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Originally published as JCO Early Release 10.1200/JCO.2005.04.4677 on November 28 2005 © 2005 American Society of Clinical Oncology.
Pediatric Palliative Care: Relationships Matter and So Does Pain ControlHarvard Medical School, Boston; and Education Development Center Inc, Newton, MA 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.1 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.2-4 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 al2 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 al2 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,5 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.6 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.7-9 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 al3 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 quality of care, and, as in the Hinds et al2 study, human relationships were of paramount importance. Higher parental ratings of physician care were associated with giving clear information about what to expect in the end-of-life period; communicating bad news in a sensitive and caring manner; communicating directly with the child, when appropriate; and preparing the parent for the circumstances likely to arise near the time of the child’s death.3 Importantly, whereas parents focused on communication and relational issues, physicians based their assessments on biomedical issues (whether the clinicians had received parental reports that the child had experienced unrelieved pain and whether the child had been hospitalized for > 10 days in the last month of life). Interestingly, poor relief of pain was an important indicator to physicians that quality of care should have been better, yet unrelieved pain did not undermine the parents’ assessment of quality of care. This finding is consistent with studies by other researchers who have found that patients with high levels of pain (and family members witnessing the pain) may be quite satisfied with the performance of their physicians.10 High satisfaction in the face of poor pain relief may be a function of the mistaken parental and patient belief that pain is to be an expected, irremediable part of the dying process and that their doctors did all for the patient that they could do. It is admirable that clinicians believe that unrelieved pain is a marker of less than adequate care but disappointing that psychosocial issues are not something they reflect on when considering quality of care. Moreover, it is troubling that patients and families still do not know that pain relief is almost universally possible, particularly at the end of life when palliative sedation is a morally and legally acceptable option for the most intractable patients. Presumably, if patients and families were as aware as clinicians of the standard of care, they would demand better pain management. Parent and patient demands for pain relief are particularly important in light of the third study by Kreicbergs et al,4 which found that more than one third of parents interviewed reported that their child had unrelieved pain near the end of life, and 57% of these parents reported that they were still "moderately to much affected by this experience" 4 to 9 years after the child’s death. There is no reason to believe that this problem is unique to Sweden, where the survey was conducted. Wolfe et al11 documented parental reports that a significant proportion of children with advanced cancer, who were being treated in a major US comprehensive cancer center, died in unrelieved pain. Not only parents, but clinicians themselves, have reported the problem. In a multisite survey of clinicians caring for gravely ill children, approximately 20% of attending physicians agreed with the statement that, "At this institution, children are often given inadequate pain medication."12 In addition to unrelieved pain, Kreicbergs et al4 found that another major stressor for parents was a difficult moment during the active dying process. Moreover, the greatest predictor of a difficult moment was the absence of staff at the time of death. As with pain, more than half the parents reporting a difficult moment in the dying process said it still affected them many years later. The data of Kreicbergs et al4 also suggest that contact with caregivers after the child’s death may be beneficial for parents, perhaps affecting their own emotional health for years to come. Another recent interview study confirms the importance of staying connected with bereaved parents. In that study, parents said that they felt they could count on clinicians if they were there from beginning to end (from diagnosis through death) and did not abandon them afterward (eg, sent cards, attended the child’s funeral, or provided assistance of various kinds to the parents after the child’s death).12 Continuing connection and positive relationships among professional, child, and family do not simply raise parents’ assessments of quality of care; such relationships are likely to be therapeutic in and of themselves.13,14 Yet, there has been little emphasis in medical education on the competencies and psychological strengths needed for sustaining connection and communication with the dying and even less emphasis on staying emotionally available to gravely ill or dying children and their parents. Nevertheless, broad changes at the national level have created new opportunities for action and new resources. For example, the Accreditation Council for Graduate Medical Education recently included in their requirements that residency programs assess clinical competence in communication and interpersonal skills.15 The American Board of Internal Medicine has released a Physician Charter for Professionalism that includes a call for competence in communication and relational skills.16 Both the Children’s Hospital of Boston (E.C. Meyer, and R.D. Truog, personal communication, August 2005) and the Johns Hopkins Children’s Center17 have developed innovative training