A Place to Die: Hospices Preserve Dignity for the Doomed

In a fit of depression, when her third bout with cancer was sounding the death knell, Julia Gebersky inquired through others whether her son, Robert, had a gun and if he could shoot.

Incontinent, her body scarred by bedsores, she had become a prisoner of her own helplessness. If euthanasia were legal, her son said, he would have helped his mother kill herself.

But there was another way out for Julie Gebersky. Like nearly 200,000 patients a year, she awaited death in a hospice, a way station for terminally ill people that treats them not to prolong life, but to ease the dying and minimize pain.

Bob Gery’s mother died without much discomfort in the gentle hands of the Connecticut Hospice, as his father had died of cancer nearly 13 years ago, under the same hospice care.

In that time span, the number of hospice care programs in the United States has grown from fewer than 100 to nearly 1,700, according to a 1988 survey by the National Hospice Organization in Arlington, Va., which provides technical services to its 900 members.

90% of Care in Home

Although the care of the dying is much the same and about 90% of it takes place in the home, many types of organizations run hospice programs. For example, 41.8% of them are independently run; 26.6% are run by hospitals, 22.4% by home-visiting agencies and 9.2% by a coalition of organizations such as nursing homes and hospitals that work together.

“Hospice is not a place, it’s a program of care,” Ira Bates, vice president of the National Hospice Organization, said. “We are the only (service) that defines the unit of care as both the patient and the family.”

A hospice does this by sending a team of volunteers and social workers to the home to help with housework and personal problems, to help keep the vigil so that family members can take a break and to help with funeral arrangements once the patient dies. Afterward, hospice workers keep in touch with the family for at least a year and try to comfort the survivors.

Many hospice programs are based in office buildings and lease their beds from hospitals and nursing homes. “If there is a crisis in the family, then we can provide continuous care in the home around the clock,” Bates said. “If that’s not enough, then we can move the patient to an inpatient setting.”

The modern-day system began in England in 1967, when Cicely Saunders, a British physician, founded St. Christopher’s Hospice.

What brought it about, hospice officials say, were the technical advances in medicine since the mid-1950s and the increasingly common situation of terminally ill patients being kept alive, sometimes against their wishes and the wishes of their families and at great cost in suffering and financial sacrifice.

A Cruel Hand

Some of those who have been dealt one of life’s cruelest hands, AIDS patients who are both dying and homeless, take refuge in programs such as the Connecticut Hospice, the first and oldest in the United States and a leader in caring for the terminally ill for the last 20 years.

The Connecticut Hospice began caring for the dying in their homes in March, 1974, and opened a 44-bed inpatient center in July, 1980, in Branford. Two years ago, it bought an adjacent property and converted the house on it into a cottage with five beds for dying people who have no home or no one to care for them.

Bates said that the Connecticut Hospice is unique in its high proportion of inpatient care. It serves as a teaching hospice as well.

The average hospice, Bates said, has three or four beds, a paid staff of eight and 50 volunteers to deal with about 110 patients a year. Each year, about 10% of those in hospices leave to seek other treatment or because of remission.

Although about 90% of hospice patients are elderly people with cancer, the ‘80s have brought the challenge of younger people afflicted with AIDS, either cast aside by society or in self-imposed exile to keep loved ones from seeing them at their worst.

The latest data from the National Hospice Organization show that hospices served about 2,100 AIDS patients in 1986, of 154,700 patients in all. Later figures are not available, but Bates predicted that the number of AIDS patients in hospices will reach 6,000 or 7,000.

Among them are men like Keith Jackson, 27, and Eddie Muniz, 36. They found their way to the Connecticut Hospice cottage last year, their gaunt bodies implanted with catheters, their shoulders propped up by hospice volunteers and friends so they could walk, barely able to speak and slurring their speech almost as if from a stroke, and coughing, coughing, coughing.

Self-Exiled Father

“I got a home, but I don’t want to be near the girls because I’ve been sick,” Muniz, an admitted drug dealer with daughters ages 8, 10 and 12, told a visitor last November. “I know I’m gone. I don’t want to go. . .” He paused. “Yet.”

Jackson, a fashion model who is gay, lived with his divorced mother until she died two years ago. He said he would rather live in the cottage than move in with his father or siblings. “This is my home,” he said.

Nurses, the heart of hospice care, and volunteers, the soul, give the men medication, feed them, do their laundry and take them out to dinner and to shop. Like many of the terminally ill, they dread, above all, dying alone, in confusion and fear. The hospice quietly eases such apprehensions.

For “sundowners,” those who fear the night and sleep by day, relatives often bed down in inpatient hospices like the Connecticut Hospice. Other hospices operate in a wing or ward in a hospital.

