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Easing the Final Days

By Jacqueline L. Salmon
Washington Post Staff Writer
Sunday, April 17, 2005; Page LZ03

Gene May reacted to the news of his impending death with characteristic level-headedness.

The 80-year-old former home builder from McLean, who learned just over a year ago that his lung cancer was terminal, bought more furnace filters, taught his wife, Barbara, how to handle the family finances and even budgeted $6,000 for his own funeral. And he signed up for hospice care, a service that provides comfort and medical care to those facing terminal illnesses.

Gene May, an 80-year-old former home builder, signed up for hospice care after learning last year that his lung cancer was terminal. (Larry Morris -- The Washington Post)

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Where to Learn More

The following Web sites offer information about hospices and related issues:

• Hospice Net. All about hospices for patients and families, www.hospicenet.org.

• National Hospice and Palliative Care Organization. Information and a database of hospices in each state, www.caringinfo.org or 800-658-8898.

• AARP Web site on caregiving and end-of-life issues, www.aarp.org/life/caregiving.

• American Hospice Foundation, www.americanhospice.org.

• Hospice Patients Alliance, www.hospicepatients.org.

• Growth House. For people with terminal illnesses, www.growthhouse.org.

• Webhealing.com. A Web site run by a D.C. psychotherapist for people dealing with grief and related issues, www.webhealing.com.

• Advance directive. Form for use in Virginia, the District and Maryland that allows you to appoint someone to make health care decisions for you and to indicate what treatment you do or do not want if you are unable to make those decisions yourself, www.capitalhospice.org; click on "Advance Directive-Living Will."

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These days, a nurse from Capital Hospice visits the Mays once or twice a week. A social worker and a doctor also drop in. A chaplain has come by, at Gene's request, to discuss the afterlife.

"They take care of all of us," said Barbara.

Aside from a sore back, unrelated to the illness, said Gene, "I'm weak, but I'm feeling no pain."

Recent high-profile deaths -- Terri Schiavo, amid the messy family struggle over her treatment wishes, and Pope John Paul II, who died at his home at the Vatican instead of returning to a hospital -- have focused attention for many Americans on how they want to face the end of their lives.

But the hospice movement, as it is called, has been focused on such issues since the 1960s, when a British physician introduced the concept of specialized care for the dying in the United States.

Hospice care offers a customized regimen of medical care, pain management and emotional and spiritual support to the dying, most often in their homes. Its guiding principle, say hospice leaders, is that it "neither prolongs life nor hastens death."

For people such as Gene May, hospice care has made the end-of-life journey smoother and less distressing.

But for the organization providing it, Fairfax-based Capital Hospice, these are challenging times.

Capital Hospice began 28 years ago as Hospice of Northern Virginia, and is one of the oldest such programs in the country. It has grown into one of the nation's largest hospice programs, last year caring for 4,000 patients in Northern Virginia, the District and Prince George's County. But rising costs and flattening insurance reimbursement rates have yielded deficits in Capital Hospice's budget in recent years. It is also contending with a growing number of competing hospice programs in the Washington area.

Yet Capital Hospice chief executive David English said he is not worried. "I actually like competition," he said. "It makes us better."

Nationwide, just over 28 percent of the 2.4 million people who died last year were in hospice care, according to the National Hospice and Palliative Care Organization. But some local hospice officials say they believe the percentage in the Washington area is closer to 10 percent. Although no one knows for sure why hospice use locally appears to be lower, some specialists theorized that it could be related to the high number of affluent patients with good insurance coverage and some doctors who want to treat terminal disease aggressively. The easy availability of clinical trials in the Washington area also makes it possible for terminally ill patients to pursue experimental treatments when conventional ones fail.

For those patients and doctors, said Susie Huyer, administrator of the Fairfax office of Heartland Home Health Care & Hospice, turning to a hospice could be seen as an admission of failure.

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