In a peaceful room in a hospice ward in Albany, N.Y., Mary Guasconi, 85, is lying motionless, eyes closed, her soft white hair lovingly brushed into gentle drifts on her pillow. While an oxygen machine gently pumps air into her lungs through a tube inserted in her throat, her daughter Julie Guasconi, 55, adjusts a beautiful afghan across her body. “She made it for me,” Julie explains, fingering it lightly. “Now I’m giving it back to her.”
Since her admission into hospice some days before for advanced cancer, Mary Guasconi has drifted into and out of a state of semiconsciousness. But there are rare and precious signs of awareness. Once in a while she makes a gesture that her daughter believes is a request for a kiss. When a telephone receiver was placed next to her ear so that she could listen to her granddaughter in California play the piano, she broke into a radiant smile.
And when her daughter speculated quietly to a friend that perhaps it was time for her mother to “let go,” Mary scrunched her face into a vehement scowl.
“She was telling us she wasn’t ready yet,” Julie Guasconi says with a smile.
If there is such a thing as a good death, surely this is it, in a clean and quiet room, surrounded by flowers and family photographs and cared for by a loving daughter who herself is supported by a vigilant and caring staff.
Unfortunately, it is a death too often denied to the terminally ill. More than a quarter of century after the first center for hospice care opened in the United States in 1974, only about 25 percent of dying patients end their days in hospice. And of those who do enter hospice, too many are entering too late to reap the full benefits of hospice care, pain relief, symptom management, grief counseling and family support.
The reasons for this are complex, ranging from reluctance both on the part of physicians and patients to admit that the end is near, and from persistent misconceptions about what hospice is and what it does.
For instance, contrary to popular impressions, hospice is not simply a place, but rather a philosophy of caregiving in which the emphasis shifts away from fighting disease and prolonging life to improving quality of life in the time remaining. Hospice care can be provided in a hospital ward, a nursing home, an assisted-living facility or at home. Indeed, around 75 to 80 percent of hospice patients are cared for and die at home.
Another common misconception is that patients must be at death’s door to enter hospice care. Although it is true that patients must sign a paper acknowledging that certain aggressive treatments, such as radiation, chemotherapy and major surgery, will no longer be available to them, and that a physician must certify that a patient is likely to die within six months, some patients improve under hospice care and return to traditional aggressive treatment, says Dr. George Davis, medical director of The Community Hospice, a nonprofit network of hospice programs in New York State.
Patients always have the option to change their minds about hospice care; Davis believes that good palliative care — care that focuses on pain relief and quality of life — can extend life.
Most of all, hospice care is much more than simply providing adequate pain medication as the end of life approaches. Instead, in good hospice care, an interdisciplinary team of doctors, nurses, social workers, volunteers and clergy strive to provide the kind of total care — physical, spiritual and practical– that patients and their families need to carve out a stretch of time that is as painless and stress-free as possible so that they are able to cherish and enjoy their remaining time together.
On a sunny morning in March, the team members of the Hospice Inn of St. Peter’s Hospital, a branch of the Community Hospice, are meeting in the office of Greek Orthodox priest, Father Anthony Nicklas. The Hospice Inn is one of the oldest hospices in the United States, established in 1978, at a time when the concept of hospice was still frightening to many. Ironically, Julie Guasconi was one of the first hospice nurses to work in the Inn. She remembers being shunned by other hospital nurses who felt that hospice workers were giving up on their patients and letting them die.
Molly Poleto, then an oncology nurse at St. Peter’s, understood the feelings of the regular staff nurses but also knew that there was a need for a different approach to the care of the dying.
“I would have just 15 minutes to spend with each patient,” recalled Poleto, now a public relations specialist for the Community Hospice. “And I felt I was shooing them out of my office just when they started to ask the questions that were really important to them.”
There’s no sense of rush during today’s team meeting. As a candle burns peacefully beneath an icon of the Virgin Mary on Nicklas’ desk, the patient-care coordinator, Mary Grace Cahill, reviews each patient’s records: the date of admission, the diagnosis, the symptoms and the current medication.
