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December 27, 2002/Tevet 22 5763, Vol. 55, No. 18
Hospice adds dignity to death
BARBARA HILTON
Special to Jewish News
Over the past 25 years, Hospice of the Valley has served more than 45,000 patients and their families. Pictured here, Shelley Russell, LPN, hugs a patient.
Photo by Susan Frank
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A parent's loss of a child is unspeakable horror. But caring people whispering in the darkness can make that pain bearable.
Mace Cohen and his wife, Joy, found such caring people at Hospice of the Valley when their daughter, Tiffany, was dying of organ failure in 1997. Tiffany, 12, had been severely disabled since suffering a reaction to a childhood immunization at age 18 months. As the girl lay dying of digestive problems and pneumonia, she found solace at the Gardiner Home, an in-patient facility operated in Phoenix by Hospice
"This is an impossible thing for parents to do, to prepare for the death of a child," says Cohen, a consultant who helps nonprofit organizations operate thrift shops. The Hospice staff, he says, "makes this possible. It was a terrific experience."
Tiffany was made comfortable and pain free at the Gardiner Home. Hospice of the Valley volunteers visited the girl. One played a harp in her room. Her two brothers saw their sister in pleasant surroundings and swam in the home's backyard pool.
"It was just a warm, comfortable facility," Cohen says. "The people went above and beyond...It's a wonderful organization."
This year Hospice of the Valley celebrates its 25th anniversary, having served more than 45,000 patients and their families. Founding chairman and Presbyterian minister Q. Gerald Roseberry calls that success personally gratifying, but adds, "it took a lot of individual talents and skills no one person had alone...It was sharing the excitement and joy of starting something wonderful."
Twenty-five years ago, few Americans had heard of the nascent hospice movement. It sounded like communism. It sounded like socialized medicine. It sounded suspicious.
But the concept of hospice, which stems from the word hospitality, has its roots in the Middle Ages, says Susan Levine, Hospice of the Valley executive director for the past nine years. When soldiers fell in battle, the only care their comrades could offer was palliative, or comfort, as they died on the field.
Once, most people died in the care of loved ones. But in the years after World War II, when medical technology became a force, the dying more often found themselves languishing in hospitals, Levine says.
Then came Cecily Saunders, a British hospital nurse who, in the mid-1960s, found institutional care of the dying too often chilling. Seeking a more soothing final chapter to life, she earned a degree in social work and then a medical degree and began to speak out.
"The hospice movement started with this one woman," Levine says.
The first hospice program in the country was founded in Branford, Conn., in 1974. That was the year Roseberry answered a call to transfer to a church in Phoenix.
At his former parish in Mount Pleasant, Iowa, Roseberry had seen firsthand how a support group relieved the suffering of a dying parishioner. Then he read an article in Reader's Digest about the Connecticut hospice program. Roseberry gathered people - a social worker, a doctor, a psychiatrist, a nurse - and showed them articles he had collected about that facility.
"I said, 'We can do this if we put our minds to it,' " he told them.
The Valley of the Sun Hospice Association was formed three years later.
To some people, Levine says with a laugh, "It sounded like a communist cell group." Roseberry says the doctor on his committee had to be convinced that hospice did not mean socialized medicine. But the public was eager to embrace the concept of a peaceful death, one that ensured "comforting, life-affirming quality of care," Levine says.
Alongside Roseberry at the birth of Hospice of the Valley were social worker Blanche Hopkins Wenge and nurse Mary-Audrey Mellor. First medical director was Dr. Albert Eckstein, father of Jewish News Contributing Editor Paul F. Eckstein. Mellor jump-started fund raising for the organization, which was operating on a shoestring budget, Roseberry says. Mellor tapped into the resources and generosity of benefactor John Gardiner, who was then owner of the tony John Gardiner's Tennis Ranch on Camelback Mountain. His charity tournaments helped fill Hospice of the Valley's meager bank account.
Federal dollars provided grant money. Donations came in from such groups as the Flinn Foundation. The Rosenzweig family launched a pediatric program with a gift of $20,000.
In 1983, Medicare certified Hospice of the Valley and provided hospice subsidies across the country. Patients and their families pay little or nothing for services.
Word of the hospice concept spread.
"There was a coterie of people that were looking for this," Levine says. Finally, "they had an answer to a human question - how to have a peaceful death...These ideas were percolating all over the country."
Most often, hospice does not mean hospitalization or admittance to an in-patient facility. Much hospice care is in the patient's home. Hospice of the Valley's nine facilities house just 7 percent of its clients. In all, Hospice of the Valley serves more than 1,000 patients a day.
And as the Cohens and others have discovered, hospice is not just for the elderly.
Within a decade, Laura Fabricant lost both her husband, Paul, and her younger son, Greg. Paul died of melanoma in 1992 while under home care provided by Hospice of the Valley. The services he received so impressed Greg that he decided to go into the field of bereavement. He earned a degree in counseling and went to work for Hospice of the Valley.
The good that came from his father's death at 56, he told his mother, was that it "led me to what I want to do the rest of my life."
He would only have a few years to practice his profession. Greg was diagnosed with lung cancer in February 1999 and died in June, just 10 days short of the third anniversary with his wife Charlene.
But once again, Hospice of the Valley was there to relieve a mother's pain. When Greg was admitted to the Gardiner Home to regulate his medicine and receive painkillers, his colleagues from Hospice, often including Levine, visited daily.
"They went all out for him," Fabricant says. "The people who work for Hospice are just caring people...They cater to their patients like they're family."
After three weeks at Gardiner, Greg died peacefully. Fabricant was so impressed with the experience, she intends to become a Hospice of the Valley volunteer.
