Perhaps the most difficult experience of anyone's life is standing by helplessly as a family member nears death. To ease matters for both the family and the dying person, a movement known as hospice has spread from Britain to the U. S. in the past decade. Some 1,700 hospice groups now operate throughout the country.
Many people view a hospice as a place where terminally ill people spend their last days. "By and large, they're wrong," says Baylee Gordon, executive director of Pittsburgh's South Hill Family Hospice. "It's a philosophy, not a place." An in-patient facility is a rarity. Rather, the emphasis is on home care, so people can enjoy what remains of life in familiar surroundings, free of pain.
Admittance to a hospice program requires a doctor's statement that, if illness runs its normal course, the patient has only months to live. And the individual (or someone with power of attorney) must acknowledge that the plan involves no aggressive or curative treatment. All care is palliative--to control pain and symptoms only.
Costs are usually covered by medicare and most health insurance plans. On average, a hospice gets $80 a day for "routine home care," where family members are trained to look after the patient. If a nurse is required for eight or more hours, the cost hits $465; it's about $350 when a person is in an in-patient facility.
SIMPLICITY. Taught by hospice doctors and nurses, relatives learn to administer painkillers or handle intravenous lines. "Family members are invariably willing to do anything they can, and today's technology makes things easier," says Elle Steinhardt of Manhattan's Cabrini Hospice. She points to a bedside device that resembles a humidifier. "For someone requiring oxygen, it compresses what's in the air, so there's no need for tanks and gauges." And a nurse canbe telephoned at any time toprovide advice or comfort.Along with the medical team, each hospice has a pastoral-care director and a social worker. "Only a handful of hospices cater to a particular religion," notes John Mahoney, who heads the National Hospice Organization (NHO) in Arlington, Va. But on request, a hospice will call a clergyman of a specific faith. The social worker assesses special needs--sitters for children, for instance. And volunteers do everything from clerical work to holding a patient's hand or listening sympathetically to a disconsolate spouse.
With hospice programs standardized, most families simply choose one nearest home. A referral typically comes from a hospital "discharge planner" or social worker, not a doctor. At 800 658-8898, the NHO can pinpoint one near you. "But be clear on what you're getting," says Mahoney. "It's not a round-the-clock nursing service." Instead, as one hospice's nurse supervisor puts it, you get "attention from people who want to help you live as well as you can, as long as you can."