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Cancer Symptoms In Children

SYMPTOMS AND SUFFERING AT THE END OF LIFE IN CHILDREN WITH CANCER J Wolfe et al The New England Journal of Medicine Vol 342 (February 2000) 326-333

Children with cancer have an approximate 25% mortality rate; in fact, cancer is the leading cause of nonaccidental death in children. High-quality palliative care is the expected standard at the end of life; however, it is not known whether children with cancer receive this standard. Although studies have focused on end-of-life suffering in adults, few studies have addressed the overall experience of children dying of cancer.

Physicians tend to focus on treatment to achieve a cure, and sometimes it is difficult for them to change focus, even when there is little hope of finding a cure. Researchers in this study interviewed the parents of children who had died of cancer and abstracted data from the children's charts to determine patterns of care, symptoms experienced in the last month of life, the effectiveness of treatment, and factors related to suffering from pain at the end of life.

Methodology. The parents of children who had died of cancer between 1990 and 1997 at Children's Hospital, Boston, and the Dana-Farber Cancer Institute, Boston, were interviewed. Parents were considered eligible if their child had died of cancer more than one year before the study began, they spoke English, and their child's physician permitted researchers to contact them. The institutional review boards of both hospitals approved the study. Parents were solicited by mail via a postage-paid postcard that they could return if they did not wish to participate. Researchers completed 103 interviews of 165 eligible parents for a response rate of 62%.

Trained interviewers collected data, conducting the majority of interviews via telephone. They asked parents whether their child had the following symptoms during the last month of life:

* pain,

* poor appetite,

* nausea and vomiting,

* constipation,

* diarrhea,

* dyspnea, or

* fatigue.

Interviewers also asked parents to rate the degree of suffering as a result of each symptom, whether the child received treatment for the symptom, and, if so, the successfulness of the treatment. Parents were asked to assess their child's level of anxiety, fear, mood, and the degree to which the child had fun during the last month of life. Additionally, interviewers asked parents their perception of the degree of involvement of the physician in end-of-life care, the quality of care provided, the quality of communication, and the peacefulness of their child's death. Demographic data regarding the children also were collected.

The Statistical Analysis System was used to analyze data. A variety of tests, including the two-tailed Fisher exact test, the Student t test, [Kappa] statistic, McNemar test, and multivariate logistic-regression, were used.

Results. Twenty-one percent of the children died of a treatment-related complication, and 79% died of progressive disease. Forty-nine percent died in the hospital. Fatigue, pain, dyspnea, and poor appetite were reported most commonly. Overall, 89% of the children experienced a lot or a great deal of suffering from at least one symptom, and 51% suffered from three or more symptoms. Children who died of a treatment-related complication suffered from more symptoms than those who died of progressive disease.

During the last month of life, the majority of children had little or no fun, were more than a little sad, and were not calm or peaceful most of the time. Seventy percent of parents described their child's death as very peaceful. In univariate analyses, factors associated with a child's suffering from pain were lack of active involvement by the oncologist in end-of-life care and the perception of receiving conflicting information from caregivers.

Discussion. Researchers found that children who died of cancer experienced substantial suffering and that treatment of fatigue, pain, or dyspnea seldom was successful. Fatigue was the most frequently reported symptom, and most children suffered a great deal from fatigue. The researchers reported that there might have been a lack of awareness among physicians that the suffering caused by certain symptoms may be amenable to palliation. Researchers also found that earlier discussion of hospice care was associated with a greater likelihood that parents would describe their child as calm and peaceful during the last month of life. This study suggests that active involvement by caregivers committed to palliation can help alleviate the suffering of children dying from cancer.

This study has several limitations, one of which is that data were based on parents' perceptions and may not have reflected the actual experience of the child. Another limitation is that patterns of care were studied from one institution only. A last limitation is selection bias because physicians either denied or permitted researchers to contact parents. The study as a whole suggests that greater attention to symptom control and the overall well-being of children and better communication between parents and caregivers might ease the suffering of children dying of cancer.

MARY LYNNE WEEMERING RN, MSN, CNOR NURSING RESEARCH COMMITTEE

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