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“With the benefit of hindsight, it’s clear that Wald’s decision to become involved in the hospice movement was a prescient one that has dramatically improved health care for thousands of terminally ill patients. ” — James E. Mattson |
COVER STORYShe saw HOPE in HOSPICE
by James E. Mattson Long before considering a career in nursing, Florence Wald, RN, MN, MS, FAAN, learned ethics from her parents, Theodore and Gertrude (Goldschmidt) Schorske. Children of German emigrants to the United States, the Schorskes regarded their own lack of opportunity to acquire formal education as no excuse for being uninformed about the issues of the day. “Both of them were very well read,” said Wald. “They read The New Republic, The Nation, The New York Times and The New York Herald-Tribune. They felt it was very important to be politically alert and involved.” That passion was passed on to their children, Carl and Florence, both born in New York City, Florence on April 19, 1917. Carl, the older and, according to his sister, “by far the brightest of my parents’ children,” would pioneer a new way of looking at history. He would share his insights about the interplay of art, culture and history with generations of students at Wesleyan, Stanford, Berkeley and Princeton universities and document his observations in a Pulitzer Prize-winning book titled Fin-de-Siecle Vienna: Politics and Culture. His parents cultivated “a kind of natural intellectuality,” he said. “The concerts, theaters and museums that were their education became the children’s education. ... On my father’s two-week vacations we went by rail and ship on intensive sight-seeing trips: to New England historic sites such as Concord or the old ports of Maine; Civil War battlefields where my grandfather had fought in a New York German regiment; the great cities of the East and Midwest from Philadelphia to St. Paul” (Schorske, 1987, ¶7). It would be a mistake, however, to assume that Theodore and Gertrude Schorske had a fascination for things military. Quite the contrary. Socialist and pacifist in their views, they were disturbed by social injustices suffered by immigrants living in New York City’s Lower East Side and angered by America’s entry in World War I against a Germany their families had only recently departed. Theodore Schorske, vice president of Central Savings Bank in New York City—Deutsche Spaar Bank until anti-German sentiment made a name change advisable—had, according to Wald, “very strong views on economics and what government should provide.” Wald’s father had a Christian background and her mother was Jewish. Both were disconnected, however, from the church and the synagogue. Anticlerical in their views, they embraced the Ethical Culture Movement. Founded in 1876 by Felix Adler, who believed that scientific knowledge had rendered beliefs in a creator God untenable, this secular humanist religion regarded ethical values as relative and man-made, rather than innate and God-given. Despite antithetically opposed cosmologies, faith-based and humanist-based religions often have one thing in common—commitment to social action—and it was against an urban milieu of inadequate housing, unregulated sweatshops and underdeveloped social infrastructure, aggravated by a massive influx of immigrants in the late 19th and early 20th centuries, that the Ethical Culture Movement was born. At a time when there were few government safety nets, “the only place one could turn to for help were private benevolent associations, unions and charitable organizations, most often run by religious groups, Catholic, Protestant and Jewish” (Chuman, 2005, ¶7). One area of social action for the Ethical Culture Movement was settlement houses, the most famous of which was New York City’s Henry Street Settlement, founded by nurse Lillian Wald. [Florence Wald’s late husband, Henry, is not related to Lillian Wald, though his mother did grow up on Rivington Street, the same street where Lillian lived.] “My parents were very much aware of the Henry Street Settlement,” said Florence, “and were great admirers of Lillian Wald.” In 1893, Lillian moved into the Henry Street area and offered her services as a visiting nurse. Later, she opened the Nurse’s Settlement, which started with two nurses in 1893 and grew to 92 by 1913, offering a range of services that included nurses training and other educational programs and youth clubs. In 1912, she founded the National Organization for Public Health Nursing. In 1941, upon completing a bachelor’s degree in physiology and sociology at Mount Holyoke College in South Hadley, Mass., and a master’s in nursing at Yale University in New Haven, Conn., Florence Wald would begin her own nursing career at the Henry Street Settlement. With World War II came more armed conflict with Germany and,
