Emphasis on Comfort, Not Cure : Hospices Hope to Provide a ‘House of Rest’ for the Dying

Eight people were standing around Betty Doebel’s bed, trying to figure out how to move her to a stretcher without breaking any bones.

The hospice team had been anxiously rehearsing this moment for weeks, ever since Doebel had decided that she wanted to go back home to the Pennsylvania hills to die.

Inoperable cancer had spread throughout her body, including her skeleton. Her bones were so brittle with cancer that one day last August, as the nurses were turning her in bed, her left thigh bone crumbled. The leg was now in traction, a 10-pound sandbag dangling from the foot of her bed to hold the bone fragments more or less in place and keep them from rubbing against each other. The slightest pressure on her leg was excruciating.

Near Childhood Home

And now the hospice team was about to try to transfer her to a stretcher and into an ambulance for a 127-mile drive to a Bedford, Pa., hospital near her childhood home.

No one knew exactly how much time Doebel had left, but it wasn’t likely more than a few months. At 54, after nearly 30 years in the Washington area, what she wanted most was to move back home.

“She said she wanted to go back to the farm and look out the window at the mountains,” said her husband, Leo. “OK, lady, whatever you want.”

Doebel knew the risk. She had been warned that she might not survive the journey. The motion and stress could dislodge a potentially fatal blood clot or throw her blood calcium out of whack. Sheer pain could send her into shock.

“I’m facing the unknown,” she said. “I don’t know what’s going to happen.”

“We’ll just get a whole bunch of people and all pull together, and pray,” said Leo Doebel, pacing outside her room.

Side-Lift Gingerly

While Betty Doebel closed her eyes and tried to forget what was happening, the team of eight fashioned her bed sheet into a kind of hammock and slide-lifted her ever so gingerly onto the blue foam “egg-carton” mattress on the stretcher alongside her bed.

It worked. A cheer--more relief than exultation--rose from around the room. Doebel opened her eyes, smiled, closed them again.

They wheeled her down the hall, interrupted by farewells from the hospice staff and other patients, and out into the sunshine. Two ambulance attendants lifted the stretcher into the back of the van.

Eyes shut against the glare and pain and fear of pain, Doebel lay motionless on a kind of nest, her stretcher and foam mattress buttressed by sandbags. Her stuffed white rabbit, Snuggles, rested by her left shoulder, and an automatic pump the size of a cigarette pack fed continuous morphine directly into her bloodstream through a tube in her chest.

Doebel’s hospice nurse, Norah David, climbed into the back of the ambulance. It was her day off, but missing this trip was unthinkable. She made sure that they had everything: X-rays, medicines, six extra pillows, apple juice, crackers, lollipops, a trash bag. The ambulance pulled out, Leo following in the family Ford.

On a beautiful bittersweet fall day, Betty Doebel was going home.

The term “hospice” derives from a medieval word for a wayside shelter for travelers on difficult journeys. The Oxford English Dictionary defines it as “a house of rest” for pilgrims, travelers, the destitute or the sick.

The word has come to mean a place or way of caring for the terminally ill and their families. Modern-day hospices are modeled on St. Christopher’s in London, founded in 1967.

Hospices do not use extraordinary medical means--such as blood transfusions or an artificial respirator--to treat a dying patient when prolonging life would merely prolong the patient’s death. When death occurs, there is no attempt to revive the patient.

The first hospice in the United States, Connecticut Hospice Inc. in New Haven, was founded in 1974. Now there are an estimated 1,500 hospice programs around the country in various stages of development, including about 1,000 already open. More than 100,000 Americans received hospice care last year, according to the National Consumers League.

Hospice of Northern Virginia, Betty Doebel’s way station on her journey home, was founded in 1977 and is the largest of nearly a dozen hospices in the Washington area.

Some Provide Home Care

Some hospices are based within hospitals; others exclusively offer home care through a visiting-nurse service. Still others, like Hospice of Northern Virginia, are free-standing programs that provide both home care and inpatient care.

What they share is a commitment to viewing death as an integral part of life and to improving care of dying patients for whom medical cure is no longer a realistic possibility.

Hospices are not for everyone, and they have no monopoly on compassionate care of the gravely ill. They are intended to supplement conventional hospital care, not to supplant it.

