Abstract
For the contemporary sociologist, death is very much a moving target. Philippe Ariès (1981) described how during the twentieth century death turned invisible and disappeared into secluded medical spaces. Paradoxically, even when that happened, medicine did not embrace death as an object of professional management: its goal was not handling and monitoring morbidity, but overcoming it, or at least postponing it as much as possible. Around the 1960s, however, critics of medicine began challenging this attitude toward death. They condemned what they characterized as a modern culture of death denial, arguing that patients suffered unnecessarily when physicians pretended they could cure illnesses that were terminal. Today we can see that these critics were influential enough to undermine much of what they criticized. As historian Peter Filene put it, they repeated the argument that death was being denied “until it became a platitude.” “The chant became its own refutation” (1998:49) and instigated a transformation in the social, professional, and institutional management of death and dying.
Sociologist Alex Broom’s book, Dying: A Social Perspective on the End of Life, takes on analyzing this transformation’s outcomes. This project is extremely important: critical social scientists have been highly effective in analyzing death denial, yet have overall shied away from examining the social and institutional structures that their own writing has inspired. The book’s object of analysis—the social construction of dying processes—changes as one writes about it. Institutions such as hospice and new professional orientations such as palliative care are becoming ever more influential in medical communities and in public discourse on death and dying. Broom, a prolific scholar who has already contributed a great deal to research in the area, does an incredible service to our thinking by taking on this topic.
The book is based on fieldwork that Broom conducted in Australia and the United Kingdom during several periods between the mid-2000s and 2014. Broom interviewed dying people, family caregivers, and clinicians who specialize in hospice and palliative medicine, as well as non-palliative care physicians and nurses whose work is relevant to end-of-life care. (He also draws on diaries that several terminal patients wrote in their last weeks.) Broom treats the social construction of dying as intersubjective: numerous actors and institutions partake in shaping dying processes, hence analyzing these processes requires examining how their actions, views, and experiences interact. The book’s first part (Chapters 2–6) investigates the various groups involved in shaping dying processes today. Its last chapters (7–9) analyze several core issues related to the management of death and dying: alternative medicine and what Broom calls “survivorship discourse,” gender, and embodiment.
Many of the chapters cover topics that deserve entire books, and some of them—for example, nursing at the end of life—have already been the center of such books (e.g., Chambliss 1996). Still, reexamining these topics is warranted given how much the field has changed. At the end of several chapters, Broom acknowledges that he has merely scratched their topics’ surface; and indeed, much of what the book does is highlight what research has yet to be done in various areas. This strategy of covering vast ground in broad-brush strokes is effective in mapping the end of life as a research field, but it also left me wondering if chapters should not have been framed around more limited topics.
Broom’s most impressive achievement is outlining the new professional institutions and moral views that structure dying today. The hospice and palliative care movement has become central to this structure: it defines what counts as good and moral care at the end of life. Broom examines the workings of hospice and palliative care: the ways they valorize, allow, and encourage certain attitudes toward death (e.g., reflection, acceptance), while disallowing and marginalizing others (e.g., euthanasia). Some parts of the book are very disturbing, particularly when Broom quotes hospice patients who appear unaware of their terminal diagnosis (“I thought the point of being here was to teach me how to get mobile again,” one of them says [p. 48]). But the most sociologically intriguing observations are about normal and legitimate forms of care, not deception and malpractice. Patients who feel pressured to accept death—or to act optimistic when they are devastated—show that in some contexts, humanistic principles, which generations of idealistic hospice advocates have promoted very eagerly, have become symbolic violence. “Hospice,” as Broom aptly puts it, encourages “a moral performance of acceptable dying” (p. 149); and what is acceptable is very much a product of social power.
One major question the book raises concerns historical change. Around this issue, I think the argument is not sufficiently developed. On the one hand, Broom is clear that “professional dynamics . . ., rising public awareness of the dying process and care practices therein . . ., [and new] institutional processes and forms of care offered” add up to an important transition in how people die and how societies in the West approach death professionally and policy-wise (p.155). On the other hand, Broom still argues that “while we are provided a plentitude of advice and support for healthy living in modern societies, there is a paucity of awareness and understanding of dying” (p.9). In the book’s very first sentence he argues that death-denial is still living, recounting that when hearing he was writing a book about death, his colleagues hurried “the conversation on to another matter” (p.1). Despite growing public discussions on death and dying—and even though hospice and palliative care have achieved professional stature, public legitimacy, and moral authority—death-denying attitudes are somewhat stable.
This view reverberates throughout the book’s empirical chapters. Take Chapter Two, which focuses on the “ground zero” of care for the dying: conversations where specialists tell patients that curative care has become futile and refer them to palliative care. Broom argues that “many doctors find the fact that their patients are dying highly problematic, themselves holding onto hope for longevity, and even continuing futile treatments” (p. 34). Much of his data, however, can be read differently. For one thing, Broom’s interviewees did refer their patients to hospice and palliative care—which is not obvious given the virtually infinite list of life-prolonging interventions, therapies, and clinical trials they could have offered (Kaufman 2015). Furthermore, many interviewees shared views that resonate with hospice and palliative care ideas. This is particularly telling, since Broom limited his interviews to experienced specialists (16–30 years of medical practice), who tend to be more conservative and less open to new ideas in the area (Kübler-Ross 2003: 248). An oncologist told Broom that discussions on palliative care should take place early in the disease process, way before treatment reaches the point of futility (pp. 25–6). A surgeon reported telling terminal patients, “‘you’re probably going to die at some stage. It’s not going to happen right now but I’d very much prefer if you met the palliative care colleagues, so you get to know a friendly face’” (p. 27). Broom rightly identifies in these quotes attempts to disassociate palliative care from imminent death and paint the specialty in more rosy, “upbeat” colors. But is this denial? Don’t clinicians adopt similar strategies when convincing reluctant patients to consent to, say, invasive surgeries or chemotherapy?
It seems to me that its critical undertones notwithstanding, the book at times embraces the hospice and palliative care perspective too easily. Statements such as “processes of professionalisation and mainstreamisation within the palliative and hospice care movement have improved care for the dying” (p.13) are normative. They clash with the strong and very effective sociological position that Broom adopts in other parts of the book. By consequence, the book does not always unpack taken-for-granted truths, asking, for example, how did hospice become synonymous with “improved care for the dying”? Who promoted this view and why has it been so successful? Along the same line, the term “futile care,” which Broom takes at face value, can and should be questioned sociologically: who defines treatments as futile and by what criteria? Who is expected to accept these definitions?
It is difficult to adopt a sociological stance when studying a topic as emotionally and ethically challenging as care for the dying, let alone when discussing a highly reflective and idealistic group of people—hospice and palliative care advocates. But it is only through such a stance that one can truly pursue Broom’s highly important goal: facilitating “greater transparency in relations of power, influence and obligation within the spaces where increasingly people are dying in contemporary societies” (p. 156).