When nurse Joy Ufema began to specialize in treating the dying in 1973, she hoped to make the end of their lives as dignified as possible. They ended up teaching her as much as she did them.
“I learned from those patients how to get my own life in order,” Ufema, 38, says. “Many of them told me, ‘Joy, make sure your life isn’t full of things you should have done.’ ”
The advice was heeded, but not as a license to eat, drink and be merry. Instead, Ufema became even more determined in her work. Today she is a strident, abrasive champion of the hospice movement to aid the dying and their families. After 60 Minutes covered her in January 1977, she got a call from actress Linda Lavin, who wanted to produce a film based on Ufema’s life.
In making A Matter of Life and Death, scheduled to air January 13 on CBS, Lavin, too, was moved. “Once you deal with the inevitability of death,” she says, “you can deal with your life. We can correct our mistakes, but first we must admit they are mistakes.” (In possible response to these discoveries, Lavin filed for divorce from husband Ron Leibman last month.)
Joy’s interest in dying patients was kindled at Harrisburg (Pa.) Hospital, where she started in 1972 as a urology nurse. “I didn’t fit in,” Ufema recalls. “I spent a lot of time talking with patients instead of recording their bowel movements.” After hearing a speech by death guru Elisabeth Kübler-Ross, Joy persuaded the hospital to let her tend the terminally ill.
She granted many patients’ last wishes, once smuggling two kittens into the hospital for a 5-year-old boy with leukemia. But Joy often aroused antagonism among her colleagues. Nurses complained that she was allowed too much latitude. One day, for instance, she left the hospital with a dying boy to take him horseback riding. “I was aggressive with nurses who treated patients abysmally,” she admits. “I wouldn’t take that crap that the patient was the doctor’s property.”
Publicity about Joy’s work, plus a case where she advocated “psychic” healing, led to conflicts between her and the administration, Joy contends. In late 1978 she resigned, storming into the office of a hospital administrator and shouting, “You’re going to die a rough death psychologically.” Ufema’s last supervisor at Harrisburg, Tanya Wagner, says, “Joy’s intentions were good. But she wanted to deal with patients on her own; she put down nursing and the medical community to make herself look good.”
Ufema set up a private death-counseling practice in Harrisburg which closed after a year because of financial problems. Last March she opened the Hospice of Lancaster County, a counseling center whose $65,000 annual budget is supported by private donations. Most medical insurance does not cover hospice services.
“My goal is to hire a team of nurses who would assist families round the clock, if needed,” says Ufema. So far her hospice has treated 50 patients, most at home. Says one, Joe Marchegiani, “When I found out I had cancer, the bottom of my world fell out. Joy turned my life around.”
Ufema’s father, a machinist for the Pennsylvania Railroad in Altoona, died when she was 22. “I never knew who he was as a person—and I’ve resented that I never asked him,” Joy says.
After high school, she flunked out of nurses’ training and “bummed around for a while.” During a stint at Warren State Hospital as a psychiatric aide, she recalls, “I would hold patients under cold showers because I was told to. I used to come home with my lip split, tufts of hair out, and I’d think, ‘There is really something wrong here.’ ” She moved to Harrisburg and went back into nurses’ training.
Ufema, who is divorced, now lives alone in a five-room home on 18 acres in Dillsburg. To relax, she hunts antiques, reads about the Old West and rides her palomino, Brandy. Joy built both her house and barn, helped by patients’ families.
“I tell people I love that I love them,” Joy says. “I don’t take them for granted anymore. When I’m on my deathbed, I want to remember the time I brought pizza and beer to that patient or when I went wading alone in a stream. I don’t want to have one ‘should have.’ ”