History of Hospice

Hospice month celebrates success of nation’s first coordinated care model

Published in The Hill by Edo Banach, Opinion Contributor

While there’s no shortage of partisan disagreements on Capitol Hill, one hopes the combative environment that’s become the norm in Washington might take a brief pause now that midterm elections are behind us. At a time when unity and common ground are sorely needed in our politics and our policymaking, one health care program stands out as a reminder of how bipartisanship works at its best: the Medicare Hospice Benefit.

This extraordinary policy achievement was made possible by lawmakers who put aside their differences in the interest of the Americans they served. Enacted as a demonstration in 1978 and a Medicare benefit in 1982, hospice programs have served millions of Americans and their families with compassionate care to relieve pain, manage symptoms, supported beneficiaries and their family caregivers, and provided bereavement services for individuals following the death of a loved one. The benefit has been invaluable to patients and lifesaving for families. And it never would have happened without lawmakers who were committed to the concept, and to working together.

Democrats, including Sens. John Glenn (Ohio) and Bill Bradley (N.J.), joined with Republican senators like Bob Dole (Kan.) and Chuck Grassley(Iowa) to pass what then-Rep. Leon Panetta (D-Calif.) called a “political miracle.” Sen. John Heinz (R-Pa.) personally collected commitments from 68 senators to pass the Heinz-Dole-Packwood amendment to provide hospice services to terminally ill Medicare patients.

Not only did this bipartisan act show how a diverse group of legislators could come together for the good of the country but the hospice benefit itself has become an example of how our fragmented health care system can – and should – work together for the betterment of patients. As America’s original coordinated care model, hospice brings together a multidisciplinary team of providers to meet all aspects of a dying patient’s physical, spiritual and emotional needs. No other health care sector is required to address all aspects of a patient’s, and their family’s, health and wellbeing.

Those elected to serve in the upcoming Congress should know that hospice is a program that works and a Medicare benefit that matters to their constituents. As seasoned and novice legislators alike consider health policy reforms, they should look to the success of the hospice model as an example of preserving what works, and help expand access to comprehensive, coordinated care and person- and family- centered care to all patients with serious, advanced and life-limiting illness. We should also reinforce the foundation of hospice to ensure access, choice and quality care at the end of life.

Hospice is not only best for patients at the end of life, it is also good for the Medicare program. Study after study show hospice care improves quality of life, delivers on patient and family satisfaction and reduces unnecessary costs for Medicare beneficiaries at the end of life. Thirty-plus years later, hospice is a reminder that there are policy solutions that work for both sides of the aisle and across our nation for all Americans. The fruits of cooperation live on today in a Medicare benefit that serves 1.43 million Americans annually.

It’s sometimes unclear if the dust will ever settle in Washington, and if we’ll ever get back to a place of collegiality and bipartisanship in Congress. If our nation’s remarkable hospice benefit is any indication, great things can certainly happen if it does.

Edo Banach is President and CEO of the National Hospice and Palliative Care Organization (NHPCO).

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NHPCO Highlights Importance of Hospice in Healthcare Since 70s

November begins National Hospice & Palliative Care Month. National Hospice & Palliative Care Organization (NHPCO) writes that hat began as primarily a volunteer-driven, grassroots movement in the 1970’s, is now an integrated part of our nation’s health care delivery system that provides care to more than 1.43 million Medicare beneficiaries and their families every year.

“Enacted as a demonstration in 1978 and a Medicare benefit in 1982 as our nation’s first coordinated care model, hospice programs have served millions of Americans and their families with compassionate care to relieve pain, manage symptoms, support patients and their family caregivers, and provided bereavement services for individuals following the death of a loved one,” said Edo Banach, president and CEO of NHPCO. “The benefit has been invaluable to patients and lifesaving for families.”

NHPCO offers a snapshot of hospice care with representative statistics from the current edition of its report, Facts and Figures: Hospice Care in America (PDF):

NHPCO provides a valuable abundance of resources with data and statistics on hospice. The organization is integral to a broad spectrum of efforts in leading the public’s understanding of hospice and palliative care and advancing the ever more vital role of hospice across the healthcare industry.

In addition, this month honors the home care and hospice community including the millions of nurses, home care aides, therapists, and social workers who make a remarkable difference for the patients and families they serve.

These heroic caregivers play a central role in our health care system and in homes across the nation.
  • In 2018, home care providers will travel about 8 billion miles to deliver the best health care in the world’
  • Ninety percent of Americans want to age in place, and home care is the preferred method of health care delivery among the disabled, elderly, and chronically ill; and
  • Home care provides high-quality, compassionate care to more than 5 million Americans annually.

As we approach the giving season, November is the perfect time to recognize their efforts.