A round robin ensues: A nurse reports any unusual symptoms. Is the patient grimacing or showing other signs of distress that might indicate a need for better pain medication? If he or she is too lethargic to recognize visitors, perhaps a change of medication might help. Can treatment help a fever or rash that is making the patient uncomfortable?
A social worker outlines the patient’s support network. Who visits the patient, and what is their relationship to the patient; who seems to be the primary caretaker? Critically, what kind of support does the primary caretaker have and can he or she benefit from volunteer help with shopping, transportation or child care?
Nicklas reports on his conversations with the patient. Is the patient content, resigned, drawing strength from religious beliefs, or depressed or anxious? Is there a spiritual adviser — a priest, minister or rabbi — attending to a patient with religious convictions? How is the family holding up?
With a sensitivity honed by 20 years as a parish priest, Nicklas is careful to take note of “things that are not necessarily said.”
For instance, he describes how the husband of one patient who was about to leave the hospital to go on home care told him that the patient sometimes got very frightened in the middle of the night.
“I think he’s asking us for help in dealing with the mood swings,” says Nicklas. A psychiatrist suggests the possible use of anti-anxiety mediation for the patient, and the team discusses the best way to approach the patient about it.
The focus is less on medical issues than on the whole patient and the family’s physical, emotional and spiritual welfare. What do they want for the patient’s remaining time? What are the things that will improve a patient’s quality of life?
For “Tom,” (he asked that his real name not be used) 75, one essential ingredient is the oxygen that is pumped through a tube in his nose to his cancer-ravaged lungs. Before he entered hospice, his doctor, perhaps fearing oxygen dependency, had limited his oxygen to 10 minutes an hour. “What the doctor didn’t understand,” said Tom, “is that when I don’t have the oxygen, I can’t talk.”
Minutes after sitting down in Tom’s cozily cluttered apartment in Schenectady, N.Y., a visitor realizes how important the cancer patient’s ability to talk freely is to the retired driver. Tom and his 75-year-old wife, “Ethel,” are born storytellers who regale company with charming anecdotes about their life together, delivered with the practiced rhythm of a George Burns and Gracie Allen routine. Since entering hospice care, Tom has been given unrestricted oxygen, and now, with the air pump hissing quietly in the background, he is able to say other words that, as time grows short, need to be said. “This wonderful woman,” he says of his wife of 52 years, “takes good care of me. Anything I want, I’ve got it.”
Members of a team of some nine hospice workers visit the couple regularly to ensure that this continues to be the case. One volunteer, a beautician, stops in to give Tom haircuts. When one of Schenectady’s legendary winter blizzards threatened, another hospice worker dropped by to make sure the couple had enough food and medicine and gave them a sign with the word “HELP” printed out in big black letters. This was to be put in the window should the telephone lines go out and a medical emergency occur. “They think ahead,” said Tom, approvingly.
Hospice care means that the wishes of the individual and his family are respected, even when it goes against the established wisdom. Although many terminally ill patients take comfort in discussing their impending death and making plans for their funeral arrangements, Tom refuses to discuss these issues with his hospice chaplain. “I’ve told my wife and I’ve told my daughter what I want done and how I want it done and I’ve told him I’m not going to talk about it anymore,” said Tom. Respecting this wish, the hospice chaplain spends his visits to the home watching television and occasionally sharing a meal with the sociable couple.
Learning to yield to the wishes of the patient and family can be hard for a medical professional schooled in the “Doctor knows best” mode of treatment, says Davis.
“I have this home-care patient who I think could use more pain medication, but her daughter doesn’t want it,” Davis says. “She’s had some bad experiences with medical professionals before.
“I’m just going to have to wait,” he says. “I’m just going to have to take the time until I build up some trust.”
FEW TAKE ADVANTAGE OF WHAT HOSPICE CAN OFFER
Despite the fact that Medicare and most insurance companies pay for hospice care, only about one quarter of dying patients take advantage of this, said Steven Connor, vice president of the National Hospice and Palliative Care Organization. Even after allowing for the 30 percent of deaths that occur suddenly or unpredictably, due to accidents, homicides or sudden illness, there remains another 45 percent of dying patients who could benefit from coordinated end-of-life care.
