Thomas R. Egnew
Washington, United States
|St. Christopher’s Hospice|
The twentieth century produced an extraordinary evolution in modern medicine. Burgeoning research and the rigorous application of the biomedical model generated remarkable advances in the diagnosis and treatment of disease.1 Refinements in immunization decreased morbidity and mortality from common infectious diseases and the development of antibiotics provided the means to change disease outcomes. An “age of cure”2fostered the search for “miracle cures”3 while medicine increasingly specialized as technology evolved. With the successful transplantation of a human heart in 1967, the triumph of medicine over death reached a metaphorical milestone. The momentum for invasive medical interventions to prolong life and forestall death grew exponentially as the century progressed.
Yet, 1967 wrought another noteworthy advancement in medicine. To much less fanfare than a transplanted heart, St. Christopher’s Hospice opened in Sydenham, England. This is the story of that remarkable hospital and its visionary founder. Cicely Saunders, a nurse and medical social worker, felt troubled by her observations of the unremitting pain with which cancer patients were dying. Sensing a personal calling to intervene, she desired to found an institution to better support dying patients. This was to be an organization that not only provided compassionate care but also conducted research dedicated to nurturing dying patients and their families. Her vision solidified in 1948 when a patient, David Tasma, left her a legacy of £500, saying “I’ll be a window in your home.”4 Following her calling, Saunders and St. Christopher’s established end-of-life care as a legitimate form of medical service delivery. The importance of her work was such that Saunders was appointed a Dame Commander of the Order of the British Empire, awarded the Templeton Prize for affirming life’s spiritual dimension, and presented the Conrad N. Hilton Humanitarian Prize on behalf of St. Christopher’s. After receiving Tasma’s legacy, it took nearly twenty years before St. Christopher’s became a reality. Having been told that she needed to be a physician in order to influence how medicine approached end-of-life care, Saunders entered medical school at the age of thirty-three. Once qualified as a doctor, strategic planning took another ten years,5 during which she researched pain control at St. Joseph’s Hospice in East London, began to publish, and travelled widely to learn from those institutions doing hospice work elsewhere. Having experienced hospices staffed by religious orders, and given her deeply held Christian beliefs, Saunders struggled with whether St. Christopher’s should be a religious community in order to support the commitment to caring she observed in the nuns with whom she worked. Eventually, St. Christopher’s was organized as a charitable trust and named after the patron saint of travelers. But the discernment process was essential to framing the hospice with spiritual values. These were reflected in a document, Aim and Basis, that defined St. Christopher’s as a religious foundation based on the Christian faith in God.4 Knowing that a hospital with the mission to assist patients to die comfortably was controversial, Saunders also used this time to cultivate the social, political and personal contacts essential to supporting a revolutionary institution and assuring success.
From its inception, St. Christopher’s sought to meld the care and compassion of a spiritual organization with a serious medical research program and a mandate for multidisciplinary end-of-life care education. This mission was predicated on Saunders’s conception that patients at the end of life often experienced ‘‘total pain,’’ distress that involved physical, psychological, social, emotional, and spiritual components.6 Managing total pain required a multidisciplinary approach to meet the varied and complex needs of dying patients and their families. Research to determine optimal strategies for symptom management and education to teach the skills of effective hospice care were necessary to competently treat total pain and alleviate suffering.
In 1967, little was known about the optimal treatments for the symptoms accompanying impending death. The staff of St. Christopher’s initiated systematic research to determine the most efficacious approaches to managing terminal illness. They explored the management of pain and other symptoms and developed “the single most important advance in end-of-life care that has ever been made.”7 A one-page sheet, entitled Drugs most commonly used at St Christopher’s Hospice, prescribed the scheduled dosing of oral opioids to control pain in terminally ill patients, thereby sparing them the agony of receiving analgesia only when their pain became unbearable. Other research focused on the social and psychological impact of hospice care upon patients and their spouses,8,9 explored the levels of anxiety and depression amongst hospice patients,10 and studied the medical management of physical conditions such as malignant intestinal obstruction.11 The results of this robust research agenda greatly improved and refined the medical management of dying patients while demonstrating the benefits of hospice care.