More than a place, a hospice is an approach to care that, whenever possible, takes place in the home. It is a team effort, beginning with the patients themselves and their families. The care team also includes nurses, doctors, social workers, clergy, dietitians, bereavement counselors and volunteers.

A hospice, says the National Hospice Organization, is “a program of palliative and supportive services which provides physical, psychological, social and spiritual care for dying persons and their families.”

The emphasis is on relief rather than resuscitation, comfort rather than cure. Day-to-day nursing care in a hospice consists of trying to control and relieve symptoms such as pain, nausea, incontinence, fever, bedsores, itching and shortness of breath.

What hospice is not about is euthanasia, or so-called mercy killing.

“Hospice affirms life,” the NHO’s national standards state. “Hospice neither hastens nor postpones death.”

“Yes, we’re working with people who are dying,” says Nell Worrall, who retired last year as assistant administrator of Hospice of Northern Virginia. “But we’re helping them live.”

After the ambulance crossed the border into Pennsylvania, Norah David, Betty Doebel’s nurse, would call out the names of towns they passed, so Doebel knew exactly where she was.

About 30 minutes outside of Bedford, in preparation for the transfer back to a hospital bed, David raised the intravenous dose of morphine from the automatic pump and gave Doebel two extra tablets of morphine under the tongue.

Again it took a crowd of attendants to lift her from one bed to another without breaking any of her brittle bones. As she had that morning, Doebel kept her eyes closed, did her breathing exercises and tried to visualize pleasant places to distract herself from the pain. She imagined mountains, or a brook.

“The day they put her in traction,” recalls David, “Betty and I ‘went’ to the mountains and sat in front of the fireplace. I gave her a strawberry margarita, and we played gin.”

A family’s first contact with Hospice of Northern Virginia is often a telephone conversation with either Jo Turner or Mary Eileen Ness, whose desks face each other in the admissions office.

Like many of their colleagues, they came to the hospice out of personal experience. Ness’ home was a kind of hospice before she had ever been to one. Her 6-year-old son Jason died of leukemia in 1983, after 11 months of home care, interrupted by hospital stays.

“I was hospice material, I guess,” says Ness, who joined Hospice of Northern Virginia as a volunteer after Jason died at home and now is assistant admissions director.

Turner in recent years has watched her mother and only brother face cancer. All four of her grandparents and her father died of cancer, and Turner saw how they were cared for, the good and the bad, and how they died. Four years ago she decided to go to work at the hospice.

“Making friends with cancer is probably not a good way to put it,” she says, “but it’s something like that.”

Turner and Ness see their job as one of trying to keep often-desperate people from falling through the cracks. It’s not the ones you admit, Turner’s predecessor told her when she took the job, it’s the ones you can’t help that will drive you crazy.

“I was very naive,” Turner says. “I always thought that when there was a death in the family, the family would rally around and pull together and sing ‘Blest Be the Ties That Bind’ or something.”

Now she knows how rare that is: “The drinkers will drink more. The drug abusers will abuse, and all the anger comes out. All the problems are accentuated.”

A man calls. His aunt is dying of cancer. In a calm, deliberate voice, Turner explains to him that patients admitted to the hospice program must have a life expectancy of six months or less and must have exhausted the possibilities of curative medical treatment. She outlines home-care services, insurance coverage, Medicare rules. There are long pauses while she lets the man talk.

Help Keep Control

“People are sometimes afraid that hospice means giving up,” she said. “We try to tell people that we’ll help them keep as much control as possible. Hospice doesn’t mean giving up hope, it means hope for the best life possible in the time that’s left.”

Still, it’s never an easy decision for either patient or family.

“Are you a little bit nervous about thinking about doing this?” she asks the caller. She listens to his answer. “Uh-huh,” she says. “It’s good to have that feeling.”

More than one of every three northern Virginia residents who died of cancer last year received hospice care.

In all, about 650 patients and their families were cared for last year through the Hospice of Northern Virginia. Nearly 600 died, about half of them at home and half in the 15-bed hospice inpatient unit in a renovated elementary school in Arlington.

The average stay in the hospice program is about 45 days for home-care patients and 11 days in the inpatient unit.

