An App to Remind You You’re Going to Die? On Death Positivity

How Death-Positive Activism Has—and Hasn't—Changed in 40 Years

I was a graduate student of Lyn Lofland at the University of California, Davis, in the 2000s, and by the time I came to study with her, her scholarship had moved away from death and dying. My interests were different too, rooted primarily in the sociology of families and emotion, so when we talked about The Craft of Dying, it was for other purposes. I remember conversations about role performances in the late-modern West, for example, and her use of the term “mixed type” to describe the happy death movement, but not much beyond that.

It wasn’t until 2017 that I reread The Craft of Dying with an eye toward death studies. I was beginning a project on end-of-life doulas and death midwives, and the text blew me away. Lyn’s analysis of death activism read as though it could have been written yesterday, and I wondered how that could be. In light of the happy death movement’s ostensible achievements—the canonization of Elizabeth Kübler-Ross’s work, for example, or the 1980s institutionalization and expansion of hospice—how is it that today’s death-positive movement resembles so closely its progenitor of 40 years ago and yet feels new to its participants? In the discussion that follows, I outline a few preliminary answers to that question, identifying factors that might help us to understand the movement’s continued resonance and perennial challenges. I consider, too, what we as scholars and activists might take from The Craft of Dying going forward. 

Like its 1970s counterpart, today’s death-positive movement is diffuse and uncoordinated, comprising individuals and organizations working in different arenas with separate but overlapping aims. At death cafes designed to raise awareness about mortality, strangers gather to chat about death over tea and cake. Weekend-long death salons offer death-themed talks, performances and foods. Courses in end-of-life doula care and death midwifery are populated by women interested in facing their own mortality, preparing to care for aging loved ones, or hoping to start their own alternative death care businesses. Entrepreneurs in the death trade now offer home funerals, green burials and a growing number of disposition alternatives. Consumers can buy apps for their phones that record their end-of-life preferences or remind them at regular intervals that they’re going to die. And the death with dignity movement marches on, in the last five years adding California, Colorado, Hawaii, Vermont, and Washington, D.C., to the list of U.S. jurisdictions with medical aid in dying statutes. 

Participants in the contemporary death-positive movement adhere to two of the basic tenets that Lofland identified: if we are to die better, its participants suggest, we must talk about it and legislate it. These efforts look much as they did 40 years ago, with the caveat that they now have greater precedent and, thus, a longer tradition to draw from. For example, death-with-dignity advocates now can wield data from jurisdictions where physician-assisted suicide is legal, arguing that “Medical aid in dying has been safely practiced in six states for a combined 40 years … [and not a] single case of abuse or coercion nor any criminal or disciplinary charges have been filed” (Compassion and Choices, 2017). Similarly, expressivity is assumed to be a necessary feature of the good death and healthy grief. For example, three of the eight tenets that define “The Order of the Good Death”—a group that showcases contemporary death activism—are premised explicitly on communication:

2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition. […] 

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes. [Order of the Good Death, 2018]

At the same time that they emphasize choice, courses in alternative death care also tend to promote an idealized, “natural death.”

Scholarly and psychotherapeutic understandings of grief have moved away from the stage-based model, healthy/pathological binary, and notions of “closure” that Lyn describes (Rothaupt and Becker, 2007). Nonetheless, talking about death is still assumed to be a fundamentally good thing. Robert A. Neimeyer, a widely known scholar of grief therapy, spoke about death salons in a piece for The Atlantic: “Whether frank and courageous conversation about death and loss takes place in a classroom, therapist’s office, church or temple, or the local Starbucks . . . my guess is that it can help us explore and articulate frameworks of meaning for negotiating the often unwelcome transitions that confront us all” (Hayasaki, 2013). 