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The 50th Anniversary of the Hospice Movement

This year marks the 50th anniversary of the hospice movement. It’s been an incredible success story. The Hospice Movement, including advances in palliative care and the introduction of holistic support, has been generally credited by the rise of two influential 20th century figures: (Dame) Dr. Cicely Saunders and Dr. Elisabeth Kübler-Ross.

An Unmet Need Recognized

Dame Cicely Saunders

Dame Cicely Saunders

Englishwoman Cicely Saunders was a medical social worker in 1948 when she developed a relationship with a dying Polish refugee that helped solidify her ideas that terminally ill patients needed compassionate care to help address their fears and concerns, as well as palliative (pain and symptom management) comfort for their physical condition. Saunders began volunteering at a facility for the terminally ill poor, where a  physician convinced her that she could best influence the treatment of the terminally ill as a physician herself. Upon graduation from medical school in 1957, she accepted a permanent position in a hospice facility in East London, where she continued to research pain control.

Saunders introduced the idea of specialized care for the dying to the United States during a 1963 visit to Yale University. Her lecture, given to medical students, nurses, social workers and chaplains about the concept of holistic hospice care, included photos of terminally ill cancer patients and their families, showing the dramatic differences before and after the symptom control care.

St. Christopher's Hospice

St. Christopher’s Hospice

In 1967, Saunders established St. Christopher’s Hospice, the world’s first purpose-built hospice, in a London suburb. It was founded on the principles of combining teaching and clinical research and providing expert pain and symptom relief with holistic care to meet the physical, social, psychological and spiritual needs of its patients and those of their family and friends. Familiar comforts of home were made available to patients, from gardening to salon hairstyling. As Saunders’ protégé Dr. Richard Lamerton later explained, a patient’s home or a home-like setting was found to be essential as a part of therapy, versus a hospital – the last place to be when one needed peace and calm.

A Plea for Empowerment and Dignity

Elisabeth Kubler-Ross

Elisabeth Kubler-Ross

In Chicago, Swiss-born psychiatrist Elisabeth Kübler-Ross was formulating her own response to the treatment of terminally ill patients in late-1960s America. Married to an American physician, she observed what she considered inadequate social responses by his hospital toward its dying patients. She began a study that would lead to more than 500 interviews with terminally ill patients.

On Death and Dying was published in 1969 and became a bestseller. A revolutionarily insightful work, it identified five stages through which many terminally ill patients progress. These stages (denial, anger, bargaining, depression and acceptance) would become widely accepted in the decades that followed as ‘the five stages of grief’. Even into the 21st century, On Death and Dying would continue to be the gold standard for education on the subject. The book was more than a simple explanation of psychological expressions, however. Within it, Kübler-Ross made a plea for care in the patient’s home as opposed to treatment in an institutional setting. She further argued that patients should have a choice and the ability to participate in the decisions that affect their destiny, including patients’ rights to refuse treatment that they felt would not be beneficial or would not improve their quality of life.

Testimony Leads to Federal Support

In 1972, the United States Senate Special Committee on Aging conducted the first national hearings on the subject of death with dignity. Kübler-Ross was asked to testify. In her testimony, she capitalized on the opportunity to emphasize the benefits of patient care in the patient’s own home: “We live in a very particular death-denying society. We isolate both the dying and the old, and it serves a purpose. They are reminders of our own mortality. We should not institutionalize people. We can give families more help with home care and visiting nurses, giving families and patients the spiritual, emotional, and financial help in order to facilitate the final care at home.”

The impacts of Saunders and Kübler-Ross redefined hospice care across the globe: comprehensive care for the patient’s physical, social, psychological and spiritual needs; patient empowerment to make decisions about the type of care they wish to receive or not receive; emphasis on at-home care for best patient comfort when possible; and an expanded circle of care to include the patient’s family and friends.

In 1978, a report by a U.S. Department of Health, Education, and Welfare task force noted both the altruistic and practical advantages of government support for hospice care: “The hospice movement as a concept for the care of the terminally ill and their families 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.”

The Hospice Movement Comes to Houston

In 1980, Houston’s first hospice, Houston Hospice, was founded. The same year, New Age Hospice was formed, which later merged with  Houston Hospice. New Age Hospice’s primary organizer, Marion Wilson, was determined to establish a source of humane, caring responses for dying patients and their families, following the loss of three of her children.

In 1981 Houston Hospice (as New Age Hospice) began accepting patients. Its first Medical Director was Dr. Richard Lamerton, a revered

authority on care of the terminally ill who had been the first intern trained by Dame Cicely Saunders at St. Christopher’s Hospice in London.

A 1985 visit by Princess Diana to St. Joseph’s Hospice. One of its founders, Dr. Richard Lamerton, became the first Medical Director of Houston Hospice.

—Karla Goolsby, Houston Hospice Communications Specialist

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