A Commentary

The research and practice agenda set forth by Dr. Daniel Sulmasy 2002 foregrounds the humanity of the patient rather than the treatment routines, medical algorithms, and institutional constraints that often preoccupy health professionals, and it emphasizes the fact that an engagement with the human, the vulnerable, is a central source of meaning and healing at the end of life. There is no doubt that attention paid to spiritual dimensions of a life is one important way both to relieve suffering and anxiety and to acknowledge finitude and the transcendent. His assessment that "the spiritual" or "the religious" cannot be analyzed or understood as a separate entity removed from the context of a life is an important one. After that, any methodological tools aimed to measure spirituality per se as a distinct variable are fraught with difficulty. But, regardless of the limits of various measurement strategies, the awareness that end-of-life care includes—in fact demands—a human relationship between the health professional and the dying person is an important step in providing dignity to those who are dying. Changes in medical care practices that promote humane interactions at the end of a person's life are being implemented in hospice and palliative care settings around the United States. A number of specific strategies that are designed to address the humanity of the dying person and that pertain to spirituality particularly are described in the recent sourcebook for clinicians, Improving Care for the End of Life (Lynn, Lynch, and Kabcenell 2000). As the collaborative innovations described in that volume illustrate, health care delivery practices modified to emphasize listening to the dying patient and being present with that patient go a long way toward the creation of dignified dying. There is a rich literature in anthropology and sociology that provides qualitative research perspectives on eliciting the meaning of serious disease and finitude for ill persons, for example, Becker 1997, Gordon 1994, A. Frank 1995, G. Frank and colleagues 1998, Kleinman 1988, Mattingly 1998, and Rubinstein, Kilbrige, and Nagy (1992). The empirical studies of those scholars provide important and useful examples of the multiple impacts of illness and medical treatments on the self and the ways in which meaning is constructed through the lens of suffering. Just as meaning at the end of life is known through the biography of the life, the experience of dying, for so many Americans, is understood through hospital treatment and the pathways of hospital decision making. This basic fact is sometimes overlooked in the quest by health professionals to discover and address meaning as a discrete entity, as though it were an isolated entity that could be found through direct questioning. The widespread cultural conversation in American society about autonomy, "death with dignity," and "a good death," which focuses on the individual person as the unit of authority and action, ignores the power of the hospital as an institution and bureaucratic system to make dying happen in certain ways and thus to be experienced in certain ways. Most Americans still die in acute care hospitals (Institute of Medicine 1997). When faced with critical illness or a terminal prognosis, and especially when they find themselves in the strange and demanding hospital environment, patients and families certainly worry about death and hope and pray for recovery. But, they do not often feel in control of very much in that institutional setting, and they rarely ponder a style or type of death there. Desperate to know what is wrong, anxious, exhausted, confused, hopeful, and prodded by the medical staff, however gently, to focus on the next decision point, they seldom consider what "a good death" would entail or how to facilitate such a notion. In some circumstances, when death can be anticipated or acknowledged as likely or possible, "spiritual" needs and expression become obvious in the hospital environment, for example, when a patient or family requests a priest or a rabbi, when they respond to unsolicited visits by the hospital chaplain, or when a patient says goodbye to family and friends or communicates, somehow, that she or he can no longer fight for life. Spiritual expression is evident, too, when family members gather at the bedside to talk, pray, sing, reflect, and acknowledge the ending of a life. Doctors, nurses, social workers, and chaplains quietly and unobtrusively facilitate such moments in their ongoing hospital work. When any of these things happen, dying is identified, and the "biopsychosocial-spiritual" that Sulmasy refers to can, at least in part, be revealed. Then one can acknowledge that something essential has taken place to mark the crossing of life's threshold. My own recent anthropological research investigated ways in which dying occurs in the acute care hospital and focused specifically on how hospital experience shapes meanings about the end of life for patients, families, and health professionals. I spent several years (beginning in 1997) observing and recording trajectories of disease and medical care, as well as observing debates and discussions about that care. I paid particular attention to patient, family, and health professional points of view about treatment near death and the meaning of the nearness to death for patients and, mostly, for their families. There is no doubt that spirituality—however that term is construed—is a powerful component of the multiple meanings surrounding hospitalization and dying. Rather than look to discrete measurement tools as guides for health providers to locate and specify the meaning of death to individuals, this commentary engages the topic of meaning by drawing attention to the fact that meanings are always embedded in and made through intersubjective relations, cultural worlds, and structures of power. For example, what constitutes "the spiritual" within the dying person, especially when that person is a hospitalized and critically ill patient, cannot necessarily be seen, analyzed or known as an isolated entity, removed from its emplacement in contexts of action and reflection. In addition, the search for and development of humane models for healing the patient—humane from the health provider perspective, that is—may obscure an equally compelling reality in the hospital setting: the family's understanding of the patient's condition and their responses to that