The third tenet that Lofland identifies—the rearrangement of death and dying—manifests differently today than it did when The Craft of Dying was published, in part because of the availability of hospice. As Lofland notes, efforts in the United States to relocate death to private homes or freestanding hospices were, at the time she was writing, “only minimally successful.” More challenging to pioneers than the lukewarm reception of medical professionals, though, were the financial logistics of hospice operation. In the 1970s most hospices were small, grassroots organizations that relied heavily on volunteers. Their limited budgets were composed of grants and donations, which made for a tenuous existence (Abel, 1986; Livne, 2014). By the end of that decade, advocates began framing hospice as a cost-effective alternative to mainstream care, and in 1982, Congress approved the Tax Equity and Fiscal Responsibility Act (TEFRA), granting Medicare coverage for hospice. This catalyzed the expansion of hospice, which now attends to approximately one-third of all deaths in the United States (National Hospice and Palliative Care Organization, 2018).

Rather than advocating for the spatial reorganization of death, then, today’s death-positive activists argue for the continued diversification of end-of-life options and seek to educate people about their choices. This orientation to end-of-life care is evident in the emerging roles of end-of-life doulas and death midwives, whose work it is to co-construct and help carry out each client’s particular vision of a good death or disposition. At the same time that they emphasize choice, courses in alternative death care also tend to promote an idealized, “natural death”—a death that takes place at home with the assistance of hospice and minimal interference from medical or funeral professionals. In this way, the aims of alternative death care today are strikingly similar to those of early hospice organizers such as Cicely Saunders, Elisabeth Kübler-Ross, and Florence Wald. Like their 1970s counterparts, contemporary advocates are critical of death’s medicalization, possess an anti-institutional sentiment, Epilogue 91 champion personalized care, and see dying as an opportunity for psychosocial growth and affirmation.

Some death-positive educators and activists recognize their indebtedness to the 1970s death movement, as well the AIDS-focused activism in the era that followed. Nonetheless, many participants experience death positivity as new, a misconception that news accounts continually reinforce. “Death Is Having a Moment,” a 2013 piece in The Atlantic heralded, describing the movement as “recent,” “growing” and “spreading” (Hayasaki, 2013). “Once the province of goth subculture, death is having a moment in the sun,” the New York Times announced in the byline of a 2018 article titled “The Positive Death Movement Comes to Life” (Leland, 2018). The premium of newness in popular media notwithstanding, how did this movement come to feel new when the essential tenor of death-positive activism has not changed in more than 40 years? 

It is likely that the death taboo thesis remains popular because of—not in spite of—the happy death movement.

It is tempting to argue that the death-positive movement resonates just as much now as it did in the 1970s because death denial in the global North has proved intractable. However, just as John Troyer points out in his introduction, assertions regarding a death taboo are empirically dubious, just as they were when The Craft of Dying was first published. Death’s frequent presence in both private and public discourse suggests that the denial thesis is, at best, overstated and under-nuanced (Walter, 1991). The degree to which people in the postmodern West are comfortable acknowledging and talking about death appears to be widely variable and rooted in social contexts such as race, class, gender and occupation. Indeed, it is likely that the death taboo thesis remains popular because of—not in spite of—the happy death movement, which led to the canonization of works such as Elisabeth Kübler-Ross’s On Death and Dying (1969) and Ernest Becker’s Denial of Death (1973), both of which propagated the death-denial thesis. 

There are at least two factors that might help to explain the death-positive movement’s current salience, the first of which is demographic. Lofland argues that one potential reason for the surge of death discourse in the 1970s was that the proportion of people confronting the new face of death had reached a certain threshold that gave way to public expression. In other words, changes in the conditions of death and dying had been underway for decades, but it took a while for those changes to manifest in enough people’s experiences to culminate in public conversation. A similar argument could be made today about the growing proportion of baby boomers who have experienced a serious health crisis or witnessed the death of a parent or partner. Happy death discourse has been a part of our Western cultural repertoire for the past 40 years, but it is increasingly relevant to the large generation of people born between 1946 and 1964. Indeed, the countercultural, choice-driven narrative that characterizes death positivity might have special appeal for baby boomers who came of age in the 1970s. 

A second factor is the current state of hospice care. The alternative death care dimension of today’s death-positive movement has emerged, in part, as a response to the failure of hospice to make good on its promise of holistic, person-centered care. Some of the people who offer courses in death midwifery and end-of-life doula care started their careers as hospice social workers or nurses but left when institutional constraints prevented them from delivering the care they had envisioned.

