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a Institute for Health and Aging, University of California, San Francisco
Correspondence: Sharon R. Kaufman, PhD, Institute for Health and Aging, Box 0646, University of California, San Francisco, CA 94143-0646. E-mail: Kaufman{at}itsa.ucsf.edu.
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. Although health providers hold their own meanings about good dying practices in the hospital context, family members are preoccupied not with good dying, but with other concerns, especially their hopes for the patient's recovery, their long-standing relationship with the patient, and their sense of overwhelming responsibility for critical decision making. Spirituality and religiosity may infuse those preoccupations in a variety of ways, but feelings about the presence of God, a sense of the transcendent or awareness of the life force within the patient, for example, are not necessarily articulated or apparent. Sometimes patient or family expressions of spirituality are at odds with other meanings that circulate within the health care delivery system.
Mr. Brown (all names are pseudonyms), age 89, arrived at the emergency department (ED) from a nursing home with a diagnosis of myocardial infarction and aspiration pneumonia (Kaufman 1998). He was intubated in the ED and sent to the intensive care unit (ICU). On the ninth day of his stay, the social worker invited me to attend a team conference with Mr. Brown's wife. The medical staff was attempting to "wean" or remove the patient from the mechanical ventilator—first by lowering the amount and pressure of oxygen and then by withdrawing the tube from his throat and lungs so he would breathe on his own. They were unsure how to proceed if he needed to be reintubated sometime later to survive. Would the patient want to be reintubated? Did his wife know his wishes? The team wanted to meet with Mrs. Brown to ascertain the patient's view about life prolongation. Two physicians, a social worker, a chaplain, and I were present during the meeting with Mrs. Brown, who said, as soon as she entered the room, that she had not slept much and that she was a worrier. She was slim and frail-looking, in her mid-to-late 80s. She talked freely. We learned from her that she and her husband had been married 56 years; that he had owned his own business for many years; that she had cared for him since his stroke 30 years before; and that, she said, "He's the only thing I have, and I want to hold on to him as long as I can. The last thing he said to me was, ‘I want to live.’" She informed the group that he was Irish and strong-willed, that she was Italian and equally strong-willed, and that she needed him to come home and fight with her. Here the medical team smiled. She talked a great deal, but the team did not learn Mr. Brown's wishes about life prolongation in that specific context—on a mechanical ventilator in the ICU.
One of the physicians said to Mrs. Brown, "We have a little bit of a dilemma. He's not an optimal candidate to completely remove the tube right now. Sometimes it's hard to decide when to pull the tube out, but he could die if we do it. We're close to the time to do it, though, and we need to know what to do. Would he want to die if he can't breathe on his own?" Mrs. Brown replied, "I'll leave it to God's will. I'm going day by day." The social worker commented, "We have some trouble now with God's will and medical technology. Medical technology can prolong life past the time when the person would die on his own." Mrs. Brown did not respond. In fact she thanked the staff for everything they were doing and left the room. The staff remained perplexed about what the patient would want. The next day, Mr. Brown was removed from the ventilator and he was able to breathe on his own. He was moved to a medical floor. Over the next 3 weeks, although he was receiving medications, oxygen, and nutrition through a feeding tube, his condition deteriorated. During that time Mrs. Brown was too anxiety ridden to return to the hospital. Mr. Brown died following a 1-month hospital stay. For most of that time, the staff, who had predicted Mr. Brown's death despite the treatments they were giving him, could not facilitate what they considered to be a good death because they received no direction from the family.
In contrast, the family of Mr. Thomas was absolutely clear. But, their conception of the person, the moral, and the religious frustrated the health care team at every turn. Mr. Thomas, age 72, was surrounded by a large, close, and religious African American family. He had endstage renal disease, vascular disease, coronary artery disease, lung disease, and diabetes. He had been on dialysis for 3 years. At the outpatient clinic on the dialysis machine, he suffered a cardiac arrest. The nurses resuscitated him, he was taken to the ED, and according to his primary care physician, he "arrested again, at least one, probably two more times, and had to be shocked a total of three times. He wound up in the intensive care unit in a coma." Mr. Thomas was receiving mechanical ventilation and would not survive without it. The family came from all over the country to be at the bedside.
The primary care physician told the family that they should think about what the patient would want. He then told them what he wanted—to remove the mechanical ventilator support and let Mr. Thomas die. He wanted to discontinue dialysis and take Mr. Thomas out of the ICU and put him in a room where he could die with his family present. The physician told me, "I actually thought that they were pretty much in agreement with me that he probably wouldn't want to continue and that he would want life support stopped, and that's what we ought to do."