To fulfill its educational mission, St. Christopher’s offered an active hospice-care educational program to professionals from all over the world. Saunders also travelled widely to share the work being done in Sydenham and to learn about end-of-life care efforts elsewhere. In 1969, St. Christopher’s pioneered home-based hospice services to meet the needs of patients wishing to die at home. In 1973, Balfour Mount, a Canadian urological surgeon, visited St. Christopher’s and returned to Montreal to establish what he called a “Palliative Care” unit at Royal Victoria Hospital.7 The phrase stuck as the name for the new medical specialty, and St. Christopher’s has continued to teach the intricacies of palliative care to multiple disciplines–physicians, nurses, home visitors, social workers, psychologists and chaplains. The quest to remedy the problem of pain in dying cancer patients resonated with medicine’s ancient goal to relieve suffering and inspired a worldwide movement to provide compassionate palliative care services.
Revolutionary concepts impact areas beyond their immediate purview. When St. Christopher’s opened, most patients died in closed, isolated hospital settings where death was not discussed and end-of-life care was minimal.12 The work at St. Christopher’s helped redefine death as something other than the failure of medical science and, coupled with research that revealed the dying were eager to talk about their experience,13,14 challenged the ad hoc conspiracy of silence about impending death. Subsequently, issues of death and dying became popular topics for public discussion, living wills and advance directives began to be promoted, and pathographies written by patients suffering terminal illnesses grew popular. “The nice thing about a hospice,” wrote columnist Art Buchwald about his experience of hospice care, “is we can talk about death openly.”15 By exploring the questions, concerns and desires of dying patients and their families, St. Christopher’s encouraged dialogue about impending death and empowered patients to actively direct their care.
Moreover, many of the principles of care pioneered and developed at St. Christopher’s eventually permeated mainstream medicine. The advances in pain management documented at St. Christopher’s have influenced conceptions of the treatment of pain for non-terminal, chronic conditions. In developing the model of end-of-life care that she promoted, Saunders insisted that patients were “the real founders of St. Christopher’s and thence the hospice movement.”16 Given palliative care was defined and directed by patients’ desires, Saunders pioneered a patient-centered model of care that was later proclaimed a transformation of the clinical method and is now a hallmark of quality patient care.17 The concept of an integrated medical service delivery system providing multidisciplinary care – central to St. Christopher’s founding and operation – is presently described as a “patient-centered medical home.”18 And care that addresses all aspects of the patient’s total pain experience is currently described as “whole-person” care.19 All these contributions to medicine trace their roots to St. Christopher’s Hospice.
Yet, St. Christopher’s influence has even greater ramifications in the context of contemporary medicine. As the twenty-first century progresses, the seductive power of technology and the quest for efficiency have made medical care increasingly impersonal.20,21 Technology reduces uncertainty and unequivocally contributes to medicine’s power to prevent, detect, treat and manage disease. But it also distances clinicians from patients by focusing attention on the physical aspects of disease to the exclusion of the personal experience of illness. “Since technology deprives me of the intimacy of my illness, makes it not mine but something that belongs to science,” wrote cancer patient Anatole Broyard, “I wish my doctor could somehow repersonalize it for me.”22 To depersonalize the patient’s illness experience is to turn away from the patient’s suffering, while the press for efficiency undermines the trust that renders the caregiving relationship sacred.21 The amelioration of pain and suffering is the heart of caregiving and grounds medicine in its roots as a moral enterprise.23 Therefore, medicine cannot abandon caregiving without losing its soul.
Resisting these trends of modern medicine, the palliative care model developed and practiced at St. Christopher’s is steeped in caregiving. St. Christopher’s Aim and Basis declares that all who serve in hospice contribute to caregiving, emphasizes the essential spirituality of caregiving, and proclaims that “love is the way through” when giving care.4 Thus, St. Christopher’s embraces the moral dimensions of medicine at the “hallowed ground”24 of the bedside and heralds medicine’s obligation to alleviate suffering. David Tasma’s legacy eventually became a window that allows light into the foyer of St. Christopher’s Hospice. And St. Christopher’s, by advancing scientific palliative medicine while honoring compassionate caregiving, illuminates medicine’s moral calling to combat suffering with “a special form of love.”25
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THOMAS EGNEW, EdD, LICSW is a family medicine educator in a community-based, university-affiliated family medicine residency program, where his career has spanned five decades. His interests lie in teaching about the healing power of the patient-physician relationship and the role of the physician as healer. He has conducted research into issues of palliative care and medical student education about suffering and has presented nationally and internationally on these topics. In 2007, he was a Fulbright Senior Scholar and Visiting Professor in the Department of General Practice, Dunedin School of Medicine, Dunedin, New Zealand.