Origins And Development Of The Hospice Approach
Modern hospice programs have ancient roots (Phipps 1988; Stoddard 1978). Greek temples of healing offered a soothing environment, encouragement, and a spectrum of services that included bathing, massage, music, and therapeutic serpents. The belief that the whole person should be supported by a team of skilled and compassionate people would later become a core principle of the hospice movement. This promising beginning was overwhelmed by "progress" as the Roman Empire gained ascendance. The rulers established hospitals whose bureaucratic organization anticipated the modern health care system. The emphasis was on repairing wounded soldiers so they could fight again—the mutilated and the dying were far down the priority list.
Compassionate care for the sick and the dying continued to be provided in several monasteries. An exceptional woman of fourth century Rome observed their practices. Sorrowing over the death of her husband, Fabiola devoted herself to providing comfort to other people in their last days. Fabiola's personal example and her powers of persuasion persuaded others to take up this cause as well. The hospice movement would go through periods of both advance and decline through the centuries, but Fabiola's example had set the process in motion: the living could and should comfort the dying.
By the fifth century hospice was a part of medieval society. The word itself derives from the Latin hospitium, which also has given us host and hostess. In those years the hospice was a dwelling that functioned under the auspices of a religious order. Pilgrims were afforded the opportunity to rest, replenish their energies, and receive encouragement before they resumed their long, wearying, and dangerous journeys to sacred destinations. Some travelers were literally at death's doorstep. They were welcomed across the threshold, given bedding, food, and compassionate companionship by keepers of the faith. In the great age of pilgrimage, life itself became viewed as a journey (Cole 1992) with hospice serving as a final way station. In and around the Holy Land, crusader knights also operated hospice facilities and were known on occasion to provide care for people of other faiths as well.
Many hospice programs fell victim to social upheavals throughout the ensuing centuries. It proved difficult and often impossible to maintain a charitable service in the midst of warfare, religious conflicts, and economic and ecological disasters. The subsequent rise of technology and mass society was also inhospitable to hospice. Nevertheless, throughout these dark years there were still some small houses in which a few caregivers provided comfort for the sick and dying. Work houses and other large institutions provided shelter for the homeless and destitute, but closed their doors to "incurables" (Gilmore 1989).
Modern hospice care made its appearance in 1879 with the establishment of Our Lady's Hospice in Dublin, operated by the Irish Sisters of Charity. The mission was specifically to care of dying people and support for their families. Relief of pain was a high priority, and the staff quickly became experts in this art. Medical practice had become more ambitious as part of nineteenth burgeoning industrial, commercial, and scientific development. "Incurables" were increasingly regarded as people who stubbornly failed to respond to medical interventions and were therefore of little interest. Our Lady's Hospice would bequeath to the international hospice movement its emphasis on symptom relief and welcoming attitude toward family involvement. Just as significantly, the dying person was not regarded as a throwaway or a failed machine but as a unique and valuable individual. Several other institutions followed the lead of Our Lady's Hospice, but compassionate and effective care for the dying remained an endeavor well beyond the fringe of mainstream medicine.
The situation started to change dramatically in 1963 with the establishment of St. Christopher's Hospice. Dame Cicely Saunders, a nurse and a physician, had been inspired by the courage and insight of David Tasma, a man she had cared for in his last year of life (Saunders 1997). Under Saunder's innovative and charismatic leadership, St. Christopher's became the model for hospice care throughout the world. Saunders and her colleagues faced the challenge not only of developing improved methods of symptom control, but also of persuading the medical establishment that people could and should be given effective assistance in the end-phase of life.
The news traveled fast throughout the United Kingdom and to the United States and Canada where many people had become distressed by the perceived impersonality of medical care in general and the abandonment of the terminally ill person in particular. "Death with dignity" had become the rallying cry. The first North American hospice program was established in New Haven, Connecticut in 1974. Hospice made rapid strides, although not without resistance, conflicts, and misunderstandings that often arise when tradition is challenged. Studies soon confirmed that the hospice alternative did produce benefits such as pain relief and the ability to spend more time at home rather than in hospital (Mor, Greer, and Kastenbaum 1984). Convinced that this approach also reduced the costs of end-of-life services, the federal government enacted legislation enabling terminally ill people to select either hospice or traditional medical care. This program has been a qualified success. Provisions of the federal program are often criticized (e.g., Beresford and Connor 1999; Hoefler 1997), but more than 3,000 hospices serve nearly half a million patients a year.
The term hospice was problematic in bilingual Canada. Physician Balfour Mount (1997) introduced the term palliative care in the mid-1970s. This term not only eased the acceptance of hospice services in Canada, but has also gained widespread usage throughout the world. Palliative care in Canada is offered primarily as an in-hospital service. In the United States many programs emphasize home care with access, however, to inhospital units when necessary. To think of hospice as a place is often an oversimplification. Hospice is an approach to terminal care that can be carried out in a variety of settings.
Hospice programs are now flourishing in many nations (Saunders and Kastenbaum 1997). Each society has had to find its own way to integrate hospice care into its family and religious values as well as its political, economic, and environmental circumstances. Nations as diverse as China, Colombia, Japan, Jordan, and Saudi Arabia have learned how to introduce palliative care into cultures that differ in many ways from the United Kingdom and North America. This is often a difficult process as in Colombia, for example, where the government and medical establishment strongly resisted prescribing morphine for dying people even though the sale of illegal drugs is rampant there. One major obstacle in some nations has been the deeply rooted attitude that death should not be discussed, even if this means systematically trying to deceive the dying person that all is well. Even in these circumstances, however, people have come to recognize the value of open communication and the possibility of significant pain relief (e.g., Smith and Zhu 1997).