Hospice in Historical Perspective
Some commentaries on hospice history, particularly from inside the hospice movement, are inclined to seek ancient roots for what is actually a modern phenomenon. The scholar Cathy Siebold, for example, notes: "The Crusades, which began late in the eleventh century and continued for several hundred years, are a milestone in hospice history" (Siebold 1992, p. 16). These connections between the past and the present contain a powerful symbolic message. They suggest that modern hospices are rooted in deep and ancient traditions of compassionate care that go back to earliest civilizations. Yet they tend to lack historical veracity. It is inaccurate, for example, to draw too close a parallel between places called hospices in early times and those carrying that name in the twenty and twenty-first centuries. The former contained a broad spread of the diseased, the poor and the downtrodden, cared for over the longer term. The latter have tended to focus on the relatively short-term care of those close to the end of life and especially those dying from malignancies. No doubt in human societies going back over two millennia or more there have existed individuals, such as Fabiola in the fourth century, who patronized and nursed the sick and dying; but scholars should be cautious in seeing her as someone who prefigured the charismatic leaders of the modern hospice approach, developed in the second half of the twentieth century.
A review of a more recent period reveals the first concentrated efforts to give institutional care to dying people. For this, the nineteenth century—a time of great hospital building, which produced in turn a diminution in concern for those at the end of life whose condition was beyond cure—is the place to begin. At this point in time, both the bereaved and the medical establishment noted the first signs of death as a medical failure. The dying were no longer welcome in the hospital, and therefore philanthropic and charitable endeavors led to the creation of special institutions, some of them called hospices, which sought to provide care and sanctuary to those nearing death.
The Nineteenth Century
From the beginning of the nineteenth century it is possible to identify certain important developments in the care of dying people, several of these led by women. The young widow and bereaved mother, Jeanne Garnier, together with others in similar circumstances, formed L'Association des Dames du Calvaire in Lyon, France, in 1842. The association opened a home for the dying the following year, which was characterized by "a respectful familiarity, an attitude of prayer and calm in the face of death" (Clark 2000, p. 51). Jeanne Garnier died in 1853, but her influence led to the foundation of six other establishments for the care of the dying between 1874 in Paris, and 1899 in New York. In both of these cities modern-day palliative care services exist that originated directly from the work of L'Association des Dames du Calvaire.
Mary Aikenhead was born in Cork, Ireland, in 1787. At age twenty-five she became Sister Mary Augustine and was established almost immediately as Superior of a new Order, known as the Irish Sisters of Charity, the first of its kind in Ireland to be uncloistered. The Order made plans to establish a hospital. Three of the sisters went to Paris to learn the work of the Notre Dame de la Pitié Hospital. In Ireland they opened St. Vincent's Hospital in Dublin, in 1834. Following many years of chronic illness, Mary Aikenhead died in 1858 at nearby Harold's Cross. Fulfilling an ambition that she had long held, the convent where Mary Aikenhead spent her final years became Our Lady's Hospice for the Dying in 1879. The Sisters of Charity followed it with others in Australia, England, and Scotland, all of which exist in the twenty-first century and are run by the Order as modern palliative care units.
In the United States, Rose Hawthorne had experienced the death of a child and watched her friend, the poet Emma Lazarus, die of cancer. During the late 1890s she organized a group of women known as the Servants of Relief of Incurable Cancer. When her husband died she took religious orders in 1900, under the title Mother Alphonsa, and formed an order known as the Dominican Sisters of Hawthorne. They established St. Rose's Hospice in Lower Manhattan and then another in New York, followed by others in Philadelphia, Atlanta, St. Paul, and Cleveland.
Although unknown to each other, Jeanne Garnier, Mary Aikenhead, and Rose Hawthorne shared a common purpose in their concern for the care of the dying, and in particular the dying poor. Directly and indirectly they founded institutions which, in time, led to the development of other homes and hospices elsewhere. They also established base camp for what was to follow, for their achievements created some of the preconditions for modern hospice and palliative care development. The historian Clare Humphreys has shown how these early hospices and homes for the dying reveal three sets of concerns: religious, philanthropic, and moral. Such institutions placed a strong emphasis on the cure of the soul, even when the life of the body was diminishing. They drew on charitable endeavors, and were often concerned to give succor to the poor and disadvantaged. They were not, however, places in which the medical or nursing care of the dying was of any real sophistication. Rooted in religious and philanthropic concerns, which would diminish as the twentieth century advanced, the early homes for the dying represent the prologue to a period of subsequent development, which got underway in the decades after World War II.
