History of Hospice and Palliative Care
The words “palliative” and “hospice” both have their roots in the Latin language. The word Palliative, derived from the Latin “palliare,” which means to cloak, while the word hospice comes from “hospitium,” meaning hospitality or hospitable. Palliative care started with an emphasis on caring for the dying. The first hospices were constructed by European Christians, in the Fourth Century, who were caring for the sick and destitute.
These were “place[s] of shelter and rest for weary or ill travelers on a long journey.” The first modern centers to provide such services did not come about until the 20th Century, however.
Dr. Cicely Saunders, who began her work with the terminally sick in 1948, was a British physician who started the modern hospice movement. Her interest in working with the terminally ill heightened after her relationship with a cancer patient made her realize the need for better care for such patients. It was not until 1967 that she would create the first modern hospice. Located in a residential suburb of London, it was a modest, sixty-bed facility Dr. Saunders named St. Christopher’s Hospice. The hospice house came about following a lecture by Dr. Saunders in 1963 in which she educated the gathered crowd of medical students, nurses, and chaplains on the idea of holistic hospice care.
Dr. Cicely Saunders consoling a patient
The practice was brought to the United States by another critical contributor to these fields, Dr. Elisabeth Kubler-Ross. A Swiss author and psychiatrist, Dr. Kubler-Ross had been "disturbed" by the poor treatment of dying patients in the United States after moving to the United States in 1962. After becoming an instructor at the University of Chicago, she started a project about death with students that "evolved into a series of well-attended seminars" featuring dying patients.
In 1969, she released a book entitled On Death and Dying, which consisted of more than 500 interviews with such patients. The book details the five different stages that terminally ill patients go through. It also presents the argument for increased home care as opposed to “treatment in an institutional setting.”
In 1972, Dr. Kubler-Ross testified at the first national hearings on the idea of death with dignity. In her speech to the U.S. Senate Special Committee on Aging, she discussed how western society denies and isolates itself from death and urged the committee on the need for change in this regard. The first hospice legislation was introduced by Senators Frank Church and Frank E. Moss, two years later.
Dr. Elisabeth Kubler-Ross
On Death and Dying - Book by Dr. Elisabeth Kubler-Ross
While this legislation was not enacted, Congress would finally include a “Medicare hospice benefit” provision in the Tax Equity and Fiscal Responsibility Act of 1982. This provision was then made permanent in 1986. Laws regarding physician-assisted suicide were passed in the same year. These included the following: Barring physician-assisted death from being funded by taxpayers, mentally competent terminally ill people the right to physician-assisted suicide.
The American Board of Medical Specialties (ABMS) and the Accreditation Council for Graduate Medical Education recognized the subspecialty of hospice and palliative medicine in 2006. Palliative care is still a fledgling field of medicine. Large organizations such as Harvard Medical School and UF Health founded their palliative care programs as recently as 1999 and 2014, respectively.
The relative recency of this field has led to multiple barriers to this care for patients: the number of practitioners, legislation, and funding.
Regarding the number of palliative professionals as compared to the millions of those who need it, the disparity is gargantuan in places like Sub-Saharan Africa. This region was home to nearly two million children living with HIV/AIDS in 2007. This short “supply of palliative care and hospice specialists” was also discussed by the Institute of Medicine in a 2014 publication titled Dying in America.
In that same year, California Governor Jerry Brown signed into law a requirement that in-state Medicaid managed plans must “begin offering full palliative care benefits.” This law has yet to take effect as this requirement activates in 2020. Also, in 2014, the World Health Organization passed the first global resolution on palliative care, further demonstrating how uncharted the waters of this care are in the United States and abroad.