programs for residents, attending physicians, nurses, chaplains, and social workers using actors who play the part of family members to cultivate the kinds of relational and communication skills called for in these studies. Other promising communication skills programs are emerging as well.18,19 With specific regard to pediatrics, the Nathan Cummings Foundation, the Project on Death in America, and the Argosy Foundation, as well as other anonymous donors, have supported the development of a national, interdisciplinary curriculum and training program in pediatric palliative care, which emphasizes family-centered care, adolescent participation in decision making, adequate pain management, ethical principles to guide decision making, and strong communication, relational, and psychosocial skills and attitudes.20,21 Peer reviewed by the National Association of Children’s Hospitals and Related Organizations, the Association of Medical School Pediatric Department Chairs, and the Society of Pediatric Nurses, this resource is now available free on the Internet and is being used in a wide variety of ways within medical schools, children’s hospitals, hospices, and home-health agencies serving children with life-threatening conditions and their families.18,19 Curricula are also available that focus on the educational needs of pediatric nurses in a palliative care context22 as well as professionals working in hospice and other programs committed to improving expertise in pediatric palliative care.23 To build stronger therapeutic alliances with patients near the end of life and their families, motivated leaders can point to the Accreditation Council for Graduate Medical Education and American Board of Internal Medicine initiatives to harness institutional support for innovative educational programs. In so doing, they will have ample curricular materials and training approaches to draw on in fashioning and delivering robust offerings. When life-sustaining interventions are no longer able to offer cure, the therapeutic relationship in combination with expert skill in the art and science of palliation are what remain. Oncologists can and should play a leading role in the national effort to enhance these critical competencies. Authors’ Disclosures of Potential Conflicts of Interest The authors indicated no potential conflicts of interest. REFERENCES 1. Field MJ, Behrman RE When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. Washington, DC, National Academies Press, 2003 2. Hinds P, Drew D, Oakes L, et al: End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 23:9146-9154, 2005 3. Mack J, Hilden J, Watterson J, et al: Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23:9155-9161, 2005 4. Kreicbergs U, Valdimarsdottir U, Onelov E, et al: Care-related distress: A nationwide survey of parents having lost their child to cancer. J Clin Oncol 23:9162-9171, 2005 5. Daugherty C, Ratain MJ, Grochowski E, et al: Perceptions of cancer patients and their physicians involved in phase I trials. J Clin Oncol 13:1062-1072, 1995[Abstract] 6. Neville KL: Mature Beyond Their Years: The Impact of Cancer on Adolescent Development. Pittsburgh, PA, Oncology Nursing Press, 2000 7. Riley L, Coolican M: Needs of families of organ donors: Facing death and life. Crit Care Nurse 19:53-59, 1999[Medline] 8. Bartucci M: Organ donation: A study of the donor family’s perspective. J Neurosci Nurs 19:305-309, 1987[Medline] 9. Coolican M: Families: Facing the sudden death of a loved one. Crit Care Nurs Clin North Am 6:607-612, 1994[Medline] 10. Dawson R, Spross JA, Jablonski ES, et al: Probing the paradox of patients’ satisfaction with inadequate pain management. J Pain Symptom Manage 23:211-220, 2002[CrossRef][Medline] 11. Wolfe J, Grier HE, Klar N, et al: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342:326-333, 2000 12. Solomon MZ, Sellers DE, Heller KS, et al: New and lingering controversies in end-of-life care. Pediatrics 116:872-883, 2005 13. Heller KS, Solomon MZ: Continuity of care and caring: What matters to parents of children with life-threatening conditions. J Pediatr Nurs 20:335-346, 2005[CrossRef][Medline] 14. Browning D: To show our humanness: Relational and communicative competence in pediatric palliative care. Bioethics Forum 18:23-28, 2002[Medline] 15. ACGME outcome project general competencies for residents. http://www.acgme.org/outcome/comp/compfull.asp 16. American Board of Internal Medicine: Physician charter for professionalism. http://www.abim.org/cert/tet.shtm 17. Johns Hopkins Medicine: Setting the stage for organ donation. http://www.hopkinsmedicine.org/Transplant/images/OutreachFall043.pdf 18. Fallowfield L, Jenkins V, Farewell V, et al: Enduring impact of communication skills training: Results of a 12-month follow-up. Br J Cancer 89:1445-1449, 2003[CrossRef][Medline] 19. Han PK, Keranen LB, Lescisin DA, et al: The palliative care clinical evaluation exercise (CEX): An experience-based intervention for teaching end-of-life communication skills. Acad Med 80:669-676, 2005[CrossRef][Medline] 20. Solomon MZ, Browning D, Dokken D, et al: The Initiative for Pediatric Palliative Care (IPPC) curriculum: Enhancing family-centered care for children with life-threatening conditions. (Modules 1-5). Education Development Center, Inc. http://www.ippcweb.org/curriculum.asp 21. Browning DM, Solomon MZ: The initiative for pediatric palliative care: An interdisciplinary educational approach for healthcare professionals. J Pediatr Nurs 20:326-334, 2005[CrossRef][Medline] 22. American Association of Colleges of Nursing: ELNEC Pediatric Palliative Care Training Program. http://www.aacn.nche.edu/ELNEC/Pediatric.htm 23. National Hospice and Palliative Care Organization: Education and training curriculum in pediatric palliative care. http://www.nhpco.org/i4a/pages/index.cfm?pageid=3409
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Copyright © 2005 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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