Archive : Spring 2007


GOING GENTLY:
No antiseptic wards // No long-shot measures // No eleventh-hour heroics // Simply, at the end, a decision to choose quality over quantity.

At Home in Hospice


W hen Franklin Wyman, 85, was diagnosed with acute leukemia in December, he thought about        how he wanted to die. He could stay in the hospital and perhaps gain a year of? life with aggressive treatment. Or he could return to his suburban home outside Boston, where he and his wife could get whatever help they needed, medical and nonmedical, from a nearby hospice. “I’ve had a very good life,” says Wyman, a retired investment banker. “What would be the point of making drastic efforts that might, or might not, keep me alive for another year?”

For now, Wyman doesn’t need much help from Partners Hospice in Waltham, Mass. A nurse stops by to see how he’s doing and to make sure he has medication to relieve his arthritis pain. A walker, a wheelchair and a portable oxygen generator have been delivered for future use, and the members of his clinical team—a physician, nurses and home-health aides—stand ready to address any discomfort he experiences. There’s also a pastoral counselor and a medical social worker to help Wyman and his family deal with depression, anxiety and spiritual issues.

What Wyman won’t receive is treatment to extend his life. “Hospice recognizes dying as part of the normal process of living and focuses on maintaining the quality of the life one has left,” says Marcia Reissig, former president of Partners Home Care, which owns the hospice. Wyman appreciates having that opportunity, and spends his days reading, surfing the Internet and visiting with family and friends. “It’s important to me to maintain my dignity until the very end and to be a good example for my family,” he says.

Given a choice, it’s likely that most people would prefer to end their lives in much the same way. But that’s not how the final weeks usually play out. Most Americans spend their last days in acute-care hospitals and nursing homes, often amid a flurry of desperate though futile medical measures. Half of those who die in hospitals endure pain at least half the time, while almost 40% spend 10 days or more on a ventilator.

By 2030, one-fifth of the U.S. population will be older than 65, and by 2040, the death rate is expected to nearly double from current levels to about 4.1 million deaths annually. Those demographic shifts add urgency to the debate over the American way of dying, and hospice has become an important part of the conversation. Increasing numbers of terminally ill patients have come to view hospice not as a plan for giving up the fight but as a way to emphasize the quality of life during their remaining days. Already, one in three deaths in the United States takes place in hospice, and the aging of the baby boom generation is likely to accelerate that trend.

Still, fewer than half the patients who could use hospice programs end up in one, and for those who do, the time they spend there is frequently short, often fewer than seven days. The hospice industry, meanwhile, is struggling to adjust to new realities, as rapid advances in life-prolonging technologies raise complex medical, ethical and legal issues. There’s also increased competition among providers, spurred in part by for-profit groups that see hospice as a business, not a philanthropic service.

“The hospice industry is evolving,” says Melissa Carlson, an instructor at the Mount Sinai School of Medicine in New York City. The next few years could be crucial, as more patients choose hospice and more programs enter the marketplace. “The stakes are high,” Carlson adds. “Is care going to get better or worse for this very vulnerable patient group?”

The modern hospice movement, with its aim of addressing both the physical and emotional suffering of terminally ill patients, was founded at St. Christopher’s Hospice near London in 1967 by Dame Cicely Saunders, a British nurse turned physician. Saunders also influenced the founding of the first U.S. hospice in 1974; Florence Wald, then dean of the Yale University Nursing School, had taken a sabbatical to work at St. Christopher’s before helping to get the Connecticut Hospice in Branford up and running.

Several dozen other hospices, charitable endeavors run mostly by volunteers, were established during the following years. But the red-letter date for the hospice movement in the United States didn’t arrive until 1983. With the AIDS epidemic raging, the government created a Medicare hospice benefit.

Since then, the hospice industry has grown steadily. In 2005 more than 1.2 million patients received end-of-life care in more than 4,100 hospice programs. And today, with hospice admissions rising by almost 10% a year—with 75,000 to 125,000 new patients annually, according to the National Hospice and Palliative Care Organization (NHPCO)—the industry is struggling to keep up. During the past 18 months alone, more than 500 hospices have been started. And though more than 90% of hospice patients still receive their care at home, nursing homes and even hospitals are increasingly opening on-site options.

Yet even now, people interested in hospice care often face obstacles. In 13 states, including Florida and New York, hospices are governed by certificate-of-need laws that tend to limit the number of organizations operating there. And Medicare places severe limits on who qualifies for payment. A doctor must certify that a patient has six months or less to live and has agreed to halt such life-prolonging treatments as dialysis, chemotherapy and radiation. Some in the medical community dub this the “terrible choice” because it requires a patient not only to throw in the towel but to forgo care that may fall into the gray area between extending life and improving the quality of what remains.



Next page  |  Pages: 1  2  3


Photographs by Annabel Clark
© Massachusetts General Hospital, 2007.  |  55 Fruit Street, Boston, MA 02114  |  617.726.7857  |  Subscribe  |  Our Advertisers