The overwhelming majority of hospice patients--nearly 90%--have cancer. The rest have other incurable or degenerative illnesses, including AIDS (acquired immune deficiency syndrome), chronic obstructive lung disease, amyotrophic lateral sclerosis or Parkinson’s disease.

At Hospice of Northern Virginia, patients have ranged in age from 2 weeks to 102 years.

Familiar Atmosphere

The core of the hospice is a home-care program, or “hospice without walls.” Whenever possible, hospice patients stay in the familiar atmosphere of home, with family members providing as much of the care as possible, helped by nursing visits as needed.

For patients who can no longer be cared for at home, a short-stay inpatient unit with round-the-clock nursing care opened in 1982 on the second floor of what used to be a school. On the outside, it retains the look of a brick school building. Inside, the 15-bed unit looks more like a spacious home than an intensive-care unit.

“It doesn’t look like a hospital, it doesn’t smell like a hospital, it doesn’t feel like a hospital,” says Thelma (Pete) Reed, visiting her husband, Jay Reed, 83, who has congestive heart failure and chronic lung disease. They sat in the carpeted hallway of the inpatient unit. She stroked his arm as he sipped a vanilla milkshake.

Even Pets Welcome

The rooms--three quadruples and three singles--have hardwood floors, high windows and flowered wallpaper. There are paintings on the walls, potted plants everywhere. Down the hall is a carpeted family lounge, with a fireplace, a piano, stuffed chairs, two large sofas, bookcases and a stereo. There is a library, a meditation room, a kitchenette, a garden.

The hospice has no visiting hours. Guests, including children and even family pets, are welcome anytime. One patient’s poodles used to visit him every day, curling up on the foot of his bed.

Mealtimes aren’t rigidly scheduled; if a patient wants a dish of chocolate ice cream in the middle of the night, the patient usually gets it. Around 5 o’clock most afternoons recently, when he was in the inpatient unit with incurable lung disease, Wesley Smiler, 61, fixed himself a bedside bloody Mary.

Each of the hospice teams--home care and inpatient--gathers twice a week in the library, lugging thick green loose-leaf binders containing patient records. The teams go over every patient, one by one, discussing progress, problems, what can be done.

There are no easy cases.

A 32-year-old woman, divorced with three children, is dying of breast cancer six months after she nursed her mother to her death from ALS--Lou Gehrig’s disease. A 30-year-old woman with multiple cancer has a 3-year-old child and a husband who is an alcoholic and steals her drugs.

The discussion is by turns emotional and mundane. There are triumphs (“Bill’s going home tomorrow!”) among the talk of dressing changes, bowel movements, narcotic drug doses.

Small questions loom large. A 77-year-old man wishes to see his dog before he dies. A woman with just days left requests a trapeze over her bed so she can keep doing her exercises. Someone else wants to take communion every day. A young woman in the final stages of breast cancer refuses to take oral medication, juice or even water because she’s afraid it’s a “trick” to keep her alive beyond her time.

A man dying of AIDS wants an ice cream cake for his birthday, but he may not survive until then. Should the staff surprise him with an early party, or will that only frighten him more?

There are as many ways of dying as of living, say people who work at the hospice. Some deaths are hellish, some serene.

“With hospice, you’re choosing to die your way,” says Peggy Beckman, a nurse and home-care-team director. “There is no right or wrong way. We’re here to support you in that.”

Always, Beckman says, facing death is a learning experience. She remembers a patient obviously near death but “so heavily into denial that I finally had to tell him, ‘You’re very, very sick. You won’t live much longer.’

“He looked at me and said, ‘You shouldn’t have told me that.’ ”

In retrospect, she says, the man was right. But it was his most alert moment in the previous three weeks. Until then, he hadn’t said a word to anybody.

Almost as if to spite her, the man stayed alive for another two weeks, uncommunicative as ever.

The morning he died, she was sitting on the edge of his bed. The man was semiconscious. She took his hand, and, to her amazement, he grasped hers in return.

“That was such a significant thing for him to do--this man who had never been able to reach out to anyone. As he was dying, he learned something. I knew.”

