Pediatric Palliative Care: Relationships Matter and So Does Pain Control
Authors: Mildred Z. Solomon, David Browning
Journal: Journal of Clinical Oncology (2005)

More than 50,000 children die each year in the United States, and hundreds of thousands more struggle with the challenges of a life-threatening condition. Much about their tragic circumstances is beyond medicine’s control. Nevertheless, three articles in this issue provide new insights into the needs of these children and their parents. Careful reading of these studies suggests concrete steps committed clinicians can take to help meet those needs. A theme across all three studies is clear: relationships matter. In addition, two of the studies bring attention to the continuing problem of unrelieved pain near the end of life. Because modern medicine does have the technical means to reduce nearly all pain, it can be argued that the failure to do so is not a technical failing but rather a symptom of insufficient commitment. Viewed this way, all three articles underscore the centrality of nonabandonment. They underscore the importance of staying connected with patients and families and providing the best that medicine can offer, including both human contact and palliative interventions like optimal pain medication, even and especially when death is imminent. Hinds et al surveyed pediatric patients with advanced cancer, who were aged 10 to 20 years old, within 7 days of participating in one of following three end-of-life decisions: whether to enroll in a phase I trial, whether to institute a do not resuscitate order, and whether to forego life-sustaining technologies in favor of palliative care measures only. They found that these children and adolescents realized they were involved in an end-of-life decision, understood the consequences of their decision (that death is the outcome no matter what and that a phase I trial brings personal hazards but may help others), and could share the reasons for their preferences. In short, Hinds et al demonstrate that older children and particularly adolescents have sufficient cognitive ability to warrant an active role in decision making about their care. Moreover, both children and adolescents were influenced by their concern about others. Sometimes, this manifested as concern to act in ways that would make their parents happy (for example, by enrolling in the phase I trial even when they did not wish to). However, both children and their parents were also often motivated out of concern for others not personally known to them. The authors report this altruistic stance toward strangers as surprising because at least one study has documented that altruism is not a major motivator of phase I trial enrollment for adults, and they speculate that such altruism among the young people they surveyed may be part of the maturational effect of a life-ending illness on a child or adolescent. It also strikes us that altruism may be more important among gravely ill children and their parents than among adults near the end of life because of the desire to see some good arise in the context of such great despair. The poignancy of a young life cutoff so prematurely may provide a context in which both the children and their parents seek a way to make something good happen in an otherwise deeply tragic situation. There are studies documenting that, after death, parents have found meaning and solace in the opportunity to donate their children’s organs. There may be a similar underlying urge, even among the children themselves, to choose actions before death that will enable them to make a positive contribution to others as part of their legacy. These explanations are only speculative but are worthy of further exploration in future research. Mack et al surveyed parents of children who had died of cancer and their oncologists to ascertain parents’ and physicians’ assessments of the quality of care the children had received. A full 82% of the parents felt that the quality of physician care at the end of life was excellent or very good. However, the better the communication between physicians and parents, the greater was the parental assessment of JOURNAL OF CLINICAL ONCOLOGY E D I T O R I A L VOLUME 23 NUMBER 36 DECEMBER 2