for Wald, internal conflict. Toward the end of the war, Wald’s pacifism was temporarily overcome by the loss of life and injuries suffered in the Battle of the Bulge, and she enlisted for two years as a nurse in the U.S. Army Nurse Corps. Upon discharge, she floundered. For a while, she had a management position in a surgical research service at Columbia University’s College of Physicians and Surgeons, where heart and blood vessel surgery was being developed, and progress was being made in helping at-risk patients survive intensive surgery. “I did try to join the flow of medical technology, but it wasn’t my medium,” said Wald. She vacillated between pursuing a doctorate in physiology and going back to nursing. She chose nursing. Studies out of England had drawn public attention to the suffering of children separated from parents during the war, and Wald became aware of the pain that hospitalized children experienced when separated from their parents. “Working as a staff nurse at Babies Hospital of Columbia-Presbyterian, I and another nurse began allowing parents to feed their children at night and put them to bed. Pediatricians saw for the first time what a difference that made. I began to feel that changes in hospital practices were possible, that I could get back to medical care and make a difference.” In retrospect, that experience foreshadowed Wald’s role in the founding of the U.S. hospice movement. The first hospice created specifically for the terminally ill opened in France in 1842. Thirty-seven years later, Our Lady’s Hospice, operated by the Irish Sisters of Charity, opened in Dublin. The sisters sought to provide a place where patients could die with minimum pain, surrounded by supportive staff, family and friends. Sixteen years later, they opened a hospice in London, known as St. Joseph’s. The modern hospice movement began in 1967 when Cicely Saunders established St. Christopher’s Hospice outside London. Trained as a nurse, social worker and medical doctor, she introduced concepts in terminal care—including pain and symptom control—that she refined over the course of a decade while working as a physician-researcher at St. Joseph’s. [In 1980, Saunders was made a dame of the British Empire. In 1999, she received the Archon Award from the Honor Society of Nursing.] A key element of patient care established by Saunders was pain management designed to get ahead of patient pain with regular and adequate administration of oral medications (heroin and morphine), instead of too-little-too-late injected medications that only added to patient discomfort. Saunders’ recognition of what she called “total suffering” led to identification of non-medical sources of pain and her view of the patient as a whole person, rather than merely a condition or collection of symptoms. Augmenting these elements of care was recognition of the need to help patients prepare for dying and to minister to emotional and spiritual needs of family and friends. In 1963, an important step toward the establishment of hospice care in the United States was taken when Dr. Bernard Lytton, a urologist, invited Saunders to describe her research to medical students at Yale University. Wald was dean of nursing at Yale at the time, but was unable to attend. However, her friend and colleague Virginia Henderson, who had read an article by Saunders, did attend. “When Virginia came back,” recalled Wald, “she immediately cornered me and said, ‘O, you’ve got to have her here. And furthermore, I think what you should do is get just as many people to attend as you possibly can, because she said she could meet us at noon time. So that is what we did.” To make the case for hospice care, Saunders showed before-and-after
pictures of patients and families, their distressed, burdened-down
appearances at the time of admittance and their much-improved
countenances after receiving care. Saunders’ approach to care also addressed other issues that concerned Wald. “See, what Cicely had from the beginning,” said Wald, “was the view that modern medical care, curative treatment and encouraging hope, was not appropriate for persons who cannot be cured. She saw that doctors were not handling the symptoms of the disease carefully enough. They were not aware what the social suffering was, or the spiritual, or the economic. They were giving the wrong treatment for the disease.” “Doctors were unwilling to be straightforward in what they told the patients and the families,” she told one interviewer. “If the nurses stepped in and encouraged the patients to frame their questions so the doctors would answer, most often the doctors would tell the head nurse, ‘I do not want that nurse anywhere near any of my patients.’” (National Prison Hospice Association, 2005, ¶3). “When Cicely came, it was like opening a door where there had been a wall,” said Wald. “That was what hooked me.” Wald was definitely hooked. Following Saunders’ tour of the United States, where she visited 18 hospitals and talked patient care with a wide spectrum of caregivers, the two women began corresponding and soon established a close friendship, a friendship some might not have anticipated, considering their divergent religious perspectives. Saunders’ biographer has noted that “it was not until [Wald] came to know Cicely personally that she realized how important the religious side of the work was to [Saunders]” (du Boulay, p. 223). When asked about that, Wald replied: “Cicely has thought about that a great deal, and her description is that she simply could not have done what she did had she not had a sense of purpose that was transmitted to her as ‘a calling.’ Now that she is at the end of her life [Saunders died 10 days after this interview], she still has that spiritual resource. She used to worry about me, that I wouldn’t be able to do this [work] without having a religious background. Certainly, there is no question that her career has been much more important than mine, but I have muddled through, so to speak, without religious resources, but an ethical framework that includes art and music.” The birth of the modern hospice movement occurred at a time when events in the United States were escalating in a synchrony that Wald regards as significant. “It was a time of protest,” she has stated. “It was a time of protest against the Vietnam War ... but it was also the civil rights movement. Then there began to be talk about patients’ rights” (American Public Media, 2005, ¶3).
