Solace at last

Pioneering effort shaped the face of hospice in Chicago

By Paul Engleman
Special to the Chicago Tribune

November 30, 2003

The 80-year-old homeless woman spent the last days of her life in a vacant apartment that the building owner let her use. She slept on a cardboard
box and kept her pain pills in a sock. Offhand, Mike Preodor cannot recall her name. But he feels certain that she had a good death.

If anyone is entitled to make such a judgment, it would be hard to find a more qualified candidate than Preodor, president and founding medical
director of Horizon Hospice. Horizon was the first hospice in Chicago and in October marked 25 years of service. During that time, Preodor
estimates, he has been present at about 100 deaths and has been the physician member of a team in caring for thousands of terminally ill
patients.

"All of us have end-of-life concerns," Preodor said. "Mostly about loved ones left behind and whether they'll be financially secure. This woman's
concern was her old bicycle. Our caregivers spent hours trying to help her figure out what to do with it because, to her, it was an important issue."

The plan they came up with was to park the bicycle outside where she could watch through a window to see which neighborhood child would take it. She
did not care who stole the bike. She simply wanted to know who it would be.

"Obviously, this is not the way most people would want to die," Preodor said. "But it was how she wanted to die. On her own terms, in keeping with
her wishes. I think that's a wonderful death."

In 1978, when Horizon Hospice was founded, Chicago was "pretty much a desert" in the area of end-of-life care, said Quentin Young, former chief
of medicine at Cook County Hospital who, at 80, still practices medicine and campaigns unabashedly for a single-payer health-insurance system. "A
dedicated band of organizers took what was then an odd notion and built what is now an invaluable institutional treasure for our city."

The band of organizers was led by Ada Addington, who had been a volunteer at Cook County Hospital, where her husband, Whitney, was chief of pulmonary medicine.

Hospice is not just a place, as some people mistakenly believe. It is a concept of caring for the terminally ill. The idea is to provide physical
comfort and pain relief for people who are dying. With those basic needs met, the thinking goes, a person has a chance to die with dignity and come
to grips with the spiritual and emotional issues related to death.

"The thing that intrigued me the most was that in the old days, this is how people took care of things," Addington said. "Somehow in modern days
that's fallen away. I thought we should try to start one of these, little knowing what it entailed."

She and a few friends began holding weekly meetings at her North Side home. "Droves of people came who knew a lot more about hospice than we
did," she recalled. Finding a doctor was key, and she remembered a resident who had worked under her husband at Cook County.

"There was a group of young doctors there who were very idealistic," Young recalled, "but none more so than Mike Preodor.

"Horizon was a pioneer in the hospice movement in this country, and Mike became a giant in the field of end-of-life care."

At the time Addington was planning to open a hospice, one part of Preodor's practice involved visits to a nursing home, where elderly
patients would be transferred to hospitals for intravenous antibiotics when they developed infections. For one woman over 90, he recommended to her son that what she really needed was comfort and pain relief.

"He cried with relief," Preodor said. "The idea of hospice just made so much sense."

Simple beginning

Horizon started in October 1978 with one patient, one doctor and four volunteers. The following year, 14 volunteers were trained, and an office
was opened with a $35,000 grant from the Chicago Community Trust. A not-for-profit organization, Horizon today cares for nearly 700 patients a
year, with a paid staff of 60 and about 100 volunteers.

One such volunteer is Ruth Ultmann, a retired nurse whose late husband, a University of Chicago doctor, spent the last weeks of his life in hospice
with Horizon. During the 1980s, Ultmann joined with other nurses and physicians in Hyde Park to open Meridian Hospice, which operated for six
years until financial woes forced its closure.

"We modeled our hospice after Horizon," she said. "The thing that impresses me is their total humanity on all levels."

Although people associated with Horizon point to Preodor's leadership as key to its survival and success, he is emphatic about the importance of a
team of caregivers. At Horizon, the team comprises a physician, a nurse, a chaplain, a social worker, a primary caregiver (often a live-in relative
of the dying patient) and a volunteer, who serves the dual role of providing comfort to the patient and relief to the caregiver.

"Hospice brings so much benefit to the patient's family as well as the patient," said Peggy Reth, 51, a nurse who has worked at Horizon for 16
years. "When patients can be comforted and spared pain, it allows them to be more at peace with their own death. It spares the family seeing the
patient suffer."

Working through grief

After a patient dies, Horizon offers a year of bereavement services to help family members work through their grief.

Beyond providing care to patients and their families, Horizon's more critical role may be in its ongoing programs to train physicians and
nurses and join with groups around the country to increase awareness of hospice as an option for end-of-life care.

Deborah Harris, whose husband, Carl, died of cancer at age 40 last fall, was appreciative of Horizon's 24-hour phone service, finding comfort in
being able to speak to a nurse late into the night.

"Any time I needed them they were there," she said. "Everyone I came into contact with was wonderful." She also was touched that two nurses from
Horizon attended her husband's funeral.

Preodor has seen definite gains in acceptance of hospice through the years. Palliative care, which seeks to provide patients with comfort and
pain relief--rather than a cure--has been recognized as a medical specialty for physicians. Hospice care has been approved for reimbursement
under Medicare.

But he also sees wide room for improvement. Preodor cites research showing that although 75 percent of the public knows what hospice is, only 5
percent of physicians ask their patients if hospice is the choice they want to make. He also points to last year's landmark study on dying in
America, Means to a Better End, funded by the Robert Wood Johnson Foundation. That survey found that although 7 out of 10 people say they
wish to die at home, only one in four actually does.

In that report, Illinois received a grade of "poor" for its practices related to end-of-life care, among them its intense scrutiny of doctors
who prescribe narcotics.

"The general level of pain management in this country is still terrible," Preodor said, "and there is absolutely no excuse for that."

Horizon is one of about 30 hospices operating in the Chicago area (Cook, DuPage, Lake and Will Counties). All but six are not-for-profits.

Reth believes one thing that sets Horizon apart in its approach to hospice is physician visits to all patients. Preodor said that something "almost
magical" can take place during home visits.

Serving needs

"When we treat people in a hospital or doctor's office, we're the bosses. That changes when you're in someone's home. You're clearly there to serve
their needs and meet their wishes."

Doing that, he said, can take away much of the sadness that people associate with death.

"I can't say dying is a happy time, but many people find it to be a very meaningful time. Some are able to heal old wounds, resolve old conflicts
and have a sense of peace and closure," he said.

Watching the experience of others, he said, has affected his own thinking about death.

"To me it's no longer a stinging, unhappy or particularly difficult idea. It's a major life event, on a par with other major life events, such as
having a child or getting married. There are thousands who have died before me, there will be thousands who will die after me. Death is just a
natural part of the life cycle."

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