The Twentieth Century
By the mid–twentieth century some important changes occurred in Western medicine and health care. Specialization was advancing rapidly, new treatments were proliferating, and there was an increasing emphasis upon cure and rehabilitation. At the same time death in the hospital, rather than at home, was becoming the norm, and medicine critics viewed the dying patient or "hopeless case" as a failure of the medical practice. In a series of famous lectures published in 1935 the American physician Alfred Worcester noted: ". . . many doctors nowadays, when the death of their patients becomes imminent, seem to believe that it is quite proper to leave the dying in the care of the nurses and the sorrowing relatives. This shifting of responsibility is un-pardonable. And one of its results is that as less professional interest is taken in such service less is known about it" (Worcester 1935, p. 33). This vacuum in knowledge was one factor that contributed to alternative suggestions about care at the end of life. That same year the Voluntary Euthanasia Legalisation Society was formed in the United Kingdom, followed in 1937 by the organization that came to be known as the Euthanasia Society of America. Both sought to promote the deliberate ending of life when requested by the patient.
Concerns about improving care at the end of life began to surface in the 1950s. In Britain attention focused on the medical "neglect" of the dying, whereas in the United States a reaction to the medicalization of death began to take root. Four particular innovations can be identified:
- A shift took place within the professional literature of care of the dying, from idiosyncratic anecdote to systematic observation. New studies by doctors, social workers, and social scientists provided evidence about the social and clinical aspects of dying in contemporary society. By the early 1960s leading articles in The Lancet and British Medical Journal were drawing on the evidence of research to suggest ways in which terminal care could be promoted and arguments for euthanasia might be countered.
- A new view of dying began to emerge that sought to foster concepts of dignity and meaning. Enormous scope was opened up for refining ideas about the dying process and exploring the extent to which patients should and did know about their terminal condition.
- An active rather than a passive approach to the care of the dying was promoted with increasing vigor. Within this, the fatalistic resignation of the doctor was supplanted by a determination to find new and imaginative ways to continue caring up to the end of life, and indeed beyond it, in the care of the bereaved.
- A growing recognition of the interdependency of mental and physical distress created the potential for a more embodied notion of suffering, thus constituting a profound challenge to the body-mind dualism upon which so much medical practice of the period was predicated.
It was the work of Cicely Saunders, first developed in St. Joseph's Hospice in Hackney, East London, that was to prove most consequential, for it was she that began to forge a peculiarly modern philosophy of terminal care. Through systematic attention to patient narratives, listening carefully to stories of illness, disease, and suffering, she evolved the concept of "total pain." This view of pain moved beyond the physical to encompass the social, emotional, and spiritual aspects of suffering—captured so comprehensively by the patient who told her, "All of me is wrong" (Saunders 1964, p. viii). But it was also linked to a hard-headed approach to pain management. Saunders's message was simple: "Constant pain needs constant control" (Saunders 1960, p. 17). She believed analgesics should be employed in a method of regular giving that would ensure that pain was prevented in advance, rather than alleviated once it had become established; in addition, they should be used progressively, from mild to moderate to strong.
When Cicely Saunders founded St. Christopher's Hospice in South London in 1967, it quickly became a source of inspiration to others. As the first "modern" hospice, it sought to combine three key principles: excellent clinical care, education, and research. It differed significantly from the other homes for the dying that had preceded it and sought to establish itself as a center of excellence in a new field of care. Its success was phenomenal and it soon became the stimulus for an expansive phase of hospice development, not only in Britain but around the world.
From the outset, ideas developed at St. Christopher's were applied differently in other settings. Within a decade it was accepted that the principles of hospice care could be practiced in many settings—in specialist inpatient units, but also in home care and day-care services. Likewise, hospital units and support teams were established that brought the new thinking about dying into the very heartlands of acute medicine. Modern hospice developments took place first in affluent countries, but in time they also took hold in poorer countries, often supported by mentoring and "twinning" arrangements with more established hospices in the West. By the mid-1980s, a process of maturation was evident.
In the United Kingdom, approximately 100 hospices had been formed, complemented by home support services and the first hospital palliative care teams; funding from the National Health Service and from the major cancer care charities started to become available. In the United States, growth was even more striking: 516 hospices existed just ten years after the foundation of the first initiative in New Haven, which had opened in 1974. Even more significant, a federal benefit was created in 1982 under Medicare for patients with terminal disease and a prognosis of six months. The legislation proved a stimulus to both not-for-profit and for-profit hospices. By the end of the twentieth century some 3,000 hospice organizations were operating in the United States.
