'It's sacred work': How hospice workers deal with death

CLEVELAND – It is 7:30 in a chapel-like room overlooking the lapping waters of Lake Erie. Ten or so people, some just arriving at work, some finishing a night shift, sit silently below stained-glass windows.

Dr. Kevin Dieter, a hospice care physician, gently suggests they get started. A hospice nurse begins reading names. Between each one, Dieter strikes together two palm-sized Buddhist meditation chimes. Evonne and Molly and Andre and Jerry. Twelve in all.

Twelve patients who were alive three days ago when this ceremony was last held. Twelve who have died since, each having hoped for a death free of pain or distress and, for the lucky ones, bitterness or resentment.

Providing that is the professional mission of all in this room, of all the 935 employees and 3,000 volunteers who work for the 40-year-old nonprofit Hospice of the Western Reserve. Each day they serve 1,200 patients, most of them in hospitals, nursing homes, or their homes, and as many as 88 in one of three inpatient hospice houses.

All will say they've gotten used to hearing the Questions, from family and friends, even their patients' loved ones. "We get asked that all the time," said Tammy Wright, 43, a nurse's assistant in her ninth year doing hospice work. "Why did you ever choose to work there?"

Yet, as intense and exhausting as hospice care is, you seldom hear any of the doctors, nurses, aides, social workers and bereavement counselors describe the job as grim or dispiriting. Instead, they tend to portray the work as deeply fulfilling and, perhaps counterintuitively, life-affirming. And in working in the presence of imminent death, they say they have witnessed sights that defy expectation or explanation.

"We see God working here all the time," said Dee Metzger, 68, a hospice nurse in the Medina Inpatient Hospice Care Center. "All the time."

One phenomenon is "visioning." Usually a day or two before dying, some patients "see" deceased loved ones nearby. Audrey Boylan, 51, a hospice nursing assistant, recalled how a dying patient motioned toward something in the room. "Doesn't your mother look beautiful in that dress," the elderly man said to his adult daughter. His wife had died years before.

The man asked Boylan for a tie. "He wanted to look good for his wife," she said.

On her break, Boylan drove to a thrift shop and picked out a purple-and-black tie. Upon her return, she bathed the man, combed his hair and shaved him. Then she dressed him in a hospital gown and tied the tie as best she could. He beamed.

As more Americans opt for hospice care, keeping hospice workers dedicated and replenished is a growing concern. The number of hospice patients grew 167 percent between 2000 and 2016, to more than 1.4 million, said a 2018 report from the Medicare Payment Advisory Commission. Nearly half of Medicare beneficiaries who died in 2015 had received hospice services. Meanwhile, there is a shortage of hospice care, with not enough caregivers to keep up with an aging population.

The turnover rate at Western Reserve is a surprisingly low 12 percent, said Judy Bartel, chief clinical officer. (Nationally the turnover rate for hospice registered nurses is almost 19 percent.)

Those who quit are the ones who can't leave the work behind when they go home. "It's sacred work," said Lisa Scotese Gallagher, who provides programming to help the staff deal with the stress of their jobs. "But the expectation that we can be immersed in suffering and loss and not be touched by it is unrealistic."

Every week, Dieter loses 10 to 20 patients. But he and his colleagues do not evaluate themselves by the binary formula of life or death. They gauge their professional performance by how they usher their patients to their end. "The most we can do is provide opportunity for our patients to have the best deaths possible for them," he said. "While everyone else is running away from it, we in end-of-life are rushing forward saying, 'We know what you're going through. We want to help.' "

The easier part is relieving the physical symptoms, Dieter said. "Most of death isn't medical, it's spiritual and psychological," he said.

Hospice workers know they can't erase all hurts and resentments. But often they facilitate conversations that can lead to deathbed reconciliations.

"It's an honor to sit there and hold their hands," Boylan said. "To help them find peace and comfort. I consider this God's waiting room."