Combined Book Review: The Inevitable Within Grasp: Contemporary Death and End-of-life

Kaufman, Sharon. 2005. And a Time to Die: How American Hospitals Shape the End of Life. Simon and Schuster.

Stonington, Scott. 2020. The Spirit Ambulance: Choreographing the End of Life in Thailand. University of California Press.

Death is surely a defining feature of the human condition—tying every being together with its universality and constituting the ethical substance of many lives. Beneath such universality, however, lies particular understandings of how a ‘good death’ should be. One could, perhaps, argue that achieving a ‘good death’ has been a more pressing and complicated issue than ever before. With the prolongation of life expectancy, the emergence of modern hospitals and technology, and biomedicine’s endeavor of containing ‘life’, the deathbed has often become a site of negotiation among the various forces that act on the body. Such vectors become more visible when culturally grained understandings of a ‘good death’ may encounter the powerful institutional boundaries of the hospital and universalizing biomedical practices. Two compelling ethnographies that center on end-of-life decision-making and attempt to unearth such forces are Sharon R. Kaufman’s And a Time to Die: How American Hospitals Shape the End of Life (2006) and Scott Stonington’s The Spirit Ambulance: Choreographing the End of Life in Thailand (2020). While the former takes place in California and focuses on the ways hospital culture’s internal ambivalences about death lead to the impossible choices patients, families, and hospital staff have to make in end-of-life scenarios; the latter sheds light on the processes of planning a ‘good death’ in Thailand and the ways biomedical resources and Thai Buddhist ideas are interwoven into them. This writing will attempt to identify various themes and lenses to analyze the books while utilizing both ethnographies to bring about reflections on ‘end-of-life’ in hospitals.

Death: Time and Place

Kaufman’s two years of fieldwork (1997 and 1999-2000) in three community hospitals in California consists of following, talking with, and taking part in the lives of numerous patients, their families, and hospital staff. In her book, she observes how people approach end-of-life in the hospital and the decision-making processes that follow. Kaufman provides a rich amount of ethnographic material as she makes case studies of 27 stories in which patients, families, and hospital staff navigate through various choices of continuing treatment or giving way to death. While doing so, the author also pays attention to the various forces—be it biomedical language, institutional requirements, or cultural understandings of death—that shape the options, decisions, and processes that untangle end-of-life scenarios. To her, in the United States, one of the main reasons that hospital deaths become problematized is due to the contradictory emotions people have of both wishing ‘good death’ to themselves or loved ones and (equally or more strongly) wishing themselves or their loved ones to not die (p.4). To put it in another way, while tools and technologies of medicine help extend people’s lives, there is yet a contrasting value of ‘dying with dignity’—often without the artificial prolongation of life tied to machines and technology. Such ambivalence is tied to how death today is open to endless negotiation, especially given how death can be timed “and timing has become the crux of the matter” (p.3). This becomes especially evident in the new reality she describes as ‘death brought to life’. In it, the patient is unconscious (yet, at times biologically responsive) in a vegetative or comatose state and is in a gray zone between life and death—thus bringing death to life. Such death-brought-to-life scenarios often require patients’ families and hospital staff to ultimately agree on a decision to let the patient pass away in a controlled manner to both bring an end to the patient’s ‘artificial’ grasp to an ambiguous form of life and keep things moving within the institutionalized dynamics of the hospital. Therefore, as Kaufman describes, the book is about “time and death” (p.1). While death used to be something waited for, today it is mostly decided (p.92-93): the deathwatch has given way to Intensive Care Units (ICU) in hospitals. 

In The Spirit Ambulance, Scott Stonington’s year of fieldwork in northern Thailand (2007-2009) leads to a gripping ethnography consisting of powerful stories about families and hospital staff’s attempts to curate a ‘good death’ for the patient during his/her end-of-life. This understanding of ‘good death’ and the practices that surround it presents the curious ways Thai Buddhist ideas and cosmology become interwoven with biomedical resources—leading to certain common phases that a patient’s end-of-life goes through. This process often involves aggressive medical care that the family members of the patient (often the patient’s children) heavily insist on as part of their ethical endeavor to pay back the ‘debt of life’ that they owe to their parents (p.18). On the verge of death, however, the patient is taken out of the hospital, as the hospital—hosting countless unpleasant deaths—is believed to be filled with “polluted metaphysical forces” (p.23) that negatively impact one’s ‘rebirth’ in the next life if one is to pass away there. The patient about to die is then quickly put into an ambulance (‘spirit ambulance’, in the author’s words) to be rushed back to his/her home where it is a place “full of familiar people and possessions, and blessed by a history of moral family life” (p.23)—thus an ideal place to die. While the former book is about controlling the time of death, such ‘choreographing’—as Stonington calls it—of death involves and manages, not only time but both time and place (p.98). Therefore, in the case of northern Thailand, “the ethics of the good death are ‘situated ethics’” (p.99). Stonington uses the concept of ‘ethical location’ in describing how ethics are situated and emplaced in such ways and locations. This becomes more evident in a story in the book when a physician, as the ‘spirit ambulance’ finally arrives at the patient’s home, pulls the life-sustaining tubes of the patient. When the author asks the nurses near him about the ethical implications of doing such an act that went against the basic tenets of bioethics, the response he received implies that the act was ‘ethical at home but not in the hospital’ (p.4). 

