By Donald Joralemon Routledge, 2016 Review by Jamie Carlin Watson, Ph.D. on Jan 10th 2017
Mortal Dilemmas: The Troubled Landscape of Death in America is an accessible and informative contribution to the public conversation over death and dying. To the many scholarly and popular voices, Donald Joralemon adds the anthropologist's to explore five end-of-life challenges through political, legal, religious, and bioethical lenses: assisted dying, uncertain mental states, the definition of death, the role of grief, and memorialization. He bookends his discussion with the question of whether America is a death-denying culture, and he draws on his research into these five dilemmas to argue that, despite some popular claims to the contrary, U.S. culture has adapted some sophisticated means of embracing death.
Joralemon opens chapter 1 by rehearsing a common argument for the idea that American culture is death-denying. Technology and regulation have pushed the dying process out of the home and community and behind closed doors, into intensive care units, long-term care facilities, and rehabilitation centers. This "medicalization" of dying encourages society to view death as if it is something taboo or distasteful that can be rendered invisible without loss of meaning in our increasingly individualist and secular lives. Joralemon argues that, on the contrary, that the situation is more complicated. Cultural perspectives on death vary. For instance, many prominent American sub-cultures (for example, some Mexican American and Jewish groups) still practice elaborate social rituals associated with dying. Further, the conclusion that America is death-denying overlooks an important distinction between biological death and social death--the ritual and emotional behaviors we engage in to come to terms with the separation caused by biological death. While the relationship between biological and social death has changed, its richness and purpose have not.
Prior to advancements in medical technology that allow us to prolong life and discover terminal diseases long before they take a life, biological death largely preceded social death. Elaborate mourning rituals helped communities repair the hole left by the loved one's absence. But the increasing involvement of medical professionals in the dying process, combined with economic constraints that render it more difficult to spend extended time with dying loved ones, has reversed the order, pushing the still-living person out of immediate sight and starting social distancing before biological death. Joralemon argues that this shift has created a liminal state between living and dying that introduces a new tension in how we view biological death. However, rather than evidencing a denial of death, this shift simply raises new challenges. The dying person can now take greater control over the social, and in some cases the biological, dying process, and the non-dying must make decisions about how to include the dying in the mourning process.
In chapter 2, Joralemon uses the case of Brittany Maynard to rehearse some of the more prominent debates over assisted dying. He highlights that a majority of Americans favor of increasing empowerment for dying patients to request medical aid in dying, due largely to an increasing respect for autonomy in the medical and bioethical community, along with the recognition that quality of life can be justifiedly valued over quantity of life. Nevertheless, he acknowledges that significant opposition to assisted dying remains, predominantly from influential religious groups and disability rights activists. While religious arguments from dignity and God's sovereignty are well rehearsed, the argument from disability advocacy is less well-known and is a welcome inclusion in this short book. The idea is that dying patients are vulnerable to non-dying people's perspectives on what makes life worth living. This may lead, opponents argue, to a discriminatory expansion of eligibility criteria for assisted dying that include patients who might value living despite their disabilities but who, because of their illness or incapacity, cannot authoritatively express this preference. Joralemon concludes that this debate reveals important ways that American values of individual choice and respect for autonomy come into conflict with religious and social values of what is meaningful.
In Chapter 3, Joralemon uses some of the less controversial aspects of the cases of Karen Quinlan, Nancy Cruzan, and Terri Schiavo to highlight shifting perspectives on the nature and implications of uncertain mental states--most importantly, minimally conscious, persistently vegetative, and permanently vegetative. The most striking aspect of this chapter is the reminder that, while the medical community and courts were almost unanimously convinced that Terri Schiavo met the conditions sufficient to morally justify removing life support, a small minority of religious and political opponents kept the case--and Schiavo--alive for fifteen years. Joralemon includes in this chapter an excellent discussion of the appeal to miracles in cases of uncertain mental states. The problem with invoking "miracle stories" to defend particular plans of care, he argues, is that they ignore the low statistical likelihood of recovery along with the heightened medical risks and complications that can occur with prolonged medical care, and they overlook or exaggerate the nature of recovery, especially the often substantial remaining impairment of those who "recover." Joralemon concludes with the largely settled debate over whether artificial nutrition and hydration (ANH) should be regarded as a "medical treatment," such as chemotherapy, that can be refused or "ordinary care," such as pain medication, that cannot. While the courts and medical community now almost unanimously regard it as the former, a minority of voices, mostly political, driven by religious voters, still advocate, if not for the latter, for greater restrictions on removal of ANH than other treatments.
In chapter 4, Joralemon reviews arguments for and against regarding "brain death" as a type of death distinct from "biological death." Given that medical technology allows us to preserve cardio-pulmonary function even after irreversible damage to mental capacities, and given that organ donation requires organs perfused with blood, the medical community opted to follow Harvard University's Ad Hoc Committee to Examine the Definition of Death's 1968 recommendation to treat "whole brain death" (when a patient exhibits no discernable central nervous system activity) as a sufficient criterion for death. The controversy over this definition has largely to do with concerns about the motivation for it--that it increases the number of viable organ donors--and about the accuracy of the methods used to determine whole brain death. Joralemon cites the cases of Marlise Muñoz and Jahi McMath as examples of the latter. Unfortunately, the details of these cases are exceptional in a number of ways, rendering them poor counterexamples to a practice that garners little criticism in day-to-day medical contexts. Despite his concern in the previous chapter that miracle stories make bad evidence, Joralemon fails to note that bioethicists and physicians largely agree that our methods for determining whole brain death have proved largely reliable. In fact, his alternative suggestion, which he offers in an interlude that follows chapter 4--that bioethicists start taking personhood criteria more seriously for determinations of death--raises many more ethical concerns among ethicists than the standard medical criteria for whole brain death.