Although the Medicare benefit afforded hospice organizations greater stability and allowed them to serve a larger swath of the American Epilogue 93 population, it also transformed the very nature of hospice care. TEFRA hastened the institutionalization of hospice and undermined the potentially revolutionary dimensions of its vision (Abel, 1986). As hospices entered into partnerships with hospitals, home health agencies, and nursing homes, they bent to the regulations and procedures of those parent organizations. TEFRA itself redefined hospice’s scope, stipulating that only patients with six months or less to live may receive coverage and that hospices may not offer curative or life-sustaining treatment.

Because Medicare issues a lump-sum payment for each day a patient is served, regardless of what services are actually rendered, hospices absorb the loss when the cost of a day’s treatment exceeds that lump-sum and receive a surplus when the cost remains below it. Some hospices have sought to increase their surplus by deploying an economies-of-scale approach, taking on more patients without increasing their staff or resources (Livne, 2014). Consequently, hospice care is now managed care and, in many cases, resembles other parts of the mainstream U.S. health care system.

Evidence suggests that the quality and frequency of hospice care is uneven and that, particularly when patients are admitted to hospice too late, their needs go unmet (Schockett et al., 2005; Teno et al., 2016; Makaroun et al., 2018). In contrast with the round-the-clock care envisioned by hospice pioneers (Abel 1986), some hospice patients do not receive assistance even in the two days prior to death when their needs are usually highest (Teno et al., 2016). For reasons still debated in the literature, these shortcomings are disproportionately borne by patients of color and patients who are poor (Teno et al., 2016).

If empowerment hinges on purchasing the services of independent practitioners, then empowerment itself is act of consumption.

The trajectory of hospice from a grassroots, anti-industrial movement to a part of the mainstream health care marketplace highlights a key shortcoming of the happy death movement: movement leaders focused on changing people’s ideas about dying and assumed that institutional change would follow. As the history of hospice in the United States so clearly illustrates, institutional logics are obstinate and can persist even in the absence of ideological support. In the end, it was not enough for hospice personnel to present hospital and nursing home staff with an alternative model for end-of-life care. Without proper institutional arrangements in the form of economic and regulatory support, hospices were as just likely to take on the characteristics of hospitals and nursing homes as they were to revolutionize those systems, regardless of patients’ or care providers’ wishes.

 

Nonetheless, hospice faced challenges beyond its institutionalization and integration into the mainstream health care system. Although hospice has, since its inception, provided a meaningful alternative to the protracted suffering we have come to associate with death in Intensive Care Units, its ideals have always been difficult to attain. As illustrated in Emily Abel’s (2018) analysis of the records kept by hospice founder Florence Wald, many early patients and their families rejected expressivity and, despite Wald’s best efforts, remained embroiled in intractable conflicts.

Although the hospice model was premised on knowing when a person would no longer benefit from curative treatment, making that determination sometimes proved impossible. Many of Wald’s patients lacked family support or had loved ones who felt overwhelmed by the prospect of caring for them, and some patients died terrible deaths, even with the full support of Wald and her colleagues. In short, pioneers like Wald held tightly to their vision of a good death, even when their own experiences highlighted the limitations of that vision vis-à-vis the lived experiences of dying people. That their ideals grew out of their own biographies as white, middle-class women also went unnoticed.

There is no doubt that today’s death-positive movement responds to a pressing social concern: there is widespread recognition, well-supported by empirical data, that the U.S. health care system does not meet people’s needs at the end of life (Institute of Medicine, Committee on Approaching Death 2015). At the same time, it is not at all clear that talking about, planning for, or hiring people to help us coordinate our dying will address the systemic problems that lead to bad dying in the first place. Thus, Lofland’s critique of the happy death movement has much to teach us about the blind spots of contemporary death activism. As she points out, death positivity is premised on an ethos that is not shared by all people. Self-reflection and self-expression, choice and personal customization, and the desire for what is ostensibly “natural” are culturally and historically specific values that resonate especially strongly with affluent whites.

