The Hospice Miracle

"Just think", a social worker this blog corresponds with began..."of the miracle that created Hospice and how few people even know what we do or that we exist."

An informal poll of 25 random citizens we conducted after that phone call revealed that 94% had heard of "hospice care" but only 14% knew exactly what care Hospice provided. (Most thought it was some kind of care for the elderly. Almost no one knew that Hospice provided "palliative" care for the dying.)

An Idea Miracle

Our social worker correspondent spent the first 20 years of her career working with the elderly and the last 20 years helping the terminally ill connect with Hospice and gain admission to a Hospice facility at the end of their journey.

"Hospice is truly a miracle," she continued, " a conceptual miracle and a social miracle. The very idea that caring for the dying after medicine had done everything it knew how to keep patients alive was a radical departure from the commonsense notion that once the terminally ill had passed the point of no return further care would accomplish nothing...

"It was Dame Cicely Saunders in a 1963 lecture at Yale University who suggested that pain management and emotional support would help the terminally ill pass with dignity. In 1967, Dame Saunders created St. Christopher's Hospice in the United Kingdom and the Hospice movement was off and running."

A Social Miracle

The social miracle that powered the Hospice movement conceived by Dame Cicely Saunders occurred when the academic world, the medical profession, the congress of the United States, nonprofits with varying missions, and individual volunteers from all walks of life all came together to support the work of Hospice.

• In 1974, Florence Wald the dean of the nursing school at Yale who had first invited Dame Cicely Saunders to speak at Yale, founded the Connecticut Hospice in Branford, Connecticut, America's first.
• In 1978, only 11 years after the founding of the world's first hospice in the UK, the National Hospice Organization (NHO) was established to promote the concept of hospice care across the U.S. Also in 1978, a U.S. Department of Health, Education, and Welfare task force reported that “the hospice movement …… is a viable concept and one which holds out a means of providing more humane care for Americans dying of terminal illness while possibly reducing costs.  As such, it is the proper subject of federal support.”
• By 1979, The Health Care Financing Administration (HCFA) initiated demonstration programs at 26 hospices in 16 states to assess the cost effectiveness of hospice care and to help determine what a hospice is and what it should provide. Also in 1979, Cicely Saunders was made a Dame of the British Empire. This rapid recognition of the value of her Hospice concept by two separate nations' governments is truly a social miracle.
• In 1980 the W.K. Kellogg Foundation awarded a grant to the Joint Commission on Accreditation of Hospitals (JCAHO) to investigate the status of hospice and to develop standards for accreditation. How unusual that nonprofits had joined the government (rather than the other way around) in recognition of the Hospice Movement.
• In 1982 Congress includes a provision to create a Medicare hospice benefit.
• More nonprofit support joined the movement in 2002 when an initiative of the Robert Wood Johnson Foundation’s Last Acts campaign, began a three-year campaign to improve care and caring near the end of life.
• By 2004, more than 1 million Americans with a life-limiting illness were being served by the nation’s hospices, the first time the million-person mark had been crossed. Also in 2004, The Diana, Princess of Wales Memorial Fund and the Franklin Mint made a $3.35 million gift to NHPCO to promote better end-of-life care.
• In 2005, The Robert Wood Johnson Foundation continued its support of NHPCO’s Caring Connections consumer engagement initiative with an additional $4.9 million grant. The number of hospice provider organizations throughout the country topped 4,000 for the first time.
• By 2009, the number of hospice volunteers continues to grow with a record 550,000 serving as volunteers.

 The Miracle Continues

Hospice organizations provide end-of-life care, pain management, and emotional and spiritual support. Hospice care is palliative, meaning patients receive medical supplies and drugs but not curative or lifesaving treatments. As of October 2024, there were 8,514 hospice organizations in the United States. The number of hospice organizations varies by state, with some states having more than others due to population size or healthcare infrastructure. Medicare is now the primary payer for hospice care, covering 100% of care for eligible patients. Truly a miracle.