Children dying of cancer experience substantial suffering in the last month of life, according to researchers at two prominent cancer hospitals in Boston. Not all such suffering is necessary, say experts at Harvard-affiliated Dana-Farber Cancer Institute and Childrens Hospital.
The major problem, they believe, stems from the idea that the quality of life of children is secondary to trying to cure them.
“Since caregivers are very committed to curing their patients, it may be difficult for them to recognize when to incorporate palliative care into treatments, even when theres little hope of cure,” notes Joanne Wolfe, an instructor at the Harvard Medical School and lead author of a report, published in todays (Feb. 3) issue of The New England Journal of Medicine.
Wolfe and her colleagues questioned parents of 103 children who died at the hospitals in 1997 and 1998. In answer to queries about the distress their children felt, mothers and fathers said the youngsters suffered “a lot” or “a great deal.” Their suffering came mainly from pain, fatigue, and breathing difficulties.
“We found that treatment (for these problems) was seldom successful, even in the case of symptoms that are typically considered to be amenable to treatment,” Wolfe reports. “Fewer than 30 percent of parents reported that the treatment of pain was successful, and only 10 percent said that nausea and vomiting, or constipation, was controlled.”
Fatigue was the problem most frequently reported by the parents, who said their children suffered a great deal from it. However, “there was little attempt to treat this problem,” Wolfe and her colleagues note.
Causes of such fatigue include progression of the disease, poor appetite, depression, and anemia. Although no effective treatment exists for some of these factors, the researchers say that others may be relieved by proper therapy. “Our data suggest,” Wolfe notes, “there may be a lack of awareness among physicians that suffering caused by certain symptoms typically experienced at the end of life may be amendable to palliation,” or treatment of distressing symptoms rather than the disease itself.
The children were diagnosed with cancer between the ages of 2 and 14. Fifty succumbed to leukemia or lymphoma, 23 to brain tumors, and 30 to other types of tumors. Each year, about 12,400 children are diagnosed with cancer in the United States, and, in 1998, 2,500 of them died of cancer-related causes. The disease is the second leading cause of death in children, after accidents.
Fight the “Good Fight”
The researchers note that aggressive care, such as that received at the two Boston hospitals, can add to agony near the end of life. Nearly half the children died in the hospital, and almost half of these deaths occurred in the intensive care unit. In comparison, another study found that only 25 percent of adults were hospitalized at the time of their death.
The discrepancy leads some experts to conclude that doctors are willing to concentrate on making older patients comfortable at the end of their lives, but they feel compelled to try to save the lives of children. This drive to a cure, they say, may take precedence over a childs quality of life.
“Profound barriers to effective palliation reflect the overall perception of physicians, other care-givers, and families that discontinuing aggressive care means they are giving up and, in effect, represents failure,” comment Elaine Morgan and Sharon Murphy of Childrens Memorial Hospital in Chicago in an editorial in the same issue of the medical journal. “In the United States, the need to fight the good fight is idealized and resistance to giving up is continued even in the face of overwhelming odds. The shift in the goal from achieving a cure to making the patient comfortable usually occurs only when all other options have been exhausted, perpetuating the myth that palliative care is second best.”
The Boston team also found “significant dissonance” between reports of the parents and doctors regarding severity of the childrens symptoms. Thus, the investigators conclude, “suffering may result in part from a lack of recognition of the problem by the medical team. This idea is supported by the finding that parents who said the physician was not actively involved in care at the end of life were more likely to report their child suffered a great deal from pain.”
The researchers maintain that both greater attention to palliative care and more involvement by caregivers can go a long way to alleviating the suffering of dying children. Morgan and Murphy stress that any combination of curative and palliative treatments “should be flexible enough for both children whose disease can be cured and those for whom a cure is not yet possible.”