvik (2020) examines movement artifacts to argue that the movement has neoliberal tendencies.
Future research could better leverage social movement frameworks to empirically study movement contours and effects. Measuring changes in public policy, for example, demonstrates the effects of social movements since “all movements tend to make demands on the political system” (Porta & Donatella, 2006, p. 229). Effects may occur throughout the policy-making cycle, including agenda setting, policy formation, decision-making, implementation, and evaluation (Sabatier & Weible, 2014). Examination of the proliferation of Medical Aid in Dying policies as manifestation of the Positive Death Movement is but one example of the potential for empirical work in this domain.
Researchers may also use this article as a current profile for the death positivity movement in America, as a source of comparison for other regions. Although this article cites research from other countries, the nature of this movement’s presence and impact in other geographical areas is yet unclear. Mexico, for example, has long celebrated a national holiday that honors deceased relatives, known as Day of the Dead. This custom suggests that the nation likely has a different baseline relationship to death, which would thereby influence its movement manifestations. Another relevant example comes from Southeast Asia, where families often elect to protect a terminally ill family member from knowledge of their diagnosis—as a sign of respect (Coolen, 2012). This practice is in direct opposition to the foundational principal of autonomy, lauded in Western bioethics (Beauchamp & Childress, 2001) and does not comport with the movement principle that upholds death awareness and engagement as a means of psychosocial emotional growth. Given that social movements occur at a given place, in a given time, it is important to contextualize happenings according to specific location.
Perhaps most pressing is research that prioritizes the intersection of the Positive Death Movement with current societal crises. At the time of this writing, the coronavirus is responsible for over 1.1 million excess deaths in the United States (National Center for Health Statistics, 2022); heightened mortality awareness is unavoidable. How is this reality impacting the movement’s trajectory? Further, prior scholars have cautioned that this movement has often been for privileged segments of society (Francis, 2019; Walter, 2020). Sociological end-of-life studies could better focus on racial, ethnic, and socioeconomic disparities (Nelson & Spencer, 2021), especially given growth of the Black Lives Matter Movement. As one example, popular media and recent scholarship consider how definitions of a “good death” compare across inequitable social groups (Beech, 2020; Cain, 2021; Cain & McCleskey, 2019).
Research opportunities abound as diffuse movement actors engage death and dying in new ways. Examples presented in this article include communal functions that place death center-stage (i.e., Death Cafes and Death Over Dinner events), development of end-of-life doula services, passage of Medical Aid in Dying legislation, increased attention toward a little-known end-of-life option, Voluntarily Stopping Eating and Drinking, and new possibilities for body disposition, such as human composting and water cremation. Also mentioned was revision of the Uniform Determination of Death Act; future state governments will likely consider whether and how to modify statutes and regulations governing the definition of death for their residents.
In sum, a social movement for death positivity is underway. Its hallmarks include lauding death and the dying process as a non-medical, natural event, which should be personal, de-institutionalized, and engaged in the psychosocial emotional landscape. Feifel’s initial call-to-action incited the scholarly community to create a new field of study that perturbed the collective public silence about death. Health practitioners, Saunders and Kubler-Ross, fostered increased attention to this new domain by creating service offerings and guidance for the public. Policymakers took note and further amplified attention to the topic through national hearings. The Catholic Church, the largest unified religious institution in America, likewise contributed numerous treatises on end-of-life matters. Subsequent action across all branches of government defined rights, created definitions, and provided access to new services for the dying and their families. Movement activities are ongoing and yield many opportunities for research.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
