January 24, 2000

Given the choice, few of us would choose to die in a hospital bed. And yet that's where the majority of terminally ill patients spend their final days, sometimes after months of exhausting medical procedures. Only 17 percent of terminally ill Americans use hospice, an alternative founded on quality of end-of-life care.

Hospice services are available virtually everywhere in America; there are as many as 3,000 hospice programs across the United States, serving 450,000 patients and their families every year. Hospice care promises to be more attentive to a dying patient's needs, and it makes the transition easier for the family. Why, then, aren't more families choosing it?

One reason is the lack of physician education. Patients must be referred to hospice care by a physician in order to receive reimbursement from their insurance company or from a government program. In order to encourage patient referrals, hospice programs actively seek to educate physicians about their services, but the learning curve can be steep. Many doctors have no real understanding of hospice care and are not properly trained in the treatment of terminally ill patients.

Even now, medical schools fail to adequately teach care for the dying. Several national medical journals have pointed out this problem in recent reports. A 1997 Journal of the American Medical Association (JAMA) article revealed that medical schools still generally offer little systematic attention to end-of-life care. And according to a survey of medical students at Georgetown University School of Medicine and the Mayo Medical School, "Most of the graduating fourth-year medical students perceived themselves to be unprepared to discuss end-of-life issues with patients ... but wanted to learn more." The survey, published in a 1998 issue of Academic Medicine, revealed several disturbing facts:

Eighty percent of the students surveyed for the Academic Medicine report would have liked more medical school education in this area. The irony, the report points out, is that every medical school in the country trains its students to deliver a baby, regardless of their specialty, yet there are no standard requirements for a physician to care for dying patients.

Other factors are essentially cultural. In the United States, patients have a tendency to deny that they are dying and to continue prolonged treatments. In addition, doctors who treat terminally ill patients are often fearful of referring someone too early to hospice -- what if, for instance, the patient could have benefited from one last operation or chemotherapy treatment? The specter of a malpractice suit can be enough to scare many doctors into trying to "save" terminally ill patients with aggressive medical procedures, even when the patients can no longer benefit from them. The National Hospice Organization (NHO), the trade group that represents the nation's hospices, took a survey of hospice caregivers that reflects these cultural tendencies. According to an NHO newsletter published earlier this year, the top two reasons why hospice is underutilized are "physician reluctance to refer patients ... and more aggressive treatments -- factors which many hospices consider to be interrelated."

What does all this mean to the hospice industry and to the future of quality end-of-life care? Dr. J. R. Williams, the chief medical officer at Vitas Healthcare Corp., the largest for-profit hospice group in the country, is concerned that doctors' reluctance to refer patients to hospice creates a marked decrease in "length of stay" for terminally ill patients. The optimum period for a hospice team to be able to improve the quality of someone's end-of-life experience is 90 days. The federal guideline for length of stay goes even further, reimbursing for up to six months, and sometimes beyond. Yet many patients don't know their options. "I've seen several examples of patients being referred to us one or two days before they die," says Dr. Williams. In those cases, "We don't have enough time to give the patient the kind of care we are trained to give," he explains.

"Patients are definitely being sent to us later and later," explains Marjorie Mulanax, the executive director of Hospice Austin, a nonprofit organization serving urban and rural Central Texas. "Half of our patients are here for twenty-one days or less, and thirty percent are with us for seven days or less. There's very little time to prepare," says Mulanax. She attributes these late referrals, at least in part, to society's tendency to expect medical miracles and to the scrutiny that doctors go through when they "give up" on a dying patient.

Figures from the NHO reveal that "lengths of stay" at hospices nationwide have decreased from an average of 64 days in 1992 to 51.3 days in 1998. The median length of stay -- the point at which exactly half the patients fall above or below -- is only 25 days nationwide. More than 50 percent of dying patients, then, are in hospice for less than a month.

Dr. Williams says if anything will change the way this country views death and dying, it will be the aging baby boomer generation and the sheer force of their health demands. Education is the only way the medical community can be prepared to serve the growing needs of aging patients. "There's a lot of interest in the medical community in end-of-life care," he explains, "but there is not enough activity in the training arena, and we're interested in changing that." To that end, Dr. Williams started the Vitas Hospice Charitable Fund as a vehicle for research and education in end-of-life care at Duke University Medical School. The fund will also assist patients and families who have special financial needs.

Stanford University and Harvard Medical School have launched nationwide training programs for physicians and nurse faculty to teach end-of-life care to their students. The American Medical Association (AMA) recently sponsored a training program to teach 250 doctors around the country how to treat the terminally ill. As part of the organization's goal to "educate physicians across the United States on the essential clinical competencies in end-of-life care," every physician registered with the AMA will receive the program's curriculum on CD-ROM.

Other programs call for grassroots movements in local communities to promote end-of-life care. The hope is that it will become part of our social consciousness -- a service patients will ultimately demand. Erika Blacksher, the deputy director of a privately funded program called the Community-State Partnerships to Improve End of Life Care, is focusing on the public policy and practice level.

"We're working with over two hundred organizations of all sorts -- state agencies, hospitals, universities, and hospices -- to identify the barriers in their states to better end-of-life care and set about removing those barriers," Blacksher says. Her group is forming local coalitions all over the country to deal with advanced care planning, pain management, long-term-care settings, and better reimbursement strategies. "We're asking citizens about their experiences, and believe they should be used as experts alongside other experts. We want their opinions about how to go about changing things in their state for the better.... Central to all of our projects," she says, "is that the citizenry is involved. We're not just interested in patient education, but in public engagement."

Such grassroots movements, combined with more medical school education programs, could help change the way Americans think of death. Our fear of the inevitable could be relieved by the knowledge that quality of life, not quantity of years, is what offers us happiness. In the chaos of physical illness and pain, we tend to forget that we are not simply the sum total of our bodily needs, but complex spiritual, intellectual, and physical beings seeking fulfillment. After protracted efforts have been made to "save" a patient's life on the operating table, turning to hospice care may eventually be viewed not as succumbing to illness, but rather as choosing to rest in peace.

Read about one family's experience with hospice care in "A Rest in Peace."

More information about hospice care

For more information about hospice care, and to find a hospice care facility in your area, go to the National Hospice Organization website.

To read about or get involved with a national campaign to educate the public and the medical community about hospice care, visit the Last Acts website.

Bill Moyers and his wife, Judith, are documenting the movement to improve end-of-life care for a television series called "On Our Own Terms." An outreach program to educate and involve communities in the end-of-life movement accompanies the series, which will air in the fall of 2000. To get involved or to find out more, visit their website.

The Community-State Partnerships to Improve End-Of-Life Care program is coordinated by the Midwest Bioethics Center and funded by the Robert Wood Johnson Foundation. For information on corresponding programs in your state, visit the center's website.