For Wald, ethics means doing what is right, not just what is legal, a perspective effectively articulated by William Sloane Coffin, a Presbyterian minister who became chaplain of Yale University in 1958, about the same time Wald became dean of nursing there. In the decade that followed, Coffin became a leader in the civil rights movement and, later, an outspoken critic of the war in Vietnam. Medical students and faculty who participated in civil rights activism with Coffin came back to Yale and began focusing on other human rights issues, including patients’ rights and the role of doctors. As protestors from Yale’s medical campus intermingled with protestors from other disciplines, a cross-culturation process occurred, said Wald, which eventually challenged the long-held belief in medicine that the doctor was the captain of the team. “That was important for nurses,” she said. “The doctors thought they were doing the patients good by not breaking down their hopes, by never telling them what was actually going on and why they were doing what they did.” Deciding that the right of patients to die with minimum discomfort and maximum support from family and caregivers could not be justifiably denied, Wald took what she saw as the next logical step. In 1968, at age 50, with support and encouragement from her husband, Henry, she resigned her deanship and took an appointment as principal investigator of a nurse’s research study of the terminally ill. It evolved into an interdisciplinary study sponsored by Yale University School of Nursing. With the proceeds from a small grant, the research team was able, over a two-year period, to take care of 22 patients in the Yale/New Haven Hospital, in the patients’ homes and in nursing homes. Wasn’t it a major adjustment to resign a secure position as dean of nursing at Yale to pursue a research project with an uncertain future? “One challenge was that my income was diminished,” Wald responded with a laugh. “And I thought it was better for me to do this on a part-time basis than a full-time basis, so my income was even further reduced. My husband was very supportive, and he didn’t have any trouble with that.” In fact, Henry Wald, an engineer and partner in Wald and Zigas Consulting Firm, decided to make his wife’s dream his personal dream. “It was after he met Cicely Saunders,” said Wald, “when we went to England to see St. Christopher’s [Hospice] while it was being built, that he became so interested. It was at that point that we decided that he, too, could make a career change. He sold his part of the partnership and went back to Columbia University to enroll in a remarkable program in the School of Architecture, health facility planning. He wrote a feasibility study that clarified the role of hospice in the Greater New Haven community.” With the benefit of hindsight, it’s clear that Wald’s decision to become involved in the hospice movement was a prescient one that has dramatically improved health care for thousands of terminally ill patients. In 1974, the first hospice in the United States in New Haven, Conn., began providing care. Today, there are more than 3,000 hospices in the United States. Wald is still active in the movement, but these days her focus is largely on prison hospices. “I became involved in prison hospices through Fleet Maull, a prisoner with a 25-year sentence for trafficking drugs, in Springfield Federal Penitentiary in Missouri, a hospital prison. He began to help inmates who were dying and was so good at it that the warden got the Springfield hospice to help train inmates so they could be volunteers.” Today, Maull directs the National Prison Hospice Association in Boulder, Colo., which is developing prison hospices across the United States. Wald, a member of the association’s board of advisers, is active in Connecticut Department of Corrections’ hospices in both men’s and women’s prisons. Until Saunders’ death in mid-July of this year, Wald and Saunders maintained their close friendship, communicating regularly. Even though advanced in years and waging a painful battle with bone cancer, Saunders continued making contributions to the understanding of pain by working with other physicians to keep them informed on what she was experiencing during the course of her illness. On the Saturday before my interview of Wald, the two women had spoken with each other by phone, and Wald had just recently received correspondence from her friend. Before reading an excerpt from that correspondence, Wald explained: “Cicely is really having a hard time right now, but she just finished reading a book, The Stature of Waiting, published in 1982 by W.H. Vanstone. Cicely has always talked about the Garden of Gethsemane, where Christ was awaiting torture and rejection.” From Saunders’ letter, Wald read: “It is something that speaks very clearly to my experiences with patients. When people ask me why is this happening, I can only say that God in loving the world has made himself vulnerable and, at the end of their battered lives, God is alongside them in their suffering through love.” For Saunders, the waiting is over, and she has made the journey for which she helped so many others prepare. Wald will miss her good friend and colleague. Although their spiritual views differed, they had one thing very much in common: They cared about people in pain. By identifying much-needed changes in care of the terminally ill, changes that society embraced, they gave birth to a worldwide movement. RNL James E. Mattson is editor, Reflections on Nursing Leadership. Wald photo: Caryn B. Davis References |
In
1963, Florence Wald, dean of Yale University School of Nursing,
saw a presentation on hospice care and what it had done for patients
and their families in England. It was “like opening a door,”
she said. Once that door was opened, she knew she had to walk
through it.
Euthanasia means a good death. For me, the natural
death is the good death. However, not everybody agrees
with that. In the Schiavo case [in which legal authority
was obtained to remove a woman’s feeding tube],
what the husband thought was a good death and what
the parents thought was a good death were different.
Euthanasia is what the person beholds.