Biomedical technologies maintaining the timing of death is certainly a common point in both books. Yet, what is especially striking is how ‘good death’ could be emplaced and be equated with a place itself (home being equivalent to a good death in the Thai case) in a certain metaphysical landscape. Looking into Stonington’s ethnography, the hospital, to his interlocutors, bears many desacralized elements. The monks do not go to the hospital, “their prayers don’t work well” (p.78) there as the hospital is mostly unconsecrated. Hence, the hospital misses many important things for the end-of-life in Thailand and the patient is brought to a more sacred space to pass away. In the case of American hospitals, however, although very rarely mentioned in Kaufman’s book, we encounter the presence of the chaplain (a religious figure employed to provide spiritual care in the hospital) whose profession is supposed to bring along the missing spiritual elements to the institution. In other words, unlike the case in Thailand, the sacred/spiritual rituals, symbols, elements, and discourse that certain patients or families may value and demand in end-of-life are brought into the hospital room in the US. A reason for this is surely the differing theological backgrounds that predominate these two field sites and how some rituals and symbols, corresponding to the relevant theologies, transcend space while others are emplaced. But another interesting thought to entertain is the various institutionalized approaches and relationships the modern state may have towards/ religions/spiritualities and secularism. In the Thai case, the phases of choreographing the type of ‘good death’ are very much acknowledged by the hospital staff—as they realize the ethical location of bioethics and partake in the ‘spirit ambulance’ and the choreographing that comes along. The ideals and cosmologies that shape end-of-life are very much part of the politics and national identity in Thailand with Buddhism’s strong presence and influence. This is especially visible in the end-of-life planning of an influential Buddhist monk, Buddhadasa, that Stonington mentions which has sparked a huge public debate in Thailand when the monarch wished the monk to live longer by resorting to aggressive care instead of letting him pass away in his monastery. In the American case, however, the hospital staff consisting of doctors who attempt to maintain life, nurses who intend to provide palliative care and for patient comfort, and chaplains who are supposed to provide religious services and bring spiritual care, present an image in which the state, through its institution, is becoming more and more involved within the life—body and soul, if such dichotomy exists—of the citizen especially in end-of-life. Yet, paradoxically enough, such involvement is contingent on one’s medical insurance coverage and whether a certain citizen and his/her illnesses are eligible for it.

