The word “hospice” derives from the Latin word hospes, which means both “guest” and “host.” Since the 11th century, the concept of hospice was adopted by the Roman Catholic tradition to refer to a place of hospitality for the sick and dying as well as for travelers and pilgrims. The first of such hospices are believed to have been established during the Crusades. Hospices were widespread in the Middle Ages but diminished as religious orders became dispersed.
The modern usage of hospice as a place for and philosophy of end-of-life care began with the work of a British physician named Dame Cicely Saunders. Dr. Saunders began work with terminally ill patients in the London area in 1948 as a nurse and earned her medical degree in 1957. In 1963, during a talk at Yale University in the US, Dr. Saunders introduced the idea of specialized care for the dying, which centered on palliative care rather than treatments to cure. In the audience were doctors, nurses, chaplains, and medical students. During this talk, Dr. Saunders showed pictures of patients who were terminally ill with cancer prior to and after receiving specialized hospice care. The difference in the patients’ appearance and overall wellbeing was remarkable, and this began the discussion in the US of providing hospice care to patients at the end of life.
In 1967, Dr. Saunders founded St. Christopher’s Hospice in London, the first hospice for terminally ill patients in the United Kingdom. Dr. Patricia Wald, Dean of the Yale School of Nursing, took a sabbatical in 1968 to work at St. Christopher’s to experience hospice first hand.
In 1969, Dr. Elisabeth Kubler-Ross published her groundbreaking book, On Death and Dying, which contains more than 500 interviews with dying patients. In this book, Dr. Kubler-Ross emphasizes the benefits of home care over treatment in an institutional setting for terminally ill patients, and argues that everyone deserves the right to decide about their end-of-life care. In 1972, Kubler-Ross testified before the US Senate Special Committee on Aging about the right to die with dignity, a big part of which is the right to make decisions about one’s end-of-life care and to die at home.
In 1974, Patricia Wald, two pediatricians, and a chaplain founded the first hospice in the US—Connecticut Hospice in Branford, CT. That same year, Senators Frank Church and Frank E. Moss introduced legislation to provide federal funds for hospice programs. The legislation didn’t pass. It wasn’t until 1982 that Congress included a provision to create a Medicare hospice benefit as part of the Tax Equity and Fiscal Responsibility Act of 1982, but it contained a sundown provision for 1986.
In 1986, the Medicare Hospice Benefit was enacted, and states were given the option to include hospice in their Medicaid programs. Hospice care was made available to terminally ill nursing home residents as well.
For the next three decades, legislation was passed, funding was improved, and Medicare reimbursement rates were increased, resulting in the proliferation of hospice care providers. In In 2004, the number of Americans who received hospice services topped one million for the first time and, in 2005, the number of hospice providers in the US exceeded 4000.
In 2014, 40 years after the opening of Connecticut Hospice, the National Hospice and Palliative Care Organization (NHPCO) and its affiliates celebrated four decades of providing hospice care in the US.