A SCRAGGLY stemmed choir of daisies bloomed in the back yard of a house in Lakewood this year; the flowers were a fitting remembrance of Nena LaLumia. In the spring of 1982, after Nena’s first stay in the hospital, she had carried the plant home and cut the green-faced flowers close to their roots. She replanted the flat-topped perennial in her garden, in a spot where she knew the morning sun would coax it back to life that fall.
On that April day, while she knelt in the grass with her hands in the sandy brown dirt, the spring breezes may have helped Nena feel better, but the news at the hospital had not been good. Her children – all six of them – had learned that the stomach pain their tough old mother complained about was cancer of the pancreas, and it was already overtaking her liver and advancing slowly through the rest of her body. The doctors had explained that this sly brand of cancer is rarely identified through symptoms until the malformed cells have disseminated out of the pancreas and into the lymph system. At that point, the almost certain spreading of the disease could lead quickly to internal bleeding, anorexia, jaundice, back pain and, eventually, delirium.
The cancer couldn’t have chosen a less-befitting victim. At 72, the devout Catholic woman kept the figure and spunk of one much younger, as well as the role of well-loved matriarch, confidant and sus-tainer of all family traditions. Although the LaLumia children were adults with careers ranging from Neiman-Marcus fur manager to underwriter for American Life and Accident, it was their mother who lent them strength when their spirits sank. It was hard for them to imagine that in a few short months she would be dependent on them for every physical need.
But a more pressing concern was the anticipation of days upon days at the hospital with their mother. Nick LaLumia says that the nurses were efficient and kind; they did all they could. “But she was still just one patient on one floor.” After her doctor knew she was dying, Nick says he was harder to catch. “We weren’t neglected by any means,” Angeline LaLumia says; but the family agreed that a hospital is a lonely, cold place to die. “We couldn’t be there with her every minute,” Angeline says. “We couldn’t care for her and cook for her as we pleased.”
So when the doctors said they couldn’t do much more, Nick packed his mother’s things and loaded her into the car. On the way home, they stopped in front of the family church; Nena, too weak to go inside, sat in the car and prayed. Once she settled into her bright front bedroom and was tucked into her own bed beside a nightstand cluttered with her family photos and religious pictures, her prayer book and her rosary, Nick says his mother seemed more alive than she had in weeks. The LaLumias didn’t want to see their mother amid the bright-whites and pale-greens of a hospital again. When a visiting nurse suggested a type of care that was relatively painless and would allow Nena to stay home until her death, the six children met with a social worker to discuss the idea. The philosophy of care that she described is only for the terminally ill and their families; it stresses the importance, she said, of “living until we say goodbye.” The concept is called hospice, and it’s organized on the premise that the most important job when working with a dying patient is the control and relief of emotional and physical suffering.
The LaLumias listened and realized that enlisting their mother in the hospice program meant no more heroics-no more checking into the hospital for every type of surgery, chemotherapy or radiation therapy that had a shadow of a chance of helping her. Hospice meant no more nausea, vomiting, weakness or hair loss frequently brought on by treatments. Rules for participation, the social worker explained, required that the family, along with the patient’s physician, be supportive of the program. The family must be aware, preferably along with the patient, that the physician expects death within six months.
Three of Nena’s children voted no. They thought that hospice would make their mother give up. They didn’t want her to know the gravity of her condition -that death could come at any time and that, unless her disease miraculously reversed, she wouldn’t see another Christmas.
The LaLumias put off the decision for a while, but Nena didn’t get better. “She needed to know,” Angeline says. “She wasn’t stupid; she would see what was happening.” She became a hospice patient June 8, 1982.
THERE ARE at least five hospice programs in operation in the Dallas-Fort Worth area. The LaLumias chose the hospice operated by Home Health Services of Dallas. Like all such services in the region to date, Home Health Services doesn’t provide an actual hospice facility, but a brand of treatment that is delivered in the home or, if necessary, in a hospital. Each hospice has teams of workers who tend to the patients. Depending on a patient’s needs and desires, the teams include a combination of some or all of the following: registered nurses, nutritionists, home health aides, chaplains, volunteers and sometimes physical, occupational or speech therapists. Care is available 24 hours a day, seven days a week; admission in a hospice program is never dependent on ability to pay.
Virginia Major Thomas is the clinical specialist and registered nurse with the Home Health hospice team. She says that during nursing school she was struck by the way that dying patients were ignored: “One day while I was in a ward full of terminally ill patients, I began talking with them, laughing with them. 1 realized that, by golly, dying people are alive. All the malarkey I’d heard about the need to keep death hidden evaporated.”
