Hospice Origins, Founders, Growth and Beliefs

How The Hospice Model of Palliative End-of-Life Care Emerged

Aug 6, 2009

A Connecticut nurse started the American hospice movement in 1974. She was Inspired by a British physician who pioneered the field of holistic care of the terminally ill.

Florence Wald, the "mother of American hospice," organized an interdisciplinary team of Yale University doctors, clergy, and nurses to study the needs of dying patients, which led to the first US hospice in 1974. Connecticut Hospice, as it was called, initially provided only in-home care. In 1980, an inpatient facility opened. By 2008, there were 4,700 hospices in the United States.

End-of-Life Care Before the Hospice Movement Began

According to the Center for Nursing Advocacy, after World War II, as society became increasingly mobile and more women worked outside the home, traditional home care of the dying gave way to a hospital-based model. The transition from family-centered to institutional end-of-life care relegated terminal patients to "the end of the (hospital) hall." Strangers with inconsistent approaches to their psychological, social or spiritual needs ministered to them, and often paid scant attention to pain management.

It was an era when medicine focused on cures and new life-saving technologies, and physicians reigned supreme. When hope for a cure was gone doctors often withheld the full terminal diagnosis and prognosis, believing it was better to shield patients and their families from the truth.

A death-denying culture long prevalent in the West "came out of the closet" in 1969 when psychiatrist Elisabeth Kubler-Ross published her landmark book, On Death and Dying [Scribner]. Kubler-Ross's theory helped define what death with dignity means for both a dying individual who moves through her now-famous five stages of grief, and the loved ones who mourn their passing.

Yale University nursing school dean Florence S. Wald is credited with introducing hospice to the United States and revolutionizing the care of the terminally ill. Wald studied under the movement's true pioneer, Dr. Cicely Saunders, medical director of the St. Christopher's Hospice in London. In the 1950s Saunders volunteered at St. Joseph's Hospice, a small religious home for the dying run by Irish Catholic nuns who emphasized preemptive pain control. Saunders later designed her hospice, which she opened in 1967, as a warm, peaceful setting that enabled patients to die with dignity, respect and compassion. Saunders felt it was important to administer morphine before pain gripped the patient, not after, and to stay ahead of a dying patient's suffering rather than chasing it.

Wald's emphasis was on pain relief, symptom management and creating a caring community around the patient and family who were included in all decisions. Her goal was to maintain dignity and the highest quality of life while saying good-bye.

The hospice movement rapidly expanded. In 1982, Congress required Medicare to pay for hospice care, which put the treatment in mainstream medical practice. According to the Center for Nursing Advocacy, in 2008 over 4,700 hospice programs served about 900,000 patients a year in the United States.

Philosophy of Hospice

The American hospice movement differs from its British parent in one key respect: it’s founder, Florence Wald, an agnostic, was an open advocate of euthanasia, while Saunders, a devout Christian, opposed the practice and believed hospice made it unnecessary. Wald told the Journal of the American Medical Association in 1999: “I know that I differ from Cicely Saunders, who is very much against assisted suicide. I disagree with her view on the basis that there are cases in which either the pain or the debilitation the patient is experiencing is more than can be borne, whether it be economically, physically, emotionally, or socially. For this reason, I feel a range of options should be available to the patient, and this should include assisted suicide.” *

According to Rita Marker, executive director of the International Task Force on Euthanasia and Assisted Suicide in Steubenville, Ohio, consumers need to be cautious before turning themselves or a loved one over to hospice care. "You need to know who is in charge, what the protocols are, what the philosophy of that hospice is, and where they stand on the issue of food and fluid,” she said, referring to the matter of providing medical nutrition and hydration. ** Some hospices do not allow dying patients undergoing terminal (palliative) sedation to have intravenous fluids or feeding tubes, while others may permit them.

The Business of Hospice

Hospice, once a grass-roots, home-based model of end-of-life care is now a part of corporate medicine. A 2009 article in the Pacific Sun states that in 2005, for-profit organizations accounted for half of all hospices, and they charted profits of about 12 percent from 2001 to 2005, according to the Medicare Payment Advisory Commission (MedPAC). About $10 billion was spent on hospice care in this country in 2007, up from $3 billion in 2000, according to the National Hospice and Palliative Care Organization (NHPCO), an industry support group. ***

* Friedrich, M.J. "Hospice Care in the United States: A Conversation With Florence S. Wald." JAMA,1999; 281: 1683-1685.

** Roberts, Judy. "Is hospice movement going beyond end-of-life care?" National Catholic Register online, 2/17/06.

*** Seidman, Peter. "Is Hospice by the Bay putting financial support ahead of life support?" Pacific Sun online, June 24, 2009.

The copyright of the article Hospice Origins, Founders, Growth and Beliefs in Hospices is owned by George Daleiden. Permission to republish Hospice Origins, Founders, Growth and Beliefs in print or online must be granted by the author in writing.