understanding. Family expressions of meaning include, for example, the conviction that a person sustained by medical technologies will recover, the hope that hospital care can reverse organ-system failure, and the refusal to authorize the withdrawal of treatment. Those expressions are sometimes at odds with health providers' ideas of how best to achieve a good death. Choices that families face, which are constructed for them through the rules and norms of hospital culture (a point that cannot be emphasized enough), often are not relevant to their experience. The desire among health professionals to find some connection with the spiritual dimension of dying patients' lives so that patients may express and fulfill that part of themselves and so that their deaths can be categorized as "good" is important, but it presupposes that persons near death are sentient, responsive, expressive, and able to converse, let alone articulate what can be labeled by them or others as "spiritual needs." This is rarely the case. Lunney, Lynn, and Hogan 2002 delineate four distinct clinical pathways to death among the elderly, only one of which is reflectively acknowledged by patients (and by health providers) as a "dying trajectory" so that death can be anticipated and, perhaps, supported by the health care team (see also Lynn 2001). The other three clinical pathways they describe, which together represent more than half of Medicare patients at the end of life, do not, by their very structure, provide much, if any, opportunity for addressing spirituality in particular, or the meanings surrounding life's close more broadly. Those three pathways include: (a) a small percentage (7%) of persons who die suddenly; (b) a larger group (16%) characterized by congestive heart failure and chronic lung disease, for whom prognostication and thus end-of-life planning is known to be difficult (see also Lynn, Harrell, Cohn, Wagner, and Conners 1997); and (c) the largest group (47%), characterized by extreme frailty, including the dementias. Only 22% of the Medicare decedent sample described by Lunney and colleagues could be characterized in advance of death as "terminal." The other three patterns of dying serve to underscore the difficulty of assessing meaning, spirituality, religiosity, or suffering through direct questioning of the patient; through engaged, reflective conversation with the patient; or through unequivocal statements by family members about what a patient wants at the end of life. Most persons in those three groups either are not known and are not assumed to be near death, with the result that the end of life and its meanings are not on anyone's agenda, or are unable to express what is important to them. Lynn and colleagues 1996, Lynn and colleagues 1997, Christakis 1999, and others have written about the difficulty of prognostication when death is near. One common result of that inability to recognize death's approach is the adherence to restorative treatment regimens sometimes almost to the moment of death. The ubiquity of the high-technology mechanical ventilator and the low-technology feeding tube exemplifies common treatment strategies that result from the inability to clinically predict and acknowledge death. The well-known "revolving door patient"—very frail, with multiple chronic conditions, who has repeated hospitalizations in the months before death, including stays in the intensive care unit—is emblematic of the cultural confusion about how we sometimes attend to the end of life. Aggressive treatment to ameliorate symptoms frequently trumps the broader picture of final decline and person-centered care to prepare for death (Kaufman 1998). In order for that picture of inevitable decline to be acknowledged and then translated into palliative care, health providers must consider, all at once, the following: the ultimate trajectory of the disease, medical goals in the context of decline, awareness that the end of life is near, and the interests of the person who is a dying patient. A "time for dying" (Glaser and Strauss 1968)—with all that idea implies for responding to the humane, facilitating closure of a life, and allowing a space for finitude and the transcendent—is difficult to create for the majority of persons who actually are near death, especially within the existing culture and structure of the American acute care hospital. Many variables contribute to hospital trajectories in which dying is not acknowledged or is not planned. At least five stand out as particularly recalcitrant: (a) the general effort to employ and reap the benefits of life-sustaining treatments, even in the face of extreme frailty and overwhelming disease; (b) the priority given by physicians, nurses, and families to symptoms of disease exacerbation that can be treated aggressively and immediately, regardless of the age and frailty of the patient; (c) family anxiety and surprise that death may be near and their hopes for the patient's recovery, which are often uninformed by the seriousness of the disease; (d) the fact that family cannot usually plan for "a good death" in terms that health providers request; and (e) the fact that patients rarely articulate to family or physicians their desires either for life prolongation by technological means or for the cessation of treatments. It is impossible and would be reductionistic to cite one activity, procedure, policy, or player as ultimately responsible for diverting health professional attention away from the dying patient as a person or failing to pay primary attention to the meanings, for the patient, that surround dying. The compelling nature of these five variables thwarts our ability to elicit and then address meanings at the end of life. Yet one optimistic finding stands out clearly from my own research and that of others: Despite the presence of these structural and cultural obstacles to what hospital personnel consider planned and thus dignified deaths, health professionals do struggle mightily to interpret what the patient would want in the way of treatments when she or he is critically ill and to operationalize humane dying scenarios. But, those tasks are rarely straightforward. Three examples from my own research will illustrate how one of these variables, family hopes and perceptions, is often played out and how multiple and conflicting meanings are brought to bear on the care of dying hospital patients. 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