Of those who do receive hospice care, too many are coming in too late to take advantage of the full benefits. Hospice professionals believe that about three months of end-of-life care are optimal, allowing patients time to adjust to the new medical regime, establish physical comfort and achieve some measure of reconciliation or peace. But in 1995, the median length of stay in hospice care was 29 days, and by 1998, this had dropped to 25 days.
Because Medicare and most insurance plans pay for hospice — at a cost of only around $100 per day — why are there so few takers?
One obstacle is the reluctance of the primary physician to refer patients to hospice care. In order for a patient to be admitted into hospice care, a physician must certify that the patient is unlikely to live more than six months. This is an admission many physicians resist making.
“I think physicians are the kinds of people who want to save lives,” said Robert O’Connor, vice president of marketing and communications for the national hospice organization. “It goes very much against the grain to counsel people to start talking about death.”
Another factor is the changing population of hospice patients. In the 1970s and 1980s, the vast majority of patients in hospice were cancer patients. Cancer, Connor explained, has a more predictable trajectory than other chronic diseases and it is somewhat easier to predict the onset of death. Today, more people with other chronic illnesses, such as heart disease, emphysema, AIDS and Alzheimer’s disease are entering, and these diseases have a less predictable course. Patients are often not referred to hospice until they suffer the sudden, precipitous decline that often precedes death.
Doctors aren’t the only ones who resist the inevitability of death.
Naturally, patients and their families are often reluctant to admit that the end of life is approaching. Nonetheless, Medicare requires that in order to enter hospice, patients must sign a statement indicating, in essence, that they agree to forego curative treatment in favor of palliative care. To many patients, this translates into giving up hope, and they put off entering hospice until the very end.
Dorothy Rothberg, a 73-year-old retired teacher from New York, entered hospice care only one week before her death from liver cancer. Her daughter, Janet Starr, has bitter memories of her mother’s final week, as she coped not only with the imminent death of her mother, and her mother’s grief and despair as well as her own, but also the bureaucratic snafus and medication mixups resulting from her mother’s rapid transfer to hospice care.
“The people were all very nice, asking, `Can we do this for you? Can we do that for you?’ ” Starr, a 48-year-old artist, said. “But I could have used all this help for the two months before she died.”
Dr. Cameron Muir, director of the Palliative Care and Home Hospice Program at Northwestern Memorial Hospital, believes that situations like this could be avoided if all patients with serious illnesses were given at least some palliative and interdisciplinary care even while continuing to receive curative treatments such as radiation, surgery and chemotherapy.
However, he said, compared to countries like Canada and the United Kingdom, palliative care in the United States is “woefully inadequate.”
“In 1997, the Supreme Court ruled that while patients did not have the right to assisted suicide, they did have the right to good palliative care,” he said. “But there are only seven medical schools offering training programs in palliative care in the whole country, turning out only five or six specialists a year.”
It is vital that a national discussion be opened now, said Joanne Lynn, president of the Center to Improve Care of the Dying in Washington, D.C., and author of “Handbook for Mortals,” a book offering advice to the dying and seriously ill and their families. With the Baby Boomers rapidly aging, the ranks of the seriously ill are expected to double and triple in the next few decades, she said.
Until a better system is in place, Lynn advises patients and their families to be practical, flexible and noisy. “Put the patient in hospice if you can get him in,” she said. “Pull him out if he gets better. Get in touch with hospital and community social workers, organizations, churches and community groups and see what kind of help is out there. If you get annoyed, make yourself a note to call and raise heck.
“Don’t feel bad if you feel like you’re not managing things well,” she said. “Medicare was designed for a broken leg. It wasn’t designed for an 87-year-old lady with cancer. It’s like going to the auto parts store and trying to build yourself a car.”
For more information, contact the National Hospice and Palliative Care Organization, 1-703-243-5900, Fax: 1-703-525-5762, Web site: www.nho.org.