To the doctor's surprise, after the family discussed the situation among themselves, with their minister and with a relative who was a minister, they were "unanimous" the doctor said, "in wanting to continue all life support, including CPR [cardiopulmonary resuscitation], if he should arrest. I was very surprised after the long discussion we had about this. They wanted ‘to go for life,’ as the wife said... She, in particular, could not fathom the idea of stopping any treatment that would hasten his death. And that's exactly the way she sees it—as tantamount to euthanasia." The physician continued, "There's only one relative who talks about miracles. The wife understands that he is dying, knows that that may happen any time, is not expecting miracles, but just cannot affirmatively take that step to end his life."
Other members of the medical staff, who thought that dialysis treatments and ventilator support should be withdrawn from the patient immediately, found the family's opinion ethically troubling. "Some of the staff put it in moral terms," I was told by Mr. Thomas's doctor, "that it was immoral what we were doing to him. Just like the moral terms the wife used when she said it was immoral to stop." That physician brought together several members of the hospital ethics committee, some of the treatment physicians, and several family members in the hopes that an open discussion would lead to resolution. He hoped first, that the family could be persuaded at that time to stop life-prolonging treatment. If that was not possible, he hoped that the medical team could, through learning the family's perspective of the situation, feel more comfortable providing care to a permanently comatose patient. Neither of those hopes were realized.
One month and 4 days after he was admitted to the hospital, Mr. Thomas died following a cardiac arrest. His physician gave his version of the final moments: "Mr. Thomas died after a longish CPR—truly a ‘full code.’ Not a peaceful death. But clearly the death his loved ones chose for him by requiring that all efforts be made to keep him alive. Of all the procedures we put him through, this was the worst, something I wanted to prevent from happening. The family, particularly his wife, knew my wishes. She and the rest of the family considered them, I think, but couldn't let go even that much—to have a DNR [Do Not Resuscitate] order written. I spoke with the wife just after she arrived in the ICU after Mr. Thomas died. She was tearful and appreciative of everything we had done to help keep him alive. She knew we had tried our best. She and her family have to live with what happened, and it appears that giving ‘life’ our best shot is some consolation to them."
In the case of Mr. Brown, the health care team was perplexed by Mrs. Brown's lack of clarity about the meaning of the patient's medical condition and about the implications of removing the mechanical ventilator. Mrs. Brown's silence on a topic of importance to the medical staff prevented the team from enacting a treatment plan that acknowledged and prepared for death in a way they considered dignified. In the second example of Mr. Thomas, the large family's desire to prolong life at all costs, despite the futility and suffering the hospital staff perceived, created discomfort all around and led to the kind of death many people claim not to want. In the following example, the consideration of meaning for the family of the patient is trumped first, by pressure the hospital staff felt to enable a certain kind of death and, second, by the inability to prognosticate accurately about the timing of death. This final example depicts the "extreme frailty" trajectory outlined by Lunney and colleagues 2002, the most common end-of-life pattern they discern. It takes place outside the ICU, on a medical ward.
Mrs. Vinh, age 84, an immigrant from Vietnam, had been diagnosed with Parkinson's disease 6 years before. In the months before her hospitalization, Mrs. Vinh could not walk. It took 3 or 4 hr to feed her each meal. She had become incontinent and her physical condition and mental state were deteriorating. But she was still responsive. Six weeks before I met the patient and her daughter in the hospital, the attendants at home as well as the doctors, nurses, and speech therapist who were caring for Mrs. Vinh all felt she was not getting enough nutrition. They agreed without debate that Mrs. Vinh needed a feeding tube, a gastrostomy tube, and the tube was inserted. Aspiration pneumonia and the migration of the tube followed, and Mrs. Vinh was admitted to the hospital for surgery to replace the tube. "This was a very hard decision," the patient's daughter said, "because we knew she was a high-risk surgical patient." As Buddhists, as Asians, she told me, adept at quickly translating her way of knowing into language that health care providers could easily understand, that decision was not based on a quality-of-life consideration—"My mother hasn't had any quality of life for two years," she said. The family wanted to prolong Mrs. Vinh's life. On the other hand, they did not want to do anything that would create pain and suffering. They had decided previously that Mrs. Vinh would not be put on ventilator support if she could no longer breathe on her own, and she would not be subjected to resuscitation if she had a cardiac arrest. Other than that, her life should be maintained.
The surgery was not complicated, but in the days afterward, Mrs. Vinh was not doing well, although she was receiving antibiotics, food, and morphine through an intravenous line. She had not returned to her previous physical condition and mental state as the medical team and family had hoped. The various physicians treating her wrote in her medical chart, "end-stage care," "dementia and chronic vegetative state," and "continued to deteriorate." Mrs. Vinh's daughter expressed a different view, with its own ambivalence. She said, "My mother is a fighter. She wants to live. I know this about her very deeply. All of this talk about quality of life is not relevant. She wants to live, even in this condition, that is why she struggles to breathe so much, that is why they gave her the morphine, to make her breathing easier. But, I don't know. I want her to live, but I want her to be comfortable."
