A Dying Wish

Peggy Quinn wanted to make death easier on the terminally ill, but she's made life hard on everyone else.

Quinn was badly shaken. "At 9 p.m. I stood up. I had to leave," she says. "They gave me three days to resign and they said that if I didn't step down by the ninth of February, they'd fire me." She left not knowing what to do.

Looking back on that night and at everything that's happened since, she says sadly, "Anam Chara is my calling, my blessing and my curse."


Anam Chara's financial struggles aren't that unusual. Elder-care programs everywhere -- and hospices, in particular -- have difficulty making ends meet. Although Anam Chara is licensed by the state health department as a personal-care boarding home and differs in many legal ways from a hospice, its financial difficulties are similar.

A personal-care boarding home is defined by state law as "a residential facility that makes available to three or more adults not related to the owner of such facility room and board and personal services, protective oversight and social care due to impaired capacity to live independently, but not to the extent that regular 24-hour medical or nursing care is required." (Because Quinn and Henderson are now caring for just two people in their home, it doesn't have to be licensed as a personal-care boarding home. Instead, they are currently contracting with a home health agency that pays them $9 an hour, forty hours a week to care for Jong Shim and Wanda, even though it's a round-the-clock job.)

Patients don't have to meet any particular criteria to enter these homes, of which there are 537 in Colorado; it's up to the director of the home to determine if the caregivers can meet the patients' needs. The caregivers themselves don't have to meet any stringent criteria, either; all they have to do is complete a two-hour training on administering medication.

Hospice care, on the other hand, is governed by numerous regulations. To enter hospice care, a patient must be told by a doctor that he has six months or less to live, must agree not to receive any life-prolonging treatment and must sign a do-not-resuscitate order. Most hospice companies don't have their own residential-care facilities, as hospice was designed to allow people to live out the last days of their lives in the comfort of their own home, assisted by a team of people trained in managing pain and in helping family members prepare for and cope with the impending death of their loved one. Hospice teams usually include a doctor, a nurse, a nurse's aid, a social worker, a chaplain and volunteers; the patient and his family are part of the team, too, and are involved in every decision. Hospices provide all of the pain-control medication patients need, along with all medical equipment, supplies and staff.

Despite their regulatory differences, hospice teams do work out of personal-care boarding homes, as well as private homes, nursing homes and hospitals. Anam Chara used the Hospice of Boulder County to work with patients before signing up with Namaste.

"As the saying goes, hospice is a philosophy, not a place," says Bev Sloan, CEO of Hospice of Metro Denver, the largest hospice in Colorado. (Hospice of Metro Denver is one of only seven hospices in the state that operate their own residential-care facilities; it has one in Aurora and one on the Presbyterian/St. Luke's campus in Denver. Of the approximately 3,000 hospice programs in the country, only 300 have such facilities.)

The word "hospice" comes from the Latin "hospitium," meaning a rest stop for sick or weary travelers. The modern hospice movement started in England in 1968, with Dr. Cicely Saunders's St. Christopher's Hospice outside of London. The first hospice in the United States started in New Haven, Connecticut, in 1974, and the Hospice of Boulder County, which came along two years later, was the first in Colorado.

Most hospices receive Medicare reimbursement, and some are also Medicaid certified. Medicare covers medical services, such as pharmaceuticals, medical equipment and doctors' and nurses' salaries, while Medicaid covers social services, such as food, shelter and non-professional caregivers' salaries. Since personal-care boarding homes do not provide medical services, they can qualify only for Medicaid reimbursement. The reimbursement rate for hospices is more than double that of personal-care boarding homes simply because hospices cost a lot more to run: Wages for hospice workers range from about $20 an hour to $200 an hour, and medication alone can cost $100 a day per patient; caregivers in personal-care boarding homes, by comparison, earn only $8 to $10 an hour. Hospices get about $113 per patient per day from Medicare, while personal-care boarding homes get the equivalent of $48 per patient each day from Medicaid.

Although the two types of programs are funded differently, they're both in the same situation: Medicaid and Medicare reimbursement rates haven't kept pace with the cost of services.

About 80 percent of hospice patients in Colorado and the rest of the nation are on Medicare, according to Al Canner, executive director of the Colorado Hospice Organization, an educational and charitable nonprofit. A small percentage are on Medicaid, and the rest have private insurance, pay out of pocket or have no insurance. But Medicare funding has been cut every year, while the cost of pharmaceuticals has increased by about 20 percent annually, Sloan says.

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