As Katharine McCabe (2016) argues in her study of birth midwives and doulas, these forms of empowerment do not pose significant challenges to the health care system insofar as they promote self-sufficiency and personal responsibility, allow for divestment in public resources and mask systemic inequalities that contextualize and constrain the choice-making of non-privileged consumers. If empowerment hinges on purchasing the services of independent practitioners, then empowerment itself is act of consumption, and this model offers no purchase for questioning why our medical system fails people so routinely. What’s more, the narrow ideals of “natural dying” frame as problematic some people’s genuine desire for intensive medical intervention.

How might the death-positive movement engage with the death activism of Black Lives Matter?

Much like the founders of hospice, today’s end-of-life doulas and death midwives face pressures that threaten to undermine the more radical tenets of their work. What is special about these practitioners is that they are not meant to bring a professional agenda to the bedsides of dying people. Instead, doulas and midwives are defined by their authenticity, heart, humanness and a willingness to prioritize above all else the dying person’s needs and desires, whatever those might be. Some of these practitioners aim to “teach themselves out of a job,” as they work to return end-of-life caregiving to the hands of loved ones and community members.

At the same time, alternative death care educators are seeking occupational legitimacy for death midwives and end-of-life doulas, and they are doing so by engaging in the tried-and-true methods of professionalization: by seeking to convince people that end-of-life doulas and death midwives offer a valuable commodity, by codifying a scope of practice, and by standardizing training and certification. These two dimensions of alternative death care—the commitment to humanizing care, on the one hand, and the pressure to professionalize, on the other—are in tension with one another. As one pioneer put it to me during an interview, “How are you going to teach heart?”

Can the commodification of this work be reconciled with the countercultural aim of reskilling loved ones in end-of-life care? And if end-of-life doulas partner with hospice organizations, as some have started to do, how will they navigate systems that are organized to minimize costs? 

Whatever the future of alternative end-of-life care, The Craft of Dying offers at least two important lessons to contemporary death activists and scholars. The first is an unflinching look at how contemporary visions of good dying are the products of particular people, places, and times. Death-positive rhetoric continues to position “natural dying” as a universally shared human experience, one that is rooted in our pre-modern past. Doing so obscures how the movement’s objectives and challenges are distinctly postmodern.

In the same vein, the movement must consider how its tenets reflect the lived experiences of its leaders, most of whom are middle-class, college-educated white women. Eager to bring conversations about dying to marginalized communities, for example, leaders sometimes fail to recognize conversations already taking place. How might the death-positive movement engage with the death activism of Black Lives Matter?

Lofland’s second offering is a stubborn refusal to be easily seduced by the promise of happy dying. This is not to say that people cannot find happiness, peace, intimacy, beauty or closure in death or that we should not try to help people die well. Rather, it is to recognize that our ability to orchestrate those experiences is limited by a host of factors beyond our control. Perhaps more importantly, history suggests that change must take place at the level of institutions, not just individuals. How might the death-positive movement engage more holistically with policy decisions pertaining to our health care system? In any case, the clear-eyed, critical perspective that Lofland models in The Craft of Dying provides a good point of departure for any undertaking meant to change the way people die.

__________________________________

Excerpted from The Craft of Dying: The Modern Face of Death by Lyn H. Lofland, 40th Anniversary Edition. Epilogue by Ara A. Francis, The MIT Press, 2019.

Ara A. Francis
Ara A. Francis
Ara A. Francis is a micro sociologist at College of the Holy Cross with a Ph.D. in sociology from the University of California, Davis. Her publications include Family Trouble: Middle Class Parents, Children’s Problems, and The Disruption of Everyday Life, a book drawn from interviews with 55 parents whose children face challenges ranging from learning disabilities to substance addictions. You can read more about this work on her blog When Things Go Wrong. Her latest project explores alternative end-of-life care, and she is interviewing death midwives and end-of-life doulas to learn more about how they support dying people and their loved ones.





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