Many families wait too long to seek help from Hospice

March 21, 1997


Staff Writer

Laurie Ruck is a nurse, but that didn't make it any easier to cope when her mother was diagnosed with lung cancer.

She contacted Hospice of Washington County Inc., which provided services for 12 days as she cared for her mother, Mildred Ruck, in their Hagerstown home.

Mildred Ruck died last Thanksgiving Day at age 72, 15 months after she learned she had the disease.

Laurie Ruck says she regrets that she didn't call Hospice earlier.

"It might have helped me face things a little sooner," she says.

Late referrals are the toughest obstacle to providing effective Hospice services to those with terminal illnesses, says Margaret Cogswell, executive director of Hospice of the Panhandle Inc. in Martinsburg, W.Va.


"We do good care in a short period of time, but we know we could do more," Cogswell says.

Hospice professionals and volunteers address medical, social, psychological and spiritual needs of the patient and his or her family. Hospice care is covered by Medicare, Medicaid and most private insurance plans.

Hospice's goal is to make the most of the time a patient has left, says Bob Rauch, executive director of Hospice of Washington County.

"We want those people to be out in the community, doing whatever is important to them," Rauch says. "We're not just about dying, we're about living."

Nationwide problem

Late referrals are a problem nationwide, says Jennifer Morales, communications manager at National Hospice Organization, a nonprofit agency based in Arlington, Va., that advocates for the needs of terminally ill persons.

There are about 2,800 Hospice programs in the United States and Puerto Rico, she says.

The median length of stay in a Hospice program in the United States is 36 days, according to a study reported in New England Journal of Medicine last July. About 15 percent of patients died within seven days of being enrolled.

Hospice of the Panhandle, which serves Berkeley, Jefferson, Morgan and Hampshire counties in West Virginia, had 219 patients in its program in 1996, and the average length of stay was 58 days.

Last year at Hospice of Washington County, 193 patients were enrolled, with an average length of stay of about two months.

When to call

Hospice referrals can come from a variety of sources, including physicians, home-health and social service agencies, counselors, family members and the patients themselves.

Many people think a patient has to be confined to a hospital bed to need Hospice care, or that a physician's referral is needed, Cogswell says.

Another misconception is that Hospice is only for those who have cancer, Rauch says. Other illnesses include end-stage heart disease, lung disease, neurological disease and AIDS - acquired immune deficiency syndrome.

Fifty percent of the referrals to Hospice of the Panhandle come from physicians, and the other half is divided equally between health-care providers and patients, family and friends, Cogswell says.

At Hospice of Washington County, one-third of referrals come from physicians, another third from agencies and the remainder from patients and their families, Rauch says.

Hospice care should be considered when the emphasis has shifted from cure to comfort, Cogswell says. When the patient's physician says nothing else can be done to cure the illness, the key is to make the patient as comfortable as possible.

Why people wait

Ruck says Hospice's services were valuable to her, but they would have been more so if she'd contacted the organization sooner.

"Part of it was denial; if I called in Hospice, I'd think it was true, my mom was going to die," Ruck says.

Ruck says Hospice helped by managing Mildred Ruck's pain and helping her understand her mother's behavior.

"She wouldn't talk, and she'd stare like she was looking right through you," she says.

She says that wasn't characteristic of Mildred Ruck, who had a good sense of humor and wasn't a worrier.

"She had a positive attitude, and she faced things as they came," she says.

Cogswell says the greatest barrier to care is that people don't know what Hospice does or the extent of its services.

Home visits by nurses, aides, social workers, pastors and volunteers provide comfort for the patient, as well as emotional, practical and spiritual support for the patient and family. The Hospice benefit covers medicines, hospital equipment and supplies, which can save the family money, she says.

After a patient dies, Hospice also offers bereavement counseling.

To illustrate Hospice's importance to families, Cogswell cites a recent incident in which a Hospice nurse went to a funeral home to see the family of a patient who had died.

"The patient's mother said, `He's with God now, but he's been in the company of angels since Hospice came,' " Cogswell says.

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