“One of the big complaints is that dying is so sterile,” said Pat Jones, executive vice president of the Hospice Assn. of America, a Washington lobby that represents 1,300 hospices. “People were isolated in a hospital room, maybe the family couldn’t come in. I think it’s related to the need to be in control of one’s life. I don’t think it’s an accident that hospice started coming into being around the same time as home birth. It’s taking dying back into the family, into the home.”

Indeed, Bates said: “Most people want to die at home; 98% will say, ‘I want to be at home with my wife and family.’ So we make that possible.”

All of medicine, Bates said, is moving toward more choices, the kind of choices made by Julia Gebersky and by Mark Marcucci, a 57-year-old retired steelworker from Bethel Park, Pa.

Done With Hospitals

Like others with incurable cancer, they decided that they had had enough of hospitals and doctors and that there was little more that could be done beyond keeping them comfortable.

Gebersky died as she wished, surrounded by her loved ones and free of the dreaded tubes. She had been cared for at her apartment in neighboring Hamden by a Connecticut Hospice nurse who looked in on her twice a week, an outside nurse and a private, live-in aide.

Gebersky fought cancer of the parotid gland, near the ear, through surgery and radiation for seven years. Her condition worsened last fall and at her age, 76, she decided against further chemotherapy.

Her apartment had been decorated for a last Thanksgiving dinner with the family and there was a Christmas tree in case there was time for that, but she slipped into a coma and was moved to the Connecticut Hospice at Branford, where she died on Thanksgiving Day.

Christmas Tree Gift

One of her last wishes was to give the artificial Christmas tree to the hospice, and Bob Gery, one of her sons, did that.

Gery’s father, Benjamin, 64, died at home of cancer on May 11, 1976, four years before the inpatient hospice was built.

After his father died, Gery (who shortened his surname) served on the board of Connecticut Hospice for five years, helping to raise funds for the nonprofit organization.

“You always know where the good service is for this type of care,” he said. “The most important thing was that Connecticut Hospice would respect her wish to die with dignity. That’s basically where hospice distinguished itself from hospitals.”

Mark Marcucci called it quits after a struggling four years with colon cancer. He had been in and out of hospitals and had had a colostomy, catheterization and intravenous morphine for pain. He had shrunk from 215 pounds to 140 pounds and had begun suffer from hallucinations.

When his wife of 26 years, Pat, could no longer care for him at home, he was admitted last summer to the Forbes Hospice in Pittsburgh, a division of the Forbes Health System that includes hospitals and a gerontology center.

Death Comes at Home

He stayed at the hospice five days, then came home to die with his wife and two sons at his side. Death came on Aug. 9. “We kept him comfortable, propped up, and just sat there with him,” Pat recalled. “It’s not that they didn’t treat him well at the hospice. I just think he wanted to be with us.”

Generally, hospice care is for those expected to live no longer than six months.

Coincidentally, Bates said, “any strategy that keeps people out of hospitals saves loads of money.” He estimates taxpayer savings of 20% to 40% on Medicare for patients 65 and older and for medical plans, many of which now cover hospice benefits.

Beyond that, Bates said, most hospices are committed to providing care regardless of the patient’s ability to pay. Since reimbursements rarely cover expenses, most hospices rely on grants and donations

“We’re trying to make inpatient hospice as home-like as possible and homes have children,” Hurzeler says.

Often, nurses or family members wheel the patients to the picture window to look in on the children. The children make rounds delivering mail and telephone books, stopping to say hello to the patients whose frail bodies are bundled in pajamas, bulky sweaters and blankets.

“Wonderful,” says the plumber. “The kids here are nice, beautiful children.”

One child jumped onto the bed with her grandmother, who by coincidence was a patient. “Are you dead yet?” she asked, in that innocence characteristic of children who often don’t understand death is forever.

Several children walked past an old man, slumped over in his chair, grieving over the death of his wife only an hour earlier. They said nothing. But the old man straightened up and said to a nurse: “Well, life does go on, doesn’t it?”

Feeling Other Part of Life

“That’s exactly what we’re here for,” says Barbara Steinau, director of the school. “He encapsulated that whole thing of we’re here to help people feel the other part of life, that there’s an ending and then there are beginnings.”

Steinau says some people worry that the children will get upset by being in the hospice, witnessing death. But, she says, the children don’t know that the patients are dying.

“I thought I would tell them when I came to work here,” she says. “But it became clear to me they’re children of the moment and so you can’t say these patients are dying or they think if they watch for another minute they’ll die.”

While death is not that sudden, it is quick in most cases. The average stay in the hospice is two weeks. An average of three patients die every day.

