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

Although advances in the treatment of childhood and adolescent cancer have led to an overall survival rate of nearly 85%, cancer continues to be the leading cause of death from disease in this age group. In 2020, an estimated 1,730 children and adolescents in the United States will die of cancer-related causes (Siegel et al., 2020). Attentive nursing care that emphasizes the alleviation of symptoms (including pain) supports optimal end-of-life care for the child or adolescent, as well as the family. The Association of Pediatric Hematology/Oncology Nurses (APHON) affirms that pain experienced by the child or adolescent who is dying of cancer can be managed effectively. Two strategies are critical to achieving this goal: (1) making prevention and alleviation of pain the key focus of an interdisciplinary team that works in partnership with the patient and parents, and (2) aggressively using pharmacologic and nonpharmacologic interventions. As a mem- ber of the team, the pediatric oncology nurse has an essential role in end-of-life pain management through making nursing assessments and planning, implementing, and evaluating interventions.

Background Children and adolescents who are dying of cancer often experience complex pain that can be challenging to manage. Pain remains one of the most prevalent and dis- tressing symptoms at the end of life and is associated with decreased health-related quality of life (Eche et al., 2020; Montgomery et al., 2020; Wolfe et al., 2015). Pain management needs can also rapidly escalate near the end of life, requiring expert interdisciplinary care. As cancer progresses, pain can result from multiple sources, including these: • distention or infiltration of tissue or bone • inflammation from infection, necrosis, or obstruction • side effects of treatment (e.g., chemotherapy, surgery, or radiation), including massive infection, organ failure, mucositis, typhlitis, and skin breakdown • neuropathic pain that occurs when nerves are injured by tumor infiltration or as a side effect of chemotherapy, radiation, or other therapy. Effective pain management at the child’s or adoles- cent’s end of life is also essential in caring for the family. Parents who perceive that their child had unrelieved pain at the end of life are likely to be affected by that expe- rience even more than 5 years after the child’s death (Kreicbergs et al., 2005). Furthermore, parents’ percep- tion of their child’s quality of life at the time of death predicts the parents’ own grief and depression out- comes (McCarthy et al., 2010). Likewise, siblings who perceive that their sibling’s death was not peaceful are at increased risk for unresolved grief, even years after the death (Lövgren et al., 2018). The role of the pediat- ric oncology nurse includes providing pain interventions, comfort, and support to the child or adolescent and fam- ily (Duffy et al., 2019).

Positions and Recommendations 1. Prevention and alleviation of pain is a primary goal of care for the child or adolescent who is dying of cancer. Unrelieved pain is incapacitating and has multiple deleterious effects on the child or adolescent and the family. The primary goal of pain management is consis- tent relief of pain that supports quality of life through the use of appropriate analgesics, adjuvant medications, and nonpharmacological interventions. This goal must be made a priority across all care settings and by all mem- bers of the healthcare team. TheWorld Health Organization’s analgesic stepladder and updated guidelines for pain management provide a framework for clinical care (Anekar & Cascella, 2020). The guidelines promote thorough pain assessment and inter- ventions that include the use of opioid and nonopioid anal- gesics, adjuvant medications, and therapeutic modalities such as radiotherapy to achieve sustained relief of pain. The pain management plan for the child or adolescent with cancer should include the following: • regular assessment of pain in both inpatient and out- patient settings, using patient-reported outcome mea- sures (both quantitative and qualitative) when possible • readily available access to analgesics in the hospital or clinic and at home, when the presence of pain is antici- pated, assessed, or reported • interventions that are appropriate to prevent and treat the pain being experienced • an interdisciplinary, holistic approach to managing pain • access to pain management specialists 24 hours a day to assist parents and caregivers if the pain increases or changes in naturewhile the child or adolescent is at home • clear written guidelines as part of an individualized plan of care for pain management.