{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,12]],"date-time":"2026-01-12T16:45:16Z","timestamp":1768236316590,"version":"3.49.0"},"reference-count":0,"publisher":"Hematology Section, Dept. of Radiological Science and Hematology, Catholic University, Rome, Italy","issue":"1","license":[{"start":{"date-parts":[[2026,1,1]],"date-time":"2026-01-01T00:00:00Z","timestamp":1767225600000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Mediterr J Hematol Infect Dis"],"abstract":"<jats:p>Sickle cell disease (SCD) and transfusion-dependent \u03b2-thalassemia have transitioned from being mostly pediatric conditions to complicated, chronic disorders characterized by advancing multi-organ complications. The offering of end-of-life care for these patients is still poorly developed and applied sporadically even in the face of apparent needs. This review examines EOL treatment for hemoglobinopathies, focusing on symptom management, ethical difficulties, and psychosocial-spiritual support. The study utilized an analytical narrative technique, analyzing peer-reviewed literature from 2025, international norms, and European policy frameworks. Findings: The final stages of both SCD and \u03b2-thalassemia are characterized by persistent pain, permanent organ impairment, and significant psychological distress. Regardless of the variations in disease progression, both necessitate prompt and cohesive palliative care measures. Disparities in access to symptom management\u2014particularly within marginalized communities\u2014continue to endure. Cultural influences often play a significant role in shaping decision-making, especially in ethically sensitive contexts like transfusion withdrawal or gene therapy for advanced diseases. The psychosocial and spiritual aspects of suffering become more pronounced as one approaches the end of life, highlighting the need for interdisciplinary teamwork and care that is sensitive to cultural differences. In conclusion, it is essential to provide multidisciplinary, anticipatory, and culturally competent end-of-life care in the context of hemoglobinopathies. Health systems ought to implement referral criteria tailored to specific diseases and encourage adaptable hospice models, ensuring access to transfusions when clinically indicated. Access to opioids, enrolment in hospice care, and psychosocial support must be prioritized, especially in areas with a high prevalence of hemoglobinopathy.<\/jats:p>","DOI":"10.4084\/mjhid.2026.015","type":"journal-article","created":{"date-parts":[[2026,1,1]],"date-time":"2026-01-01T14:56:38Z","timestamp":1767279398000},"page":"e2026015","source":"Crossref","is-referenced-by-count":0,"title":["END-OF-LIFE CARE IN SICKLE CELL DISEASE AND TRASFUSION DEPENDEND-\u03b2-THALASSEMIA: CLINICAL, PSYCHOLOGICAL, AND ETHICAL CONSIDERATION"],"prefix":"10.4084","volume":"18","author":[{"given":"Sophia","family":"Delicou","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aikaterini","family":"Xydaki","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Maria","family":"Moraki","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Theodoros","family":"Aforozis","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"2554","published-online":{"date-parts":[[2026,1,1]]},"container-title":["Mediterranean Journal of Hematology and Infectious Diseases"],"original-title":[],"link":[{"URL":"https:\/\/www.mjhid.org\/mjhid\/article\/download\/6100\/4823","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.mjhid.org\/mjhid\/article\/download\/6100\/4815","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/www.mjhid.org\/mjhid\/article\/download\/6100\/4823","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,1,12]],"date-time":"2026-01-12T13:39:38Z","timestamp":1768225178000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mjhid.org\/mjhid\/article\/view\/6100"}},"subtitle":["Challenges  in Supportive Care, Equity, and Compassion at End of Life"],"short-title":[],"issued":{"date-parts":[[2026,1,1]]},"references-count":0,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,1,1]]}},"URL":"https:\/\/doi.org\/10.4084\/mjhid.2026.015","relation":{},"ISSN":["2035-3006"],"issn-type":[{"value":"2035-3006","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,1,1]]}}}