“We work helping people to focus on the fact that once the patient is here, as painful as that may be, there’s a gift in that, an acknowledgement that time is limited,” says Marilyn Innis, social work supervisor. “We should make the best use of this time to help family members to think, when it’s all over, what is it that you would have wanted to say, have wanted to have done, before this person died, then to help them to do that.”

Family members are encouraged to be with their loved ones at the end. They may visit any time and stay as long as they like. Even after a patient dies, hospice workers keep in touch with the family for at least a year.

Prisoners Brought In

Servicemen have been flown in from all over the world with the help of the Red Cross to say their last goodbys. Prisoners have been brought under escort from jails.

Relatives often take their loved ones out shopping or for dinner, or cook their favorite meals in one of two small pantries just off each of the two patient-family living rooms.

The Connecticut Hospice has 44 beds for inpatients and an adjoining cottage with five beds for the dying who are homeless. Its home care program is even bigger, with between 50 and 70 patients at any one time.

Such care requires a staff of 200 full-time and part-time people plus 300 volunteers and a budget of $10 million a year.

Carol Yoder, director of nursing, says the hospice stresses pain and symptom control, making the patient comfortable.

There are few restrictions on giving patients large enough doses of medicine to kill whatever pain they suffer, or to control the nausea, the vomiting and the anxiety.

“In other settings,” she says, “you’re dealing with how to cure a particular illness. We deal with the symptoms. We’re not trying to cure the illness.”

Shirley Blood, the night nursing supervisor, says hospitals treat cancer with chemotherapy, radiation therapy and surgery. “There comes a time when nothing works anymore and hospitals are not geared to take care of that patient. That patient needs us.”

Treated Like Family

Blood tells her nurses to treat patients like they are members of their own families, like they themselves would like to be treated.

Elizabeth Kingsbury, an 81-year-old artist from Southbury, Conn., got that kind of treatment.

“It’s the people, of course, that make anyplace desirable, and the patient kindliness of the nurses,” she said a few days before she died. “And everyone is so polite and decent, thoughtful and always trying to help.”

From her bed, this gentle, white-haired lady talked with a nurse about resuming her painting in the hospice’s arts program. She complained very little even though she was suffering from lung cancer, emphysema and arthritis.

“Oh, a little pain from my arthritis,” she said, “but they gave me a pill for it and it takes care of it.” What she missed most was not being able to walk. What she had feared most was that she would be a burden to relatives and friends during her last days.

Like many people, she had never heard of hospice. “If people knew there was a possibility they could end their days in a place like this, I think there would be many more relieved old people at peace with themselves to know this kind of an ending is possible.”

Three weeks before Christmas, she died.

One man’s last wish was to fly in a helicopter. Hurzeler, the Connecticut Hospice president, arranged for a pilot from a television station to give the man a ride the next day. But that morning, he started bleeding. The pilot agreed to perform some maneuvers for him.

Returns Salute

The man was wheeled outside still in his hospital bed, his dog snuggled under the covers with him. The pilot rotated the helicopter from side-to-side in a salute. The man’s eyes were open but no one knows for sure if his eyesight was good enough to see the helicopter. They’re sure he heard it. He pulled his hand from under the covers and returned the salute. Five hours later he was dead.

One bedridden woman missed her two pet Alpine goats. They were brought to the hospice to visit her. Even pet snakes have visited their keepers on occasion. One man asked if he could keep his canary at his bedside, but that would have presented potential health problems.

Patients and their families are entertained by musicians in the two living rooms or the commons room used for special events, such as religious services. Strolling harpists, flutists and guitarists serenade the dying at their bedsides.

“We saw that the arts could enable people to mourn, to grieve and to celebrate life,” says Sally Bailey, the arts supervisor. “Music in many respects is a time when patients are reliving memories, other associations, other times in their lives that they might again be mourning because they’re not coming again.”

Sinatra Fan

Marion Knapp, a 69-year-old cancer victim from Kent, Conn., spent her mornings listening to Frank Sinatra on a New York radio station. She was so fond of the singer that hospice workers gave her a cassette player and five Sinatra tapes.

In music, Knapp celebrated life. “When there’s music on my mind, I’m with it,” Knapp said. “Frank Sinatra is my life as far as entertainment. I saw him about a year ago in Hartford.”

Board members call the Connecticut Hospice the “huggin’ and kissingest” place around. Its rooms are filled with light from skylights and windows and the corridors are lined with potted and hanging plants.

“The greatest meaning we all have here is that death is the great equalizer, that we all are going to experience death, that none are spared,” says the Rev. Peter Kuritz, a Lutheran minister who is the pastoral care supervisor. “There’s some mystery of why does that occur and how does that occur. We somewhat work and stand in awe at the threshold, standing in the midst of questions.”