Truth and Knowing

In The Spirit Ambulance, before the patient receives aggressive medical care as part of being paid back the ‘debt of life’ that his/her children owe and before s/he is then rushed home to die in the last moment, the diagnosis of a patient’s disease and that patient’s relationship to the disease after the diagnoses too is very striking and requires attention. In how Thai Buddhists understand death, the space in which one passes away is not the only thing that determines a good death. One’s kamlang čhai (‘heart-mind energy’) too has a great impact on one’s soul after death. The term refers to a certain existential state of a person and roughly denotes a person having good spirits—impacting one’s emotional, physical, and spiritual being. A lack of kamlang čhai would leave the heart-mind weak and not only lead to physical and mental deterioration but also to a ‘bad death’ if one dies in such a state. Interestingly enough, one of the things that hindered patients from having kamlang čhai was knowing about their disease. This is apparent in an ethnographic example of how a doctor, thinking that the patient is asleep and talking with the hospital staff about the patient’s situation, accidentally reveals the patient’s cancer to him. Being in despair and having a “rotten heart-mind” (p.48), the patient eventually dies in distress. His son then blames the doctor claiming that it was the doctor who killed his father by telling him his disease. In this understanding then, it was not cancer that killed the patient but the truth itself (p.49). Hence, to maintain their loved one’s kamlang čhai, family members would often put an active effort into hiding diagnosed diseases. The case presents certain paradoxes as Stonington mentions how every room in the hospital has a sign on the wall indicating the patients’ right to know their disease yet they exist along with the active efforts of other individuals who deny such right to the patient for the patient’s wellbeing and kamlang čhai. At times, such efforts are enacted by the patients themselves. For instance, Stonington writes about an old man with cancer who simply, when asked about anything by the author regarding how he felt or his disease, insisted on the response, “I have so much kamlang čhai. I am so happy!” (p.51). Interestingly, such acts that may be part of a seemingly willful ignorance are not simply about knowing or not knowing. In a part of the book, Stonington visits a hospice in the National Cancer Center in Thailand with the assumption that it is a place where people accept their disease and the fact that they are dying. He then becomes utterly shocked—perhaps like the reader—when an intern there claims that some patients may not know about their disease (despite the word ‘cancer’ written in big letters on the side of the hospital). After hearing an explanation of “They know and they don’t know. They know and they don’t want to know. We don’t tell them. They don’t ask. We give them kamlang čhai” (p.53). This reveals to Stonington how, in this case, knowledge wasn’t black and white and was simultaneously present and not present: “Knowledge was less important than what was going on, which was the provision of kamlang čhai” (p.53). The action and practice of giving and maintaining kamlang čhai werewhat mattered and “existed on a plane orthogonal to truth and lie, to knowing and not-knowing”. Meanwhile, some other patients preferred knowing about their disease and being on good terms with it as part of their ethical endeavor of reaching enlightenment through accepting suffering as karma and showing love to it. Yet, as they claimed, this was only under the capacity of fewer individuals who had a strong heart-mind—unlike that of lay people.

In Kaufman’s book, we see a very different relationship to truth among family members and patients in the hospital. According to her, one of the main reasons that create the sort of previously mentioned ambiguity and problematization that surrounds the patient’s bed is hidden kinds of knowledge that hospital staff share among themselves (such as hospital routines and procedures, what needs to be done in the gray zone between life and death, etc.) (p.8-9). The information that these professionals possess “stands in sharp contrast to what patients and families experience” (p.9) when they find themselves in the hospital and confront critical illness. Especially when such a hierarchy of power and knowledge meets the doctors’ use of equivocal language when speaking about the patient’s chance for ‘meaningful’ survival, “emotion, opinion, and ‘fact’ become impossible to separate” (p.17-18) for families. Such language utilized by the doctors, at times, gives patients’ loved ones a sense of false hope, and at other times, intensifies the uncertainty patients and family members face in the choices they must make concerning life and death. According to Kaufman, the desperate lack of access to knowledge and truth of the patients and families becomes visible again when they find themselves not knowing enough about their health insurance’s policies and coverage—which may, for some, create a revolving door of getting admitted to the hospital and being sent back to the nursing home.  

Such a curious difference between the two cases in the books does not lift away the power/knowledge hierarchy inherent in the hospitals (whether Thai or American) but provides some epistemological and ontological implications. Although Stonington, also having received medical training in the US, contrasts the Thai approach to knowing/not knowing with a certain “pillar of Western thought” (p.53) that paints a black-and-white picture of knowledge, I do not think that such a “pillar”—if true—explains the experiences of patients and their families in the American hospitals that Kaufman presents. This is very clear in how Kaufman describes the death-brought-to-life scenarios of patients who are in a gray zone between life and death. No one really knows for sure how to define death in such scenarios or whether the patients would eventually hold on to life if given an indefinite time. Yet, the decision-making that goes on in pulling the plugs or not is very much influenced by the language doctors use, insurance policies, miscommunication, feelings of hope/despair, technology, etc. There is neither black nor white, but the coming together of all these factors, agents, and institutions which paint a gray picture of life and death. End-of-life, based on Kaufman’s ethnography, is a process that does not necessarily aim to reveal the truth. End-of-life processes are fueled by the ethical demands generated by the bringing together—and at times, clashing—wishes of a ‘good death’ and not letting die. Although, sometimes, certain family members may crave to know more about their loved one’s health conditions and chances of survival, anything that is uttered in this regard by the hospital staff, instead of getting closer to a truth that may bring more certainty, adds further layers of complexities to the process and uncertainty to what should be done. To take it a step further, looking into cases in Kaufman’s book, one could also say that knowledge, and attempts to obtain it, do not reveal the truth but further veil it. Along with the birth of the ‘patient’, with ‘disease’ becoming an object of knowledge and its problematization and management by technology, biomedicine today can deny, to a certain extent, the power of death, which “for millennia had been understood as ‘natural’ truth’” (p.64). Yet, the ways such problematization and knowledge transform the patients and drift them to the gray zone have made death and life concepts more elusive than ever before. Perhaps not much can be said about death or life today, but what could be said, regardless of the case of Thais who wish to cultivate kamlang čhai or Americans who are stuck in plugs in the grey zone, is that binaries (knowing/not-knowing, or life/death) today coexist and can occur simultaneously in the end-of-life in the modern hospital institutions.