Thomas calls herself by her nickname (also her maiden name), “Major.” Her office is a tribute to cats -cat jewelry, cat key chains and a poster that proclaims, “Cats love and understand and therefore wait.” Tacked on a bulletin board is a list entitled “Signs of Death.”
Major is the daughter of a physician from the old school – a doctor who practiced in the days before all sorts of machines and vaccines were manufactured to save lives. “My father had to deal with death,” she says, “not as a failure, but as a natural part of life. I saw him work with caring when he knew there couldn’t be curing.”
It’s important to Major that caring be the backbone of the treatment that her patients receive. “It’s never true when a doctor says, ’There’s just nothing more we can do.’ Old-fashioned things like moistening a patient’s mouth or rubbing Vaseline on parched lips can always help. I think it’s important to give the family ideas and suggestions of tasks they can do to make their loved one more comfortable. Then, when that person is gone, they’ll know they did what they could.”
Even after the LaLumias signed up for hospice services for their mother, they felt awkward having strangers “fool with her.” Team members would often call the family and offer their help, but Angeline would refuse them. Gradually, though, as Nena’s condition worsened and the family saw the sincerity of the hospice team, they began to call on the aides and on Major for help. Nena surprised them when she seemed to prefer that the trained nurses and aides handle her. “She knew they knew exactly what they were doing and that we were rank amateurs,” Angeline says. “Team members always treated her with tenderness, and they anticipated needs and wants we’d never even imagined. They answered all her questions and never lied to her.”
At least once, Major wept right along with the LaLumias, Angeline says, and when Major suspected that their mother’s death was near, she offered to stay the night, leaving only after the family had assured her that “together, they’d be fine alone.” That night, September 7, Nena looked fragile under all her bedclothes, but none of her children regretted having her at home in their care. The priest had been there and had prayed with the family. They knew their mother was where she wanted to be -in the house where she had raised her family, with her children and grandchildren close at hand. Angeline set an alarm to ring every hour on the hour so she could check on her mother. Then she fell asleep beside the bed, holding her mother’s hand.
Nena died at a little past 3 o’clock the next morning. Her children say she died with a faint smile on her lips. Nick says that her death is not something he wants to forget. The LaLumias all had time alone with their mother that night, and the family felt very close in the privacy of their home. “My mother had a beautiful death,” Nick says. “It wasn’t easy for us to see it happen, but we wouldn’t have wanted it any other way.”
The police came after Nena died, just as they must always come when a death occurs at home. But because of arrangements made by hospice team members, the call was handled quietly. The family knew what to expect and exactly what information the officers would need to file their report.
AS WITH any hospice death, Home Health Services team workers made an effort during the next weeks and months to stay in contact with the LaLumias. Most hospices offer bereavement classes or counseling afterward (it’s been proved that those who lose a family member or companion are more prone to accidents, illnesses and injury for a while). People who have lost a relative say that when they’re with friends, death becomes a taboo subject; well-meaning associates slap them on the back and tell them to put it behind them and get on with their lives. But Thomas says that this philosophy doesn’t work as a coping mechanism: “You can’t just forget a big hole in your life.” For that reason, many families welcome bereavement visits from the hospice teams. In addition to serving as a dose of preventive medicine, the time is spent with the same team members who the family has often come to feel very close to over the past months. Usually, they feel relaxed after talking about the loss they’ve experienced or the feelings of guilt that often accompany the simple relief that the ordeal is finally over.
Fury and resentment toward death might be added to one family’s grief, while another widow might meet her husband’s death with tremendous peace and acceptance. But regardless of how the family reacts, a hospice team remains close to the action. To hear some families talk, the aides, social workers and nurses who visit daily are angels from on high. If those angels aren’t in the thick of caring, they aren’t doing their jobs.
DALLAS’ VISITING Nurse Association (VNA) Home Hospice Program employs Gene Swenson as a psychological consultant to help its staff members keep the care they give in perspective. “Most of us have time to recuperate between traumas, but some hospice nurses have experienced three patient deaths in one day,” Swenson says. He speaks in terms of “filling buckets”-of helping team members “recharge” after patient deaths. “Hospice nurses and care givers aren’t nursing back to health, as most were originally trained to do, but nursing to death. This line of work puts a person dramatically in touch with his own mortality.”
And awareness of mortality, a keen sensation of the nearness of death, is a consciousness not easily left at the office. The friends and families of hospice workers soon tire of the subject, and pent-up emotions aren’t healthy for anyone, Swenson points out, so the support of co-workers is essential. VNA Home Hospice team workers meet once a week at their office on Maple for a three-hour smorgasbord session of old and new business, problem solving, gut-wrenching stories about difficult patients and heartbreaking stories about hard-to-understand deaths.
