Palliative treatment is directed toward the relief of symptomsas well as assistance with anticipated adaptations that maycause distress and diminish the quality of life of the dying child.Elements of palliative care include pain management; expertise with feeding and nutritional issues at the end of life; and management of symptoms, such as minimizing nausea and vomiting, bowel obstruction, labored breathing, and fatigue.Psychological elements of palliative care have a profound importance and include sensitivity to bereavement, a developmentalperspective of a child’s understanding of death, clarification ofthe goals of care, and ethical issues. Curative care and palliativecare can coexist; aggressive pain medication may be providedwhile curative treatment is continued in the hopes of a remission or improved health status. Palliative care is delivered with amultidisciplinary approach, giving a broad range of expertise topatients and families as well as providing a supportive networkfor the caregivers. Caregivers involved may be pediatricians,nurses, mental health professionals, social workers, and pastors.
A model of integrated palliative care rests on the following principles:
Article I. Respect for the dignity of patients and families. The clinician should respect and listen to patient and family goals, preferences, and choices. School-age children can articulate preferences about how they wish to be treated. Adolescents, by the age of 14, can engage in decision making (see Section 12). The pediatrician should assist the patient and the family in understanding the diagnosis, treatment options, and prognosis; help clarify the goals of care; promote informed choices; allow for the free flow of information; and listen to and discuss the social-emotional concerns. Advanced care (advance directives) should be instituted with the child and parents, allowing discussions about what they would like as treatment options as the end of life nears. Differences of opinion between the family and the pediatrician should be addressed by identifying the multiple perspectives, reflecting on possible conflicts, and altruistically coming to agreements that validate the patient and family perspectives, yet reflect sound practice. Hospital ethics committees and consultation services are important resources for the pediatrician and family members.
Article II. Access to comprehensive and compassionatepalliative care. The clinician should address the physicalsymptoms, comfort, and functional capacity, with specialattention to pain and other symptoms associated with thedying process, and respond empathically to the psychologicaldistress and human suffering, providing treatment options.Respite should be available at any time during the illness toallow the family caregivers to rest and renew.
Article III. Use of interdisciplinary resources. Because of the complexity of care, no one clinician can provide all of the needed services. The team members may include primary and subspecialty physicians, nurses in the hospital/facility or for home visits, the pain management team, psychologists, social workers, pastoral ministers, schoolteachers, friends of the family, and peers of the child. The child and family should be in a position to decide who should know what during all phases of the illness process.
Article IV. Acknowledgment and support provisions for caregivers. The death of a child is difficult to accept and understand. The primary caregivers of the child, family, and friends need opportunities to address their own emotional concerns. Siblings of the child who is dying react emotionally and cognitively, based on their developmental level. Team meetings to address thoughts and feelings of team members are crucial. Soon after the death of the child, the care team should review the experience with the parents and family and share their reactions and feelings. Institutional support may include time to attend funerals, counseling for the staff, opportunities for families to return to the hospital, and scheduled ceremonies to commemorate the death of the child.
Article V. Commitment to quality improvement of palliative care through research and education.
Hospitals should develop support systems and staff to monitor the quality of care continually, assess the need for appropriate resources, and evaluate the responses of the patient and family members to the treatment program. Issues often arise over less than completely successful attempts to control the dying child’s symptoms or differences between physicians and family members in the timing of the realization that death is imminent. Consensus results in better palliative care from the medical and psychosocial perspective.