Navigating Ethical Challenges for Pediatric Sickle Cell Pain Management in the Context of the Opioid Epidemic

Abstract

Objectives: The aim was to describe the impact of the opioid epidemic on pain management practices in pediatric sickle cell disease (SCD) and propose a conceptual framework for navigating ethical decision-making in pediatric sickle cell pain management.Methods: A review of the literature on ethical challenges in the management of sickle cell pain was conducted and considered in the context of the opioid epidemic and psychosocial factors affecting youth with SCD. The Integrated Ethical Framework for Pain Management (IEFPM) was applied to pediatric sickle cell pain management using a clinical case example.Results: Implicit bias, health-related stigma, and potential neurocognitive impairment all present unique challenges in ethical decision-making for youth with SCD. National guidelines for prescribing opioid medication may complicate providers' clinical decision-making and affect their sickle cell pain management practices. The IEFPM was found to be applicable to ethical decision-making for pediatric sickle cell pain and captures both patientrelated and provider-related aspects of clinical pain management. Discussion:The opioid epidemic has exacerbated existing ethical challenges for pain management among youth with SCD. The IEFPM provides a conceptual model that can be integrated into health care settings to facilitate ethical decision-making and promote greater health equity in the clinical management of pediatric sickle cell pain.

Growing beyond sickle cell disease: A metasynthesis of children, adolescents, and young adult experiences living with sickle cell disease

“…Additionally, by adolescence, patients living with SCD can require high doses of opioids; attempts to advocate for themselves can be seen as "drug seeking" (Haywood et al, 2014). The constant battle over prompt and appropriate treatment is further complicated by implicit bias and an ongoing opioid crisis (Mulchan et al, 2022). Experiences of racism, prejudice and discrimination in health care interactions can lead to higher pain severity and depression among affected patients (Haywood et al, 2014).…”

The role of ethicists in pediatric hematology/oncology: Current status and future needs

“…As one of the most common genetic diseases, some have highlighted the inequities and injustice regarding lack of funding for SCD clinical care relative to less common, and more White genetic diseases such as cystic fibrosis, 75,76 and the lack of inclusion of SCD-related metrics in the US News and World Report's rankings of Children's Hospitals. 77 Candidates for greater attention from ethicists include, but are not limited to 78 : (a) addressing mistrust of healthcare providers 79,80 and low rates of hydroxyurea acceptance; (b) impact of anti-opioid prescribing laws on pain management for patients with SCD 81,82 ; (c) the hope (and hype) of curative therapies such as stem cell transplantation and gene therapy 83,84 ; (d) other ethical issues related to emerging technologies (e.g., gene therapy and germline editing via CRISPR) 85 ; (e) and related mistrust of the clinical research enterprise by SCD patients and caregivers.…”

Disease‐modifying therapies for sickle cell disease: Decisional needs and supports among adolescents and young adults

“…Shared decision-making may mitigate some barriers to equitable access and use of disease-modifying therapies among individuals with SCD. 17 Shared decision-making is a collaborative process that involves patients, families, and healthcare providers working together to reach a medical decision. 18 During shared decision-making, providers offer information on available treatment options and actively engage patients and families in considering how their values, preferences, and goals for their care intersect with available treatments, with the ultimate goal of patients and families making an informed decision.…”