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1 Introduction Hospices have played a critical role in transforming ideas about death and dying. They emerged in the late 1960s, a time of growing concern about the use of aggressive, high-­ tech treatments at the end of life. The hospice movement views death as a natural event and seeks to enable people approaching mortality to live as fully and painlessly as possible. Its founder was Florence Schorske Wald, the former dean of the Yale University School of Nursing , who was committed to advancing social justice and applying the psychoanalytic thought that had begun to transform her profession. Wald’s remarkable study of terminally ill people and their families occupied a central place in her campaign to establish the first U.S. hospice. Because the study never was published, it has received little attention. Fortunately, however, Yale University ’s Sterling Memorial Library has preserved the notes of the researchers’ interactions with patients and relatives as well as their discussions of the cases with other health professionals and investigators .Although some records are missing,the extant ninety files provide a wealth of information that sheds new light on hospice history.1 In a 1986 article titled “The Hospice Movement: Institutionalizing Innovation,” I noted that the early U.S. hospice movement expressed a number of ideals that distinguished it from the established health care system. As hospices grew in number and popularity, however, they were gradually incorporated into the mainstream and lost their uniqueness.2 Six years later, “The 2 Prelude to Hospice Routinization of Hospice,” an article by sociologists Nicky James and David Field,made a similar argument about the United Kingdom . The first UK hospices were established outside the National Health Service to encourage innovation, but routinization and bureaucratization soon blunted their distinctiveness.3 Reviewing those two papers, historian David Clark recently asked whether they “betray a somewhat romantic nostalgia on the part of historians and sociologists removed from the daily realities of delivering hospice services”or “grasp the nettle of an issue likely to prove problematic . . . if ignored.”4 The records this book analyzes suggest that both characterizations are valid. Because most early U.S.hospices tried to adhere to Wald’s principles,her detailed notes of her interactions with patients, families, and other health professionals may be as close as we can come to understanding the day-­ to-­ day work of those programs.The records indicate that hospices have departed from their initial ideals not only because they merged with the mainstream but also because those ideals were always difficult to fulfill. But the records also suggest that hospices have long provided a compassionate alternative to high-­ tech hospital care that is still desperately needed. Wald launched “The Nurses Study of Dying Patients and Their Families” (later renamed the “Interdisciplinary Study of Dying Patients and Their Families”) soon after returning from London in 1968. There she had visited St. Christopher’s in the Field, the first modern hospice, founded by social worker, nurse, and doctor Cicely Saunders. Wald envisioned the study as the first step in founding a similar facility in the United States. In 1974, Hospice Inc. (later the Connecticut Hospice) opened in New Haven, Connecticut , providing home care services to people with a limited life expectancy, a primary caregiver at home, and a cancer diagnosis . Six years later, the hospice established an inpatient facility in Branford. Following Saunders, Wald asserted that the suffering of dying people had social and emotional components as well as physical ones. As a result, she assembled an interdisciplinary team to help her conduct the research. The initial members included another Introduction 3 nurse, a pediatrician, an oncologist, and a Methodist minister. Doctors at Yale New Haven Hospital (YNHH) referred patients to the study; eligibility criteria included a life expectancy of approximately three months and residence in the greater New Haven area. Both patients and their families had to agree to be studied; in return, they received special care. Seven months after the research began, the investigators decided to restrict participants to breast cancer patients on the oncologist’s roster.A $25,000 grant from the U.S. Public Health Service enabled Wald to devote half of her time to the study. As principal investigator, she not only directed the research but also nursed the patients she studied. She usually spent twelve hours a week on patient care but increased her time when death seemed close. By spring 1971, she had cared for twenty-­ two patients and their families. Both Wald and...


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