Adapted from the Hospice Education Instiute and the Hospice Foundation of America
Definition of Hospice
Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments. Hospice care neither prolongs life nor hastens death. Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management. The goal of hospice care is to improve the quality of a patient’s last days by offering comfort and dignity. Hospice care is provided by a team-oriented group of specially trained professionals, volunteers and family members. Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient’s pain and discomfort. Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient’s family and friends. Hospice offers a variety of bereavement and counseling services to families before and after a patient’s death.
The word “hospice” stems from the Latin word “hospitium” meaning guesthouse. It was originally used to describe a place of shelter for weary and sick travelers returning from religious pilgrimages. During the 1960’s, Dr. Cicely Saunders, a British physician began the modern hospice movement by establishing St. Christopher’s Hospice near London. St. Christopher’s organized a team approach to professional caregiving, and was the first program to use modern pain management techniques to compassionately care for the dying. The first hospice in the United States was established in New Haven, Connecticut in 1974.
Today there are more than 3,100 hospice programs in the United States including Puerto Rico and Guam. Hospice programs cared for nearly 540,000 people in the United States in 1998.
Hospice is not a place. Eighty percent of hospice care is provided in the home and in nursing homes. Inpatient units are sometimes available to assist with caregiving.
Active, Total Care of Patients:
In 1990 an Expert Committee of the World Health Organization drew up a formal definition of palliative care, stating its goal and indicating its function:
“Palliative care is the active, total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best possible quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of illness, in conjunction with anti-cancer treatment.
- affirms life and regards dying as a normal process;
- neither hastens nor postpones death;
- provides relief from pain and other distressing symptoms;
- integrates the psychological and spiritual aspects of patient care;
- Offers a support system to help patients live as actively as possible until death;
- Offers a support system to help the family cope during the patient’s illness … and in their own bereavement.”
History of Hospice
Throughout history societies have evolved special ways of caring for the dying and the bereaved. For example: in old China the “death houses” offered a place for the destitute dying to stay, and in New Zealand, Maori customs give practical support for the family at the time of death, and encourage the community to participate in the mourning rituals, and in other cultures there have been well-developed approaches to provide both practical and spiritual support to the dying and bereaved.
In Western Europe and North America until the 19th Century, caring for the dying and the bereaved was seen primarily as the job of the family and the church. In this century, dying has been seen as a medical event, not as a milestone in the life and history of a family.
In the United States today, almost 3,000 local hospice and palliative care programs offer specialized care to people suffering from fatal illnesses, such as cancer. Good hospices are rooted in, and responsive to, the communities they serve, and to the people who live and die there.
History: Middle Ages to the 21st Century
Religious orders establish “hospices” at key crossroads on the way to religious shrines like Santiago de Compostela, Chartres and Rome. These shelters helped pilgrims, many of whom were traveling to these shrines seeking miraculous cure of chronic and fatal illnesses, and many of whom died while on their pilgrimages.
Religious orders offer care to the sick (including the dying) in locally or regionally based institutions. Most people die at home, cared for by the women in the family.
Madame Garnier of Lyon, France opens a “calvaire” to care for the dying. In 1879 Mother Mary Aikenhead of the Irish Sisters of Charity opens Our Lady’s Hospice in Dublin, caring only for dying. By the late 19th Century, the increase in municipal or charitably-financed infirmaries, almshouses and hospitals, and the expansion of medical knowledge, begins the process of “medicalizing” dying. (By the mid-20th Century, almost 80% of people in the U.S.A. die in a hospital or nursing home.)
The Irish Sisters of Charity open St. Joseph’s Hospice in East London, to care for the sick and the dying.
In London, St. Luke’s Hospice and the Hospice of God open to serve the destitute dying.
Interest grows in the psychosocial aspects of dying and bereavement, sparked by the work of Worcester, Bowlby, Lindemann, Hinton, Parkes, Kubler-Ross, Raphael, Worden and others.
Cicely Saunders, a young physician previously trained as a nurse and a social worker, works at St. Joseph’s Hospice, studying pain control in advanced cancer. Here Dr. Saunders pioneered in the regular use of opioid analgesics given “by the clock” instead of waiting for the pain to return before giving drugs. This is now standard practice in good hospice and palliative care.
Dr. Saunders opens St. Christopher’s Hospice in London, emphasizing the multi-disciplinary approach to caring for the dying, the regular use of opioids to control physical pain, and careful attention to social, spiritual and psychological suffering in patients and families.
Many hospice and palliative care programs open in Great Britain in the years following, adapting the St. Christopher’s model to local needs, offering in-patient and home care.
New Haven Hospice (now Connecticut Hospice) begins hospice home care in the United States, caring for people with cancer, ALS and other fatal illnesses.
Hospices and palliative care units open across North America. These include Hospice of Marin in California, the Palliative Care Unit at the Royal Victoria Hospital in Montreal, the Support Team at St. Luke’s Hospital in New York City, and Church Hospital Hospice in Baltimore.
Hospice care, usually emphasizing home care, expands throughout the United States. Medicare adds a hospice benefit in 1984. Hospices begin to care for people with advanced AIDS.
Almost 3,000 hospices and palliative care programs serve the United States. There is well-established hospice and palliative care in Canada, Australia, New Zealand, and much of Asia and Western Europe. Hospice and palliative care is now available in over 40 countries worldwide, including many less-developed nations.
World Health Organization sets standards for palliative care and pain control, calling it a “priority.” But studies show that most patients still receive little or no effective palliative care, and pain is often very poorly controlled, primarily due to lack of medical knowledge, to unfounded fears of addiction, and (in less-developed nations) to
shortage of opioids.
The principles of good hospice and palliative care are understood and accepted, and all patients with advanced illness, and their families, are assured of competent and compassionate care in their homes, in nursing homes and in hospitals.