Technology, Life, and, ‘Good Death’

One other remarkable theme that emerges from the two books is the concept of ‘good death’ and how life-sustaining technologies are perceived. While both books center on attempts and complexities of achieving a ‘good death’, they differ when it comes to how the authors’ interlocutors perceive the place of technological equipment that sustains the lives of their loved ones. In Kaufman’s ethnography, often when American patients, families, and hospital staff refer to dying with ‘dignity’ or ‘quality of life’ (concepts the author traces to theology and bioethics), they imagine a death devoid of suffering along with a person passing away without the tubes, machines, and other sorts of aggressive medical interventions that attempt to sustain and maintain life—despite their wishes to prolong life through such tehnologies. Such an understanding not only separated “artificial” technological prolongation (p.4) from dying with “dignity”, but, as was mentioned, led to the very ambivalence that confronted families who wanted both their loved ones to live and not die without dignity. Moreover, biomedical technologies, although being the source of life—and thus hope—for many, posed a particular existential threat to the patient’s personhood. Life in a comatose or vegetative state that was tied to biomedical technologies and interventions both blurred understandings of life and death and brought to question what it meant to be a ‘person’. When the patient was silenced by his/her disease and the responsibility of deciding what constituted dignity, in this case, was put on the shoulders of family members and hospital staff, “artificial” prolongation of life was often a significant factor in decision-making. The unresponsive patient cannot be a whole without the tubes and machines that sustain his/her life and does not have much of a “self” without a voice. Kaufman writes about such patients as incomplete persons requiring the fabrications of others and how that absence is “minimized and filled in during the day-to-day, routine interactions of staff and families with patients and in health care team discussions about care in which attributes of the life and the person are both proposed and inferred” (p.316). 

In the case of Thai patients and families, as Stonington presents it, we encounter a different perception of both such biomedical machines and interventions and life itself. Returning to the concept of ‘debt of life’ that patients’ children need to pay back, in such end-of-life scenarios where family members wished to ‘pay back’, it was really life itself that mattered. This is evident in some interlocutors’ words: “Even if father were a dog, a swine, a buffalo, even if he beat us or abandoned us, life is a debt and we have to pay it back” (p.29), “We have to give them life. Life is everything” (p.30). Yet, the way Stonington’s interlocutors understood life was “not just an abstract property of human consciousness; it was also a thing” (p.30). In the author’s description, life, according to these Thai people, was as if it was something material enough to be transferred. In that sense tubes that fed the patient became a way to pay back the debt of ‘flesh’; dialysis and IV medications for the debt of ‘blood’; mechanical respirators for the debt of ‘breath’, and so on. Despite the metaphysical pollution in the hospital room, what was in the room was very much part of the choreographing of death. Thus, biomedical and all other forms of resources were “interwoven together into such a coherent way of dying” (p.145). 

On the one hand then, in Kaufman’s book, we encounter how “natural death stands as an abstract cultural ideal, and it is largely understood to be a somehow ethically neutral event that is unhampered by technological interference” (p.323-324) where such vision becomes more and more difficult to sustain in a society that has its increasing insatiable demands for medical intervention—leading to various sorts of ethical dilemmas and ambivalences experienced. On the other hand, in The Spirit Ambulance there is the choreographing of death that faces far less tension with technological interference but also faces certain paradoxes and challenges in terms of patient autonomy and rights in a world that is more and more informed and influenced by global biomedical trends of ‘end-of-life’ management and acceptance. Nevertheless, despite such differences, Stonington sees certain elements of contemporary death that may transcend geography—which I believe this writing also reflects. First is the fact that death needs to be choreographed. And to make good death, “we needed to manage the hospital and everything it entailed” (p.149). Second is how medicalization has brought mixtures of biomedical and other elements in the good death. Technological interventions today, with various forms of discourse that surround them, bring new practices and understandings of dying and reveal taken-for-granted perceptions about life that are informed by cultural worlds and historical trends. Lastly, end-of-life scenarios create, what Stonington calls, ethical wound and lead to struggles and efforts that are more relational than individual. This can be seen, in both books, in the collective and complicated attempts of family members and patients in choreographing a good death—binding and reconfiguring people with one another through the “stickiness of moral action” (p.149).

Image: Old Man on Deathbed by Gustav Klimt