The medical team was unanimous in wanting to provide comfort care to facilitate a peaceful death rather than continue to sustain the patient's physiological existence. They assumed that Mrs. Vinh was not conscious and knew she was at the end stage of her disease. They saw no reason to prolong her dying and perhaps be the cause of her suffering. Mrs. Vinh's physician and the hospital social worker called for a family conference to see whether they could move things along by talking with the family about withdrawing care and letting the patient die. At that meeting, which the patient's daughter considered an attempt at manipulation, she and her siblings responded to the physician's opening remarks by asking whether the patient was suffering, whether she was conscious, whether she was, in fact, alive and finally, what "letting nature take its course" meant. The physician, an immigrant from China, answered each question thoughtfully as best he could, repeating that the patient would die soon, probably in the next few weeks, regardless of what they did, that she had no quality of life, and that he would recommend stopping the intravenous feedings and antibiotics. The complex message received by the family was first, that they were keeping their mother alive, although it was not a life and second, that it was their responsibility to make a decision as quickly as possible about her fate. Mrs. Vinh's daughter, particularly, sensed enormous pressure from the health care team, especially when the social worker asked the family how much time they needed to decide either to withdraw life-sustaining treatments or to take the patient home with oxygen.
Mrs. Vinh's daughter said, "If we withdraw everything she'll die—correct? She still has living brothers and sisters. Maybe they'll feel that isn't right. That's a big decision... This is a life and death decision. You're saying if we leave everything she'll die slower. If we remove everything she'll die faster. I am ultimately the one who has to make a decision. We want her home." The pressure on the patient's daughter to decide something—but hopefully from the staff point of view to withdraw life-sustaining treatments immediately—was palpable in the small, airless conference room. After the meeting, Mrs. Vinh's daughter told me she was going to leave the hospital for awhile, to clear her head and not think about things. Mrs. Vinh died 2 hr later in her hospital bed, before her family "chose" anything.
I observed scores of families faced with what they perceived to be pressure to withdraw life-support measures from a relative. Those families felt they were being asked "to decide between life and death," as Mrs. Vinh's daughter stated, as if those two notions were equally weighted, as if "decision making" at the end of life was either hoping the patient would return to the condition she was in before the medical crisis and thus not making any choice or, instead, determining that the patient should no longer live because her condition was not valued and was not "life." Those are powerful meanings, and I was aware of them often. They are very different from the reasoning of health professionals. Although medical staff members do not intend to put families in such binds, families, as in these three examples, feel forced to weigh their hope for some kind of recovery against the medical team's prognosis of the nearness of death. And then, families feel pressured to authorize the death of their relative by allowing the staff to discontinue the drugs and machines. Giving permission for facilitating death is sometimes, as in the cases of Mr. Thomas and Mrs. Vinh, interpreted as causing death, as being solely responsible for it. It is ironic that, in the hospital setting, families are the players with the least knowledge—about disease processes, about the physiology of decline, and most of all about hospital rules and policies—yet they are burdened with what seems to them untenable responsibility. It is no wonder that some families avoid making any decisions at all and instead invoke the well-used phrases, "I'll leave matters in God's hands" or "wait for a miracle." Health professionals sometimes invoke that same language, but for the opposite purpose, that is, when they want to convince families to withdraw treatments.
These examples from ethnographic research are intended to ground the notion of "meaning" both in the complex cultural worlds of persons who hold strong feelings and ambivalent desires, and in the rules and norms of institutions that guide medical practice in the hospital. "Meaning" not only is located in the patient, but also resides in the family, in the health care provider, and in the communication among them as well. Its expression will emerge in negotiations about care and about "the right thing" to do. What constitutes "the religious" or "the spiritual" may not be distinguishable from the articulation of moral convictions, the murmuring of desperate hopes, or the expression of fear and confusion. These examples show that the broadly conceived yet sometimes abstract societal ideal of "humane" dying may be challenged by actual family perspectives—be they clear-cut or indecisive, identifiable as specifically religious or apparently secular. They are one feature of how vulnerability at the end of life is engaged and one expression of a variable that contributes to the ways in which hospital deaths occur. A useful strategy for health professionals concerned with making death "better" is to seek meaning in its multiple end-of-life locations, which include the life course and cultural world of the patient, the hopes and moral understandings of the family, the convictions of health professionals about comfort care, and the institutional pathways of treatment through which decision making is conceived.
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Acknowledgments |
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Received for publication September 17, 2001. Accepted for publication May 10, 2002.
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