Origins of Hospice/Palliative Care
Romans used the Latin root word hospes to describe both hosts and guests, a usage that emphasized the subtle relationships connecting both parties. The Latin root word for hospice, hospitium, referred to a place where guests were received with hospitality and lodging, concepts associated with several modern words, including hospice, hostel, hotel and hospital.
Dr. Balfour Mount coined the term, palliative care, from the Latin root word, pallium, which referred to an outer garment that covered or cloaked a person or object. The Latin derivation suggests that palliative care can effectively cloak the symptoms of terminal illness. The ancient Indo-European word, pelte, has been suggested as an additional etymological root for palliative care, because it implies an increasingly active role for physicians who practice palliative medicine. Pelte referred to a hide or skin stretched over a frame and used to shield or protect something. Pelte suggests that skilled palliative medicine physicians offer interventions that help to protect and shield patients from the devastating effects of terminal illness, while assisting them in their search for hope, purpose and meaning.
Early Hospice Movement
The roots of the hospice movement began long ago. As early as 2500 BCE, healers in India and Egypt developed institutions for medical education and health care. In the 6 th century BCE, Buddhists established a network of medical centers across India. The Greeks and Romans often diagnosed and cared for the sick and dying in religious temples. In 475 CE, Fabiola, a Roman matron, opened a refuge for travelers, the sick and the dying. During the Middle Ages, Christian religious orders established networks of hospices across Europe, in particular along the routes of the Crusades. The hospices provided refuges for weary travelers, for pilgrims in search of spiritual renewal, and for people who were dying. Hospices offered hospitality, including care the body and respect for the soul as people journeyed either from one place to another or from this life to the next. When a series of plagues in the 14 th century decimated the population of Europe, killing more than 25 million people, widespread societal disruption left the sick and the dying with no one else to help them.
Modern Hospice Movement
Development of Hospices in Europe
In the 1600s, Vincent de Paul, a French priest and former slave, founded a nursing order called the Sisters of Charity, which devoted itself to caring for the sick and dying. In 1879, Sister Mary Aikenhead, of the Irish Sisters of Charity, founded Our Lady’s Hospice in Dublin. In 1891, the Anglican Sisters of the Society of St. Margaret opened the Hostel of God, which continues to care for critically ill patients in London to this day. In 1905, the Irish Sisters of Charity founded St. Joseph’s Hospice in the East End of London, where the modern hospice movement began with the work of Dr. Cicely Saunders.
Dr. Cicely Saunders
Dr. Saunders is usually credited with developing the art and science of modern hospice care. She established physician-training programs to improve competence in palliative medicine and formulated the basic principles of hospice care, which include vigilant attention to the details of patient care and careful research to support claims about an intervention’s effectiveness.
Dr. Saunders began her career as a nurse and social worker. Her overriding concern was alleviating the suffering of dying patients. After completing her medical training, Dr. Saunders became the first full-time medical director at St. Joseph’s, where she pioneered the use of oral opioids to control pain and developed the concept of total pain to describe the all-encompassing physical, emotional, spiritual, and social distress experienced by many dying patients. While caring for David Tasma, a dying Polish Jew from the Warsaw ghetto, Dr. Saunders described her vision of care for the terminally ill patients. Tasma replies, “I want what is in your mind and heart” and donated 500 so that he could be a “window” in her new hospice home. In 1967, Dr. Saunders opened the world-renowned St. Christopher’s Hospice in Sydenham ( South London), which continues to focus on alleviating physical, emotional, spiritual, and social contributors to total pain.
Development of Hospices in the United States
Dr. Elizabeth Kubler-Ross
During the same period that Dr. Saunders was developing the principle of hospice care, Elizabeth Kubler-Ross, MD (a Swiss-born psychiatrist who emigrated to the United States), was interviewing terminally ill patients about their reactions to dying. In 1969, she published On Death and Dying, which rapidly became a bestseller and sparked widespread interest in the care of dying patients. In her book, Dr. Kubler-Ross described both the conspiracy of silence that surrounds terminally ill patients and five common stages or reaction to dying, denial, anger, bargaining, depression and acceptance. Although Kubler-Ross used the term stages of dying, she did not mean to imply that all patients experience the same five reactions in exactly the same order.
Organizational Models of Hospice Care in the United States
Hospice care has been one of the fastest growing social and medical movements in the United States. The first hospice program open in 1974. By 2000, approximately 3,100 programs were caring for 70,000 patients.
Several models of hospice care evolved in the United States to meet differing community needs; some are free-standing entities (37%) and some are affiliated with hospitals (35%), home health agencies (22%), and hospital systems (9%). The remaining (6%) are under other auspices. All Medicare-certifies hospice programs must provide the same services whether they are community based or operated by other entities.
Originally, most hospice programs were incorporated as nonprofit organizations, but ownership trends are changing. In 2000, 73% were nonprofit, 20% were for-profit, and 7% were operated by the government. Ninety-one percent of hospices are Medicare certifies and 55% are accredited.
Taken from: UNIPAC One: The Hospice/Palliative Medicine Approach to End-Of-Life Care
Porter Story, MD, FACP, FAAHPM
Carol F. Knight, EdM