If she does, she will join a force of 500 volunteers who receive 33 hours of training. Volunteers perform such duties as home visits, fund raising and bereavement counseling. Hospice families are entitled to bereavement follow-up for 13 months after the death of a parent, 25 months after the death of a child.
Hospice of the Valley's other services are wide ranging. Professionals on call include doctors, nurses, social workers and home health aids who provide anywhere from frequent to weekly to daily visits. Those patients nearing death can have 24-hour care.
Schedules are determined by the patient and family. Research shows that terminal patients are most afraid of burdening their loved ones, dying alone and being in pain. Hospice of the Valley, Levine says, can alleviate all those concerns.
The goal, she says, "is to make the final memory of life written by the family and have a good death. And there is a good death."
Ethel Burstein has taken on the difficult task of caring for her extremely ill husband. Without hospice services, she says, she would despair.
"If it wasn't for Hospice of the Valley at the end of a telephone line, their exceptional professionalism, I'd be on my own," says Scottsdale resident Burstein. "They allow this man to be comfortable in his own home."
Albert Burstein, 81, suffers from adrenal insufficiency, a digestive disorder, epilepsy and recurrent small strokes. He has spells of unconsciousness.
He once stayed in a nursing home - for one day.
"It was horrendous," says his wife of 47 years.
Now he's in his own bed, cared for by hospice workers who come at least every five days, more often when needed. They monitor his blood pressure, tend to his digestive problems and rush to the home when he's in crisis, saving a trip to the emergency room.
"These are special people," says Ethel, 76, a retired occupational therapist. "It is a way of caring for a patient with dignity."
For a time, Albert was a resident of the Eckstein Center, an HOV in-patient facility in Scottsdale. Ethel has nothing but praise for the center and its staff.
"There's a warm feeling there," she says. "Jewish people would call it 'hamish.' "
The religious services Hospice of the Valley provides are ecumenical. Non-denominational chaplains visit homes and facilities. Hospice also uses the services of Rabbi Martin Scharf, rabbi and chaplain at the Kivel Campus of Care in Phoenix.
Patients often look to a rabbi to alleviate their fears about death, Scharf says. They sometimes want to know his personal views. He tells them that Judaism believes the soul lives on after death, that there is an afterlife, and that some Jews believe in reincarnation.
"People are looking many times for spiritual comfort," Scharf says. Hospice, he says, "adds a lot of dignity to the end of life. It adds comfort to the family."
Comfort is the key to hospice, Levine says.
Levine, who converted to Judaism in her 20s after being raised without religion, once believed in assisted suicide. No more. She says she has learned that a peaceful death is available through hospice, relying on medicines to relieve pain and anxiety. When the body decides to shut down, it doesn't need to be pushed along, she believes, but shouldn't be forced into an exhaustive fight against death.
Morally and ethically, she says, our hasty society is getting ahead of itself. We live fast and want to die fast.
"We think it is really unfortunate that people believe a peaceful death is not available to them so they seek assisted suicide," Levine says.
"The planning of the last chapter becomes more important as we develop more methods to palliate symptoms and to prolong life...It is not our role to cure, but it is not our role to hasten death."
Levine, married since August to real estate developer Bill Levine, was the second wife of Barry Goldwater. A nurse, she met Goldwater when she was sent to his home to take his blood pressure and was with the feisty Arizona senator the last seven years of his life.
Goldwater, Levine recalls, called death "the final adventure." When she asked him if he was afraid to die, he replied, "I don't think I've ever been afraid of anything in my life."
When he died in May of 1998 at age 89, she says, he was "looking out the window with a sweet smile on his face."
Ellie Shapiro still finds it difficult to discuss the death of her mother, Sadie Bernstein, who died in 1999 at age 95. Disabled by a stroke at breakfast one morning, Bernstein had been a vigorous woman who drove a car and played a mean game of bridge before her eyesight began to fail.
For the last three years of her life, Bernstein lived with Shapiro and her husband, making for joyful times. When the stroke left Bernstein unable to speak or walk and sustained by a feeding tube, Shapiro was devastated. But at the urging of her old friend Susan Levine, she placed her mother in a private room at Kivel where hospice workers cared for her.
"They came every day," Shapiro says. "They had wonderful people."
Hospice eased the pain when Bernstein died in 1999, allowing Shapiro to remember her mother as she had been before the stroke: "She's kind of inside me all the time."
Many Americans aren't so lucky.
"People in the United States aren't dying good deaths," Levine says. They are dying in pain and fear when palliative medications are readily available. "We have a long way to go" before good end of life care is universal.
Hospice of the Valley has just been awarded a $4.5 million federal grant for a pilot program to study long-term hospice care. One hundred randomly selected patients with progressive terminal illnesses will be followed over four years as they plan their final chapter of life.
Research workers will check on those patients regularly, coordinate their care and help them reach their goals for end of life.
"It's a pre-hospice approach," Levine says, "to recognize that life has an endpoint and preparing for it, staying in control with your own last chapter."
Future generations will accept hospice as mainstream, she predicts. The concept will enjoy full acceptance without negative connotations and integrated fully into the health care system. The hospice movement might foster death "coaches" as there are now birthing coaches.
Levine has tender memories of her work over the last nine years - the reconciliation of alienated families, for instance, that Hospice of the Valley has facilitated.
She recalls a young man estranged from his mother until he was dying of complications from AIDS. Hospice of the Valley brought them together for the last three weeks of his life.
"People ask if our work is depressing," Levine says. "It's the opposite. It's most often rewarding."
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