Kids with terminal cancer need better palliative care
Kids with terminal cancer need better palliative care
Pressed by demands from within the industry and from consumers, health care systems are improving end-of-life care.
However, a particularly vulnerable group of dying patients is often left out of the picture, according to a recent study. Only 27% of the parents whose children died of cancer between 1990 and 1997 say the pain treatment their children received was successful. Of those treated for dyspnea (shortness of breath), 16% report success. The results were compiled from 103 interviews of parents whose children were treated at Children’s Hospital and the Dana-Farber Cancer Institute, both in Boston.1
These additional data were derived from medical records:
• About 80% of the children died of cancer.
• About 20% of the children died of treatment-related complications.
• 49% died in the hospital; nearly half of the hospital deaths occurred in the intensive care unit.
The investigators point out that cancer is the second leading cause of death in children, following accidents. Nonetheless, they write, "Little is known about the symptoms and suffering at the end of life in children with cancer."
The findings from this research indicate that parents might be an overlooked source of critical information. Review of the medical records reveals that:
• Parents were much more likely than physicians to report that the child suffered fatigue, poor appetite, constipation, and diarrhea.
• Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care.
The study notes that children who die of cancer receive aggressive treatment at the end of life. "Many have substantial suffering in the last month of life," the researchers contend, "and attempts to control their symptoms are often unsuccessful."
In a related opinion piece, Elaine R. Morgan, MD, and Sharon B. Murphy, MD, both of Children’s Memorial Hospital in Chicago, comment that children should be added to the list of groups more likely than others to have inadequate relief of pain.2 Already on the list are women, the elderly and members of racial or ethnic minorities. While the use of hospice care began to gain acceptance in the 1980s, they write, today, only half of adults who die of cancer receive hospice care.
Many needs of dying patients aren’t met, including adequate control of pain and symptoms. Patients also don’t receive relief from:
• loss of dignity and autonomy;
• lack of opportunity for patients and their families to openly discuss death;
• a sense of separation from and abandonment by the primary care team. "Available information suggests that these issues are important for both adult patients and children. Despite the unmet needs," they add, "there are currently only a handful of organized palliative care services for children in the United States."
Given the differences between children and adults, a blanket extension of adult palliative care to children is inappropriate and ineffective. "Caregivers skilled in the care of dying adults generally lack the expertise to deal with the unique medical and psychosocial needs of children," the researchers said. As oncology teams focused primarily on cure often lack training and experience in end-of-life care, a multidisciplinary approach might be best. They issue this caveat, however: "This [approach] should be flexible enough to provide support for both the children whose disease can be cured and those for whom a cure is not yet possible."
References
1. Wolfe J, Grier HE, Klar N, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342(5):326-333.
2. Morgan ER, Murphy SB. Care of children who are dying of cancer [letter]. N Engl J Med 2000; 342(5):347-348.
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