After a week at home, Ilda Farquhar came back to the hospice inpatient unit on a recent Monday afternoon, her blood pressure falling and her kidneys shutting down. The pressure of the huge tumor spreading from her lung made it hard for her to breathe, and the nurses didn’t expect her to survive the night.

She did.

And now, she was sitting up in bed, sipping apple juice through a bent straw and smiling at the family at her bedside--her son Calvin, her daughter Erika and son-in-law Buddy Ellyett. They had been up all night with her, praying, singing hymns, keeping watch. After a frightful night, she seemed more at peace with her dying.

Even with the oxygen line under her nose, her breathing came in frequent, shallow gasps.

“Hey good lookin’,” said Buddy, leaning over the bed.

“Got somethin’ cookin’,” she answered in a hoarse, dry whisper.

Her children laughed. Erika stroked Ilda’s right hand and touched a finger to her lips. Calvin bathed her face with a rolled-up washcloth. Buddy brushed the hair out of her eyes.

“Going to heaven?” Buddy asked her.

“West Virginia,” Ilda answered. Hours from death, she had not lost her wit or humor.

The last Wednesday of every month, in the hospice lounge, Chaplain Jeanne Brenneis holds a nondenominational memorial service for the patients who have died in the previous month.

It’s a simple service, informal and brief, open to anyone who wants to attend: nurses, other staff members, families, patients.

“We have so many deaths in a month that we need time to remember these people as individuals,” Brenneis says. “This is a way to remember that these people didn’t just pass--they meant something to us.”

They remembered Tom, an AIDS patient who earlier in the summer watched a friend die of AIDS at the hospice, and who died at home, with as many care-givers as any patient his nurse had seen.

And Ilda Farquhar, who died in the wee hours of Sept. 10, with her children surrounding the bed, praying and singing hymns.

Got Support From Family

“That’s my conception of what hospice is,” said Karen Price, who became director of inpatient care just before Ilda Farquhar entered the hospice. “She was here and got a little better and went home and then came back just before she died. It was nice to see her with her family and the support she got from them. She had some good times with them.”

Brenneis played a recording of “On Eagles’ Wings,” and said another prayer.

“We pray for the people we have cried with, and some we have fought with--for the people we have tried to help, and some we couldn’t help as much as we wanted to.”

For the patients, she prayed for “rest and sleep when they need it and freedom from pain.”

And for the hospice staff: “Help us remember, especially when we’re tired or angry or sad, or think perhaps we shouldn’t be in this line of work at all, to keep compassion in our hearts and tenderness in our hands.”

Not only is hospice care a welcome alternative to hospitalization for many families, but studies suggest that it can save money. The key to the savings is keeping people out of the hospital.

A pilot hospice program for more than 1,000 cancer patients saved Blue Cross and Blue Shield of the National Capital Area an estimated $225,000 in 1982. In the last 30 days of life, the hospice patients incurred average costs of $1,678 less than comparable patients who got conventional care.

The savings under hospice care are greatest when patients are cared for at home. A nationwide study of 26 hospices found that over the last year of a patient’s life, hospital-based hospices saved $585 per patient and home-based hospices saved $2,221 per patient, compared to usual care.

In a study last year by Blue Cross and Blue Shield of Maine, the cost of hospice care averaged $52.77 per day at home and $182.99 per inpatient day, compared to an average daily hospital charge of nearly $600.

Sixty-five of the 78 Blue Cross-Blue Shield plans in the nation cover hospice care, but coverage varies from plan to plan.

Benefits ‘Incredibly Limited’

Though the trend among insurance companies is toward greater coverage of hospice care, says Dale Lupu, assistant administrator of Hospice of Northern Virginia, benefits vary from “incredibly limited” to “open-ended.”

Medicare began covering hospice care in 1983 and now reimburses hospices for most kinds of care offered, including drugs, for up to 210 days. But Lupu says the reimbursement rates--about $69 a day for home care and $309 for inpatient care at Hospice of Northern Virginia--aren’t high enough to cover hospice costs.

The hospice loses an average of $1,400 on every Medicare patient cared for, she said. Sixty percent of the hospice’s patients are covered by Medicare.

For information about hospices in general, or specific programs, write or call the National Hospice Organization, 1901 N. Fort Myer Drive, Suite 307, Arlington, Va. 22209.