... And a Time to Die: How American Hospitals Shape the End of Life

by Sharon R Kaufman

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New York: Scribner 2005. 400 pp 17 pp references 35 pp notes $28.00

This is an excellent book about a difficult subject: The ambivalent attitudes and approaches to dying in the culture of US hospital settings.

Sharon Kaufman is professor of medical anthropology at the University of California, San Francisco. She teaches students in anthropology, sociology, medicine and nursing. She explored the experiences and views of doctors, nurses, social workers, and occupational, physical and speech therapists, plus over 100 patients who died, many patients who were in critical condition but survived, and patients' families in three hospitals in the San Francisco area 1997-2000. Her contacts with patients were often brief, but quite extensive with their relatives.

Kaufman observed that time was the factor which most influenced many of the interactions and experiences of the participants in the drama of dealing with serious health challenges. Institutional pressures on the staff demanded that care be provided in the most efficient and economic manner. The staff were constantly faced with decisions around the timing of interventions and with the pacing of the therapies and their effects and consequences. Staff had to deal with obstacles to the most efficient provision of care and with the timing of death. Patients were often unconscious, leaving relatives to have to make extremely important and difficult decisions - ones that they would have to live with for the rest of their lives, and ones that might set them in conflict with other family members who could not be present at the time.

The control that modern medicine has over the timing of death brings the patients, staff and families into discussions and negotiations over physical, psychological, relationship, moral, ethical and religious issues and concerns. When there is no living will/ directive from the person who is ill to guide the medical facility and family regarding decisions about when and whether or not to activate resuscitation efforts and life support systems, an urgent situation is created in which decisions of major consequences must be taken.

Struggling to find ways to either stave off death or arrange for "good' deaths, hospital staff, together with the powerful technologies that are part of hospitals today, can also allow a third possibility - a prolonged hovering at the threshold between life and death. Instead of death, the hospital opens up an indefinite period of waiting during which patients do not cross that threshold until it is decided when it is time for them to die. (p. 4) 

Neither the management of the threshold nor the way death occurs in the hospital is inevitable. Both are complicated cultural fabrications. Our understandings of how hospital death occurs and is staved off, and of what is "right' and "wrong' with either, are determined by historical trends in politics, medicine, and social life. Those include the changing power relations among the institutions of science, religion, and the law; the ways in which biomedical technologies have come to be used and valued; developments in Medicare and other federal regulations and policies; the transformation over the twentieth century of ideas about the body, the person, and old age; and the evolving roles of medical specialists, ethicists, legal experts, managers, hospital patients, and families in that transformation. (p. 9)

I was studying phenomena characterized as problematic in my own society, and I was observing activities considered troublesome yet ordinary, expected yet feared. (p. 11)

Kaufman shows great sensitivity to the struggles of all parties to these deliberations, as well as her own struggles with how to deal with the feelings that are raised under the tensions of having to make life and death decisions. What makes this book so valuable is the balance between considered presentations and discussion of the issues and examples of the actual dilemmas faced by all parties in these situations. Here is one of the many moving vignettes Kaufman reports:

For everyone in the room, the pressure on Mrs. Tran to "decide' to withdraw life-sustaining treatments from her mother is palpable. Once medical personnel are convinced that death is imminent or inevitable (even though the time of death cannot be predicted with accuracy), the haste with which the dying transition is initiated is important to the system. Mrs. Tran is obstructing the proper flow of events along the pathway by refusing to "decide' to withdraw treatments.

The conference ends and everyone stands up to leave. Mrs. Tran tells me she is going to leave the hospital for a while. She is not sure what the staff are going to do, but she is going to let her mind rest and not think about thisÑat least until she comes back in the evening. The social worker says that someone always takes the heat about putting pressure on families, and this time it was her turn, but she didn't mind. The nurse case manager goes to see Mrs. Vinh, who has obviously taken a turn for the worse. The case manager thinks the patient will die quite soon.

Two hours later Mrs. Tran leaves me a telephone message. She is crying as she says, "My mother just passed away at 7:30 p.m., and she had the elegance to pass away without her children making any decision."

For the doctor, Mrs. Vinh was not alive in any meaningful sense (she lacked any expressive capability), and that "truth' was indicated by all her bodily signs, including her apparent lack of consciousness. For him, Mrs. Vinh's general conditionÑvery near deathÑtrumped the vagaries of consciousness. For the patient's daughter, Mrs. Vinh was very much aliveÑshe even died elegantly. The patient's son wanted to know the operational definitions of "quality of life' and "let nature take its course' vis-ˆ-vis his mother's condition, since the doctor introduce those concepts. He needed to learn whether her condition could be classified as life. Any attribution of suffering would flow from that designation, as would any decision on his part about terminating life. The doctor made the ambiguous point that though the life of the patient is questionable, the family is keeping the patient (or at least her body) alive, and that is an unnatural (and perhaps pain-causing) thing to do. The patient's son remarked to the assembled group that if staff was going to place the responsibility for actively terminating his mother's life on the family, then they needed to meet as a family to gather support for such a profound choice. Such talk between hospital staff and the family about the patient's condition and the need to move things along is a standard part of the movement imperative. This particular meeting, like many I observed, ended with the typical doublespeak that is born when the movement imperative is coupled with hospital liability concerns: "Please (we ask you) move along smoothly, but we will (only because we must) accommodate your choice to remain recalcitrant." (p. 172-173)

An ICU nurse reported that the common advice given by her co-workers was to focus on clinical aspects of patient care, leave the decisions to the family, and not to bring any of the feelings home. This nurse shared with Kaufman:

Much suffering seemed so incredibly unnecessary, like octogenarians with living wills discovered after the fact, or aggressive surgeries on debilitated and/or chronically ill people who had not a fighting chance of surviving these insults to their bodies and souls.

For two years this went on [experiences that she "didn't bring home with her'], until one rainy February when my husband and I checked into an inn by the sea. I thought I was relaxed and happy, but that night I dreamt of all those patients I had seen die, whose bodies I had cleaned and bagged. One by one I looked at each of their faces, recognizing their souls, letting each of them go, floating out over the ocean. I awoke with a detailed memory of my dream, feeling truly at peace with my soul. The advice to not become involved and to form a tough, repellent barrier against my patients had backfired. What I learned that day was to enable me to know and demonstrate true compassion in my work. To be truly human you must experience life bravely, and facing issues of death and dying takes courage. When a human being dies, everyone present is affected, whether they want to be or not. I now let their spirits come in and trough me, recognizing their passing, then consciously letting them go. (p. 205)

This powerful book should be read by every student and caregiver who deals with seriously ill patients, as well as by families with people who are approaching the last stages of their lives. It would make an excellent focus for caregiver discussion groups.

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