Although the first American hospice specializing in care for dying patients opened in 1974, the concept is far from new. In the ancient Tibetan Book of the Dead, readers received guidance about how to die consciously, in a state of spiritual enlightenment. A medieval Christian text describes Ars Moriendi, the art of dying. And historians have documented the existence of special homes and facilities for end-of-life care in ancient Rome and Syria.
The Latin word “hospes” meant both host and guest. For hundreds of years, “hospice” was a familiar word, referring to a house of rest and entertainment for pilgrims, travelers or strangers, and for the destitute or the sick.
“In medieval times, dying persons were seen as prophetic souls, wrote Sandol Stoddard, The Hospice Movement: A Better Way of Caring for the Dying. “They were voyagers and pilgrims valuable to the community in a number of ways, not least in the opportunity they provided those around them for service and spiritual growth.”
So, it was logical when, in the early 1960s, Cicley Saunders, MD, adopted the term “hospice” as the name for a program she was establishing at St. Christopher’s in London. Her approach charted new directions in both philosophy and techniques for treating terminally ill patients.
“The name was chosen because this will be something between and hospital and a home, with the skills of one and the hospitality, warmth and the time of the other,” said Saunders.
Hospice comes to the U.S.
Soon afterward, Saunders was invited to visit Yale University to lecture to medical students, nurses, social workers and chaplains on her concept of holistic hospice care.
“You matter because you are you,” Saunders is said to have explained to her hospice patients. “You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”
Saunders presentation inspired Florence Wald, then the dean of the Yale School of Nursing, to take a sabbatical to work at St. Christopher’s, to learn everything she could about hospice.
In 1974, Wald helped found the Connecticut Hospice in Branford, the first in the U.S. Regarded as the role model for many hospices that followed, the 44-bed facility operated in a former private home, with hospice-trained nurses and physicians, and a homelike atmosphere for family and friends.
But acceptance of the hospice concept was not automatic. “The idea ran against the current. Amercan-style medicine had little interest in tending to the needs of the dying or of their families,” said Bill Lamers, MD, founder of the Hospice of Marin County [CA], the first on the West Coast. “Over time, though, hospice had made a seminal contribution to the science of pain and symptom management. That development has helped convert many physicians.”
Medicare and hospice care
In 1982, Medicare added hospice care to its roster of covered services, reserving coverage for terminally ill patients with less than six months to live. According to a report issued by the Hospice Association of America, from 1984 to January 2010, the total number of hospices participating in Medicare rose from 31 to 3,407, a nearly 110-fold increase. Of these hospices, 2,278 are free-standing, 578 are home health agency-based, 531 are hospital-based, and 20 are skilled nursing facility-based. There are also an estimated 200 additional volunteer agencies that are not Medicare-certified.
Despite this dramatic increase, the Medicare hospice benefit represents a relatively small proportion of total Medicare spending, says the Hospice Association of America. In 2009, an estimated 2.8 percent of Medicare benefit payments were spent on hospice care.
In hospice’s early days in the U.S, the vast majority of hospice patients had a diagnosis of terminal cancer. That balance has shifted dramatically in recent years, with a much larger share of the Medicare hospice population having diagnoses of neurological, cardiac or other conditions. There’s been a parallel shift away from in-patient, institutional hospice care to home-based care.
And, as with everything else in healthcare, costs are on the rise. “Medicare’s bill for hospice care rose to more than $12 billion in 2009 from $2.9 billion in 2000. Although the benefit is intended for patients who have no more than six months to live, 19 percent now receive hospice services for longer,” reports the New York Times.
So, Medicare reimbursements for hospice care are on the political chopping block. As part of health reform legislation enacted in 2010, Congress mandated that Medicare revise its payment system for hospice services, with changes to go into effect in late 2013.
The future of hospice
Trends indicate that as more patients and families are educated about its many benefits, hospice is growing as an attractive alternative to facing death in a clinical setting. The Hospice Foundation’s report puts it this way:
Nevertheless, only a fraction of those who have the option of hospice care choose toparticipate in it. Physicians and nurses caring for patients with terminal illnesses in clinical facilities need to open the dialogue with families about the option of hospice and its possible benefits to patients and their caregivers.
Until clinicians, patients, and families become more comfortable talking about death and the dying process, hospice will remain marginalized as an excellent option for accessing supportive services during an extremely difficult time.
[Editor’s note: This article by Gloria Shur Bilchik was originally published in 100 Faces of Healthcare. It has been updated and reprinted with permission of Health Forum, Inc.]
Image credit: Columbia Missourian