Chapter 5 highlights the ongoing debate over whether some expressions of grief associated with dying should be regarded as pathological and in need of medical treatment. Some psychiatrists advocate for a new medical diagnosis of "prolonged grief disorder" (PGD) for those whose grief is particularly extreme and/or endures beyond what is statistically normal. The concern is that some instances of grief are indistinguishable from major depressive disorder (MDD), and therefore prolonged grief over a dying loved one might either be a manifestation of MDD or engender it. Unfortunately, Joralemon points out, determinations of what are extreme or prolonged expressions of grief are culturally relative. Some cultures grieve far longer and more extremely than Americans, but this doesn't imply they are pathological. Thus, if an American's expression of grief is a statistical anomaly, we should not pathologize it without independent justification. Joralemon notes grimly, though, that the DSM-V includes vague language about grief that opens the door to treating grief as an illness and that pharmaceutical companies will likely find it in their interests to walk through it.
The most disappointing moment in Joralemon's book is chapter 6, "Inconvenient Bodies." Though he proposes to address moral questions surrounding the value of corpses, he departs from the health care context and recounts legal and cultural disputes over the treatment of bones when they are discovered during excavations or require moving as a result of urban expansion. A number of important moral disputes have recently arisen in the bioethical literature over the treatment of dead bodies in health care settings, for instance, organ sales, requests for posthumous reproduction, and political concerns over whether organ donation decisions should be structured as opt-in or opt-out. Yet, Joralemon is silent on these issues, opting to discuss only disputes between Native American groups and government over potentially sacred remains, a "dilemma" that seems to have been successfully resolved in each case.
Chapter 7 continues the departure from health care and recounts a number of ways that memorialization has evolved with technology. There is nothing in the way of a "dilemma" in this chapter; Joralemon simply notes different aims of memorials (remembering, maintaining a connection with the dead, highlighting moral horror) and speculates about why we engage in what he considers "hyper-memorializing," though he doesn't define this term or cite any standard by which American memorializing would qualify as "hyper." He tells us only, rather uncontroversially, that the Washington Memorial reminds us of a cultural icon's role in the U.S.'s origin story and that the Vietnam Memorial honors patriotism and sacrifice.
Joralemon concludes in chapter 8 by revisiting his argument that America is not a death-denying culture, highlighting the steady increase in professions and scholarly work devoted to death and dying, along with fiction and non-fiction literature, film and television, and the internet. Rather than denying death, Americans have simply found new ways to embrace it. He closes with some projections for these debates in the public sphere, such as that end-of-life care will garner greater public attention and support, that assisted dying will gain greater acceptance, and that grief will acquire the status of a disease.
There are a number of laudable aspects of Joralemon's book. The first half is well-supported and includes debates that figure prominently in both the clinical and philosophical literature on death and dying. He does a superb job of explaining the legal and political dimensions of several important bioethical cases, and he does well to keep legal, social, and religious norms distinct from moral norms. The first half of the book would make a nice supplement to courses in bioethics and death and dying because it includes much of the legal and political dimensions of classic debates that some ethics texts ignore. Unfortunately, chapters 6-8 suffer a noticeable reduction in scholarly treatment. Citations and academic debate are replaced with shallow historical accounts and speculative assessment, rendering them less suitable for classroom use.
Despite the book's positive traits, there are a number of deficiencies that warrant noting. Readers interested in philosophical bioethics will find this book lacking in a number of ways. While Joralemon takes care to explain the legal and political dimensions of these dilemmas, including arguments from anthropologists, legal scholars, physicians, and medical bioethicists, his treatment of the ethical aspects is superficial. For instance, in chapter 2, he fails to draw basic distinctions such as voluntary, non-voluntary, and involuntary, important for questions about assisted dying. And he intentionally avoids the phrase "assisted suicide" because of the negative associations with "suicide," though this effectively prevents him from distinguishing a physician's helping someone take their own life from health care providers' directly hastening death through active or passive euthanasia. Further, he mentions that autonomy "figures prominently" in bioethical frameworks used to defend assisted dying but does not acknowledge the myriad conceptions of autonomy at stake in these debates or their various implications for moral questions about, for example, assisted suicide. It is disappointing that nowhere in the book does Joralemon acknowledge or engage with the tremendous contribution of philosophical bioethics to these debates, from discussions of patient rights, to decisional capacity, personhood, and the definition of death. In one place, Joralemon does mention the philosopher Peter Singer, but Singer's views are notoriously regarded as radical among philosophical bioethicists. And the most prominent contributors to these debates, such as Robert Veatch, Janet Radcliffe Richards, Dan Brock, David Magnus, and Tom Beauchamp are conspicuously absent.
Mortal Dilemmas is, ultimately, a clear and informative introduction to major concerns surrounding death and dying from a social science perspective. Its strengths lie in Joralemon's clear style and his command of the public dimensions of these debates. Its drawbacks, while notable, do not prevent it from contributing an important perspective to the broader ethical discussions of death and dying, but readers would benefit most from pairing it with an influential treatment of the ethical issues, such as Beauchamp and Veatch's Ethical Issues in Death and Dying (Pearson, 1996).