The staff meetings at VNA help the team members fuel themselves emotionally for their work, but none of the nurses, aides or administrators can ensure that every patient experiences what hospice workers like to call a “good death.”
Registered nurse Joyce Hopkins says that patients are never taught to give up: “We never tell them to stop hoping, but sometimes we try to help them change what they hope for. We’ve learned that there are some things worse than death; I believe there’s a theological basis for dying being the ultimate cure.”
Cindy Geddes and Margie Hoffmann, hospice workers for Fort Worth’s Family Services Inc., say the work they do “makes our lives fuller, more thankful than they would be otherwise. Our patients have taught us how to accept death.”
Hopkins tells the story of a wife who couldn’t even mention her husband’s impending death. “When I knew it’d be soon, I asked if she’d told him goodbye. Finally she did; he died shortly thereafter. The house was filled with love and peace, though everybody was tearful. It’s a miracle to see a family survive like that – from time to time you hear the brush of angels’ wings. There’s no other job like this.”
Hospice care is still relatively new in this country, but inpatient hospices have long been popular in Europe, the most famous being St. Christopher’s Hospice in Britain. The movement has grown quickly in the United States during recent years as the federal government has stepped in to provide financial assistance. Since hospice philosophy provides that care be offered on the basis of need and not on ability to pay, public and private funding is essential to sustain the programs. As laws now stand, the federal government reimburses hospices for Medicare patients’ care. Insurance policies (in some agencies) and United Way funding do the rest.
Federally set reimbursement levels for Medicare hospice patients have caused big problems between Secretary for the Department of Health and Human Services Margaret Heckler and hospice proponents. The sore spots have been the standards of patient care and the current cost of traditional health care for a terminally ill Medicare patient during the last six months of his life.
An editorial in the June issue of Modern Healthcare expressed the fears of hospice supporters: “If hospices can’t afford to care for sicker terminally ill patients in their last six months, they’ll have to be cared for by hospitals. Government’s costs will be doubled or tripled. Containing the federal deficit by keeping the terminally ill in expensive hospitals when they can be cared for much more economically and comfortably in hospices defies logic.”
Others are wary of the care itself. Hospice is the worst possible alternative for some cancer patients, as one radiologist warned: “There’s nothing more undignified than a premature dignified death.”
Dr. Albert E. Gunn, medical director of the rehabilitation center at Houston’s M.D.Anderson Hospital and associate professor of medicine at the University of Texas Health Sciences Center at Houston, says that “by and large” he’s in sympathy with the hospice movement. But Gunn warns that there are dangers if the care is improperly handled: “In the current economic climate, hospice care might be used as a cost-cutting mechanism. Some cancer patients might be forced to go to hospices for less expensive care when maybe they’d prefer more medical intervention. I think it is very cruel and disheartening to tell people they are dying; it often destroys the remaining life they have; and while direct statements of prognosis are good for some, for others they definitely are not. Medical practice is littered with stories of people who were going to die in three weeks and instead lived five years. For that reason, I think it is never appropriate to set limits on a person’s life. Hospice is only appropriate when no other treatments are available or a patient chooses not to seek more medical help.”
Dr. Dale Fuller, who serves on the VNA Home Hospice advisory board, stresses that patients are not encouraged to give up. “I resist putting finite numbers on life expectancy. I can only tell them in general terms what course their cancer may take. The average time from referral to death is 30 days.’”
In her book The Hospice Movement, Sandol Stoddard explains when the time is right for hospice: “When the patient’s body has become merely an object, a public commodity and a pawn in our irrational war against death, then it is time to call a halt to such procedures.”
TOBITHA Dickerson, a tiny, 83-year-old woman with malignant melanoma is curled up in her bright-yellow room with a pink-and-white pillow with “Grandma” stitched on it. “I don’t know what in the world we would have done without hospice,” she says. “1 didn’t want anymore surgery. I knew it wouldn’t help long, and I just wanted to come home.”
Tobitha died June 30 at 2:02 p.m. It was what hospice workers like to see: “a good death.”
THESE AGENCIES can provide more information about hospice services in the Dallas/Fort Worth area:
Ann’s Haven, P.O. Box 856, Denton, 76201. (817) 556-3387.
Family and Individual Services, 716 W. Magnolia, Fort Worth, 76104. (817) 335-2401.
Home Health Services, 5019 McKinney, Suite 230, Dallas, 75205. 559-4050.
St. Joseph’s Hospice, 1401 S. Main, Fort Worth, 76104. (817) 336-9371.
VNA Home Hospice Program, 2818Maple, Dallas, 75202. 741-6400.
