18 Oct Where Did the Idea of Hospice Care Originate?
The word “hospice” is not new terminology.
Credit: pond5
In fact, the word first originated hundreds of years ago. “Hospice” is derived from the Latin word “hospes,” which means host or guest. In the Middle Ages, fatigued—and often ill—travelers journeying to the Holy Land could find rest and refuge inside monasteries. Over time, those places of rest came to be known as “hospices.” Because a great many of those travelers were very ill when they arrived, many of them spent their last days at these monasteries.
The word “hospice” was first formally used to describe the very specialized care of people facing terminal illnesses in 1967 by Dame Cecily Saunders. Saunders was a physician, nurse, social worker and writer who initially formed the concept of hospice care. Pain control and palliative care piqued her interest very early in life. Born in Barnet Hertfordshire, England, in 1918, Saunders was very young—only in her twenties—when she began working with patients who were terminally ill.
Dame Cecily Saunders as a nurse at St. Thomas’s Hospital
Credit: factfile.org
Saunders began working with dying patients as a social worker in 1945, and later, as a volunteer nurse, she provided care for terminally-ill patients. It was through these experiences that Dame Cecily Saunders became keenly aware of things that were needed, things that were lacking and things that could be implemented in the care of patients with life-limiting illnesses—specifically things related to pain control. She saw a great need for better pain control in patients who were terminally ill, and shortly thereafter, Saunders began to plan a specialized approach to meet that need.
She had only one problem: she had been told that because she was not a physician, her ideas about palliative care might not be accepted in medicine. It was so important to her that she could share her ideas with listening ears, that she began studying to become a doctor at St. Thomas Medical School in London in the early 1950s.
Saunders researched and developed a concept she referred to as “total pain.” This concept recognized that the pain experienced by someone who is dying is never limited to just physical pain. Saunders believed firmly that the pain associated with dying is a multi-faceted one, and that an approach to controlling pain should be multi-faceted as well. Saunders in no way invalidated or belittled a patient’s physical pain; rather, she expounded upon the definition of pain, and it is this concept on which much of the modern-day hospice movement is built.
In 1958, Saunders received a research grant that allowed her to work in the arena of pain control for dying patients at St. Joseph’s Hospice in London, and five years later, during a lecture she gave to medical students, nurses, social workers and chaplains at Yale University, Dame Cecily shared her vision of comprehensive care for the dying. That lecture would serve as a catalyst for the development of the holistic approach to care for dying patients in the United States.
Back in the United Kingdom that same year, Dame Cecily was planning to build a new hospice center—St. Christopher’s Hospice—which would be the first-ever research and teaching hospice that implemented pain control with the “total pain” perspective—combining clinical symptom management with care for the social, emotional, spiritual and psychological pain experienced by patients who were terminally ill. St. Christopher’s would also be the first to combine this type of care with teaching and clinical research. She began to raise money to build St. Christopher’s, and by 1965, she had raised enough to begin construction. St. Christopher’s Hospice opened in 1967.
The very first piece of legislation in the United States regarding hospice wasn’t introduced until 1974, but that legislation was not enacted. Four years later in 1978, a task force formed by the United States Department of Health, Education and Welfare reported that the concept of hospice care was a “viable” one and that it provided a way of giving “humane care” to dying patients while also serving as a means of reducing costs. The task force further reported that their findings persuaded them to believe that hospice care should receive federal funding.
The United States Congress proposed the idea of a hospice benefit for Medicare beneficiaries in the Tax Equity and Fiscal Responsibility Act of 1982, and by 1986, that benefit was rolled out to Medicare recipients.
Eleven years later in 1993, hospice care was included in President Clinton’s proposal for health care reform. As such, hospice care became a recognized part of the continuum of health care services for Americans. In 2000, the United States Senate held two very important hearings regarding the challenges Medicare beneficiaries were facing when attempting to access hospice care. The hearings specifically focused on testimony regarding the barriers some beneficiaries encountered when seeking this very specialized care.
By 2005, there were more than 4,000 organizations in the United States that provided hospice services to terminally ill patients—a victory surely Dame Cecily Saunders celebrated. In July of that year, Dame Cecily—pioneer of the modern-day hospice movement—died at the age of 86 from breast cancer.
Credit: wikidata
Today, her dedication to caring for terminally-ill patients and teaching others about the importance of hospice care and management of pain on all levels—from physical and psychological pain to social and spiritual pain—remains the standard by which dying patients are cared for. Without her vision, her dedication and her unrivaled understanding of the importance of meeting the variety of needs of terminally-ill patients, hospice care might not be as advanced and individualized as it is today.
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