End-of-Life Care in Sickle Cell Disease and Transfusion-Dependent β-Thalassemia: Clinical, Psychosocial, and Ethical...

Sickle cell disease (SCD) and transfusion-dependent β-thalassemia are no longer pediatric death sentences. With newborn screening, transfusions, and chelation therapy, patients now survive into their 4th-6th decade. Yet as they age, they face mounting complications -pain that never truly resolves, organs failing one by one, and profound isolation. Ironically, palliative care remains scarce despite the clinical complexity. This narrative review examines end-of-life care in these hemoglobinopathies, focusing on pain management, ethical tensions, and the psychosocial needs that intensify as death approaches. We reviewed literature from 2020 to 2025, international guidelines, and European frameworks. The evidence is clear: terminal SCD involves unpredictable crises and intractable pain; β-thalassemia brings slow cardiac decline and iron-laden organ failure. Both demand early palliative integration, yet both are drastically undertreated. Cultural beliefs heavily shape how families accept or reject end-of-life discussions. Disparities in opioid access, lack of disease-specific referral criteria, and absence of flexible hospice models create barriers that disproportionately harm marginalized patients. We conclude that hemoglobinopathy patients deserve the same anticipatory, culturally informed, multidisciplinary palliative care that we increasingly offer to cancer patients. Health systems must establish referral pathways specific to these diseases, permit palliative transfusions in hospice when appropriate, ensure equitable opioid access, and embed psychosocial support in hemoglobinopathy centers.