Elsewhere, the potential for development varied enormously. Political instability, economic privation, and the absence of leadership limited possibilities for the development of hospices. In Eastern Europe, for example, there was little opportunity for hospice initiatives until communism began to break down. Thus in the Polish city of Kracow an informal society was first formed to support hospice developments in 1981, the year martial law was imposed. In Russia the first hospice was opened in St. Petersburg in 1992, with the support of the émigré journalist Viktor Zorza, who established Russian links with supporters in the United Kingdom in the wake of the new era of glasnost. The Island Hospice, which began in Zimbabwe in 1979, is generally acknowledged by medical professionals as the first hospice established in a third world country.
In several countries, for example India, the first hospices were modeled quite explicitly upon St. Christopher's, but local variation was also common. In Spain the word hospice has negative cultural associations of poverty and incarceration, so a strong emphasis was placed from the outset on the integration of services within the mainstream health care system. Pioneers of first-wave hospice development and some of their second generation successors have worked to promote their work in many countries of the world, building increasingly on international networks of support and collaboration, fostered by groups such as the World Health Organization, the International Association for Hospice and Palliative Care, and the European Association of Palliative Care.
By the early twenty-first century some form of specialist palliative care existed in an estimated ninety countries and there was clear evidence of continuing expansion in Asia, Eastern Europe, Africa, and Latin America. Within the professional lifetime of the founders of the modern hospice movement a remarkable proliferation had occurred; at the same time the definition of hospice and palliative care had come into sharper focus. The debates and discussions that followed saw palliative care preoccupied with many of the wider questions relating to the work of health care systems in the modern world.
In the 1970s and 1980s modern hospice and palliative care in the West had many of the qualities of a social movement supported by wider forces: consumerism and increasing discernment among the users of health and social care services; demographic trends that created substantial numbers of individuals able to volunteer their labor in local hospices; and greater affluence, which led to an increase in charitable giving. This movement may have contributed to a new openness about death and bereavement that was in evidence in the late twentieth century (in Britain, for example, the first person ever to be seen to die on television, was in the care of a hospice). Inspired by charismatic leadership, it was a movement that condemned the neglect of the dying in society; called for high quality pain and symptom management for all who needed it; sought to reconstruct death as a natural phenomenon, rather than a clinical failure; and marshaled practical and moral argument to oppose those in favor of euthanasia. For Cicely Saunders and her followers such work served as a measure of the worth of a culture: "A society which shuns the dying must have an incomplete philosophy" (Saunders 1961, p. 3).
In the late twentieth century in several countries, including Britain, Australia, Canada, the United States, there was professional recognition of this emerging area of expertise. Specialty recognition occurred first in Britain, in 1987, and was seen by some scholars as a turning point in hospice history. It was part of a wider shift away from "terminal" and "hospice" care toward the concept of palliative care. Those seeking to further develop this work claim that specialization, the integration of palliative care into the mainstream health system, and the development of an "evidence-based" model of practice and organization are crucial to long-term viability. Others in the field mourn the loss of early ideals and regret what they perceive to be an emphasis upon physical symptoms at the expense of psychosocial and spiritual concerns. In short, there have been claims that forces of medicalization and routinization are at work or even that the putative "holism" of palliative care philosophy masks a new, more subtle form of surveillance of the dying and bereaved in modern society.
By the end of the twentieth century, however, agrowing commitment to the evidence base was emerging. Two forces for expansion were also clearly visible. First, there was the impetus to move palliative care further upstream in the disease progression, thereby seeking integration with curative and rehabilitation therapies and shifting the focus beyond terminal care and the final stages of life. Second, there was a growing interest in extending the benefits of palliative care to those with diseases other than cancer, in order to make "palliative care for all" a reality. The new specialty was therefore delicately poised. For some such integration with the wider system was a sine qua non for success; for others it marked the entry into a risky phase of new development in which early ideals might be compromised.
Hospice care and palliative care have shared a brief history. The evolution of one into the other marks a transition which, if successful, could ensure that the benefits of a model of care previously available to just a few people at the end of life will be extended to all who need it, regardless of diagnosis, stage of disease, social situation or means.
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