Position Paper on Pain Management During End-of-Life Care

• impact of the parents’ attitudes on a child’s or adoles- cent’s pain and suffering • safe, effective pain management options individual- ized to meet the needs of the child or adolescent • common side effects of analgesics and strategies for managing side effects • whom to contact for help and when • common fears and misconceptions about pain man- agement (e.g., addiction, respiratory depression). Children, adolescents, and parents need to be assured that healthcare professionals will remain actively involved in their care and that they will have access to experts in pain management throughout the child’s or adolescent’s end of life. They need to know that the family’s strengths will be recognized and valued and that the family will be supported by the healthcare team as they face chal- lenges. Families need to be confident that if a conflict occurs between the healthcare professionals, the child or adolescent, and the family, it will be resolved ethically. Families should be reassured that their goals for their child’s quality of life will be acknowledged, respected, and supported by the healthcare team. 3. Aggressive pharmacologic interventions and adjuvant and nonpharmacologic therapies are used when necessary to achieve adequate pain control for children and adolescents dying of cancer. Pain occurring at the end of life is complex and diffi- cult to manage, and those dying of cancer may require aggressive multimodal management with pharmaco- logic and nonpharmacologic approaches to improve pain control. Uncontrolled pain results in decreased quality of life, difficulty sleeping, restrictions in activities, increased pain sensitivity, and emotional problems (Tutelman et al., 2018). The appropriate analgesic dose is thus one that effectively relieves the child’s or adolescent’s pain (National Hospice and Palliative Care Organization, 2019). Rapid escalation of analgesic doses may be necessary to achieve adequate pain control or to maintain pain control when the patient’s tolerance of the medication makes it less effective. Pharmacologic Interventions Pain is treated with analgesic drugs that include opioids, nonopioids, and adjuvant analgesics. These analgesics should be given on a scheduled basis. Opioids that bind to the mu receptors in the central nervous system are the most commonly used class of opioids in treating severe cancer pain. Medications in this class include morphine, fentanyl, codeine, hydromorphone, and methadone. These drugs have no maximum doses unless intolerable

2. Interdisciplinary healthcare teams support a family-centered approach to pain management at the end of life. The American Academy of Pediatrics (2013) and the World Health Organization (2020, n.d.) recommend an interdisciplinary team approach to caring for children and adolescents with cancer at the end of life and an approach that includes access to palliative care. Receipt of palliative care concurrent with oncology care allows children and adolescents to experience more meaningful life events and to die at home (if that is desired) without having poorer pain outcomes (Friedrichsdorf et al., 2015; National Coalition for Hospice and Palliative Care, 2018). The interdisciplinary team should provide a family-centered pain management plan that is indi- vidualized and responsive to the child or adolescent’s needs and goals; the plan should be flexible and evi- dence based and should include both pharmacological and nonpharmacological interventions (National Hospice and Palliative Care Organization, 2019). As essential par- ticipants in this team-based approach, children and ado- lescents should be recognized as experts on their own pain. Parents should be acknowledged as experts in their child’s care and as advocates for the child or adoles- cent. According to their desire for participation, children and adolescents, as well as parents, should be provided equal access to information and the opportunity to par- ticipate in decision making and goal setting. Children, adolescents, and their parents need informa- tion and education regarding all aspects of pain manage- ment at the end of life so that they can participate in the plan of care. The information and education should be age appropriate and individualized, and it should be pro- vided in the family’s preferred language (or languages) in a manner that is easily comprehended. The timing, quan- tity, and level of the information depend on the needs and desires of the child or adolescent and the parents. This information should cover, but is not limited to, these topics: • the basic concepts of pain management and its goals • ways to recognize and assess pain, including subtle changes in pain • children’s perception of pain • factors that influence the experience of pain and suf- fering—for example, disrupted sleep, anger, depres- sion, feelings of helplessness, fears, anxiety, fatigue, personality, culture, age, chronicity of pain • beliefs and values related to the child’s family, culture, and society