Enhancing Quality of Life in Sickle Cell Disease Through Palliative Care

Sickle cell disease (SCD) is a serious condition affecting over 7 million people worldwide, including more than 100,000 individuals in the U.S. It disproportionately impacts Black and Brown communities.

It results from abnormal hemoglobin that deforms red blood cells, causing severe pain, organ damage, complications, and premature death. The life expectancy of a patient having SCD remains significantly reduced despite advances in therapy. In 2021, around 376,000 people with SCD died worldwide, and it was the 12th leading cause of death in children under five.

Palliative care, which provides holistic support alongside correct medical therapy, helps to enhance the quality of life for patients with SCD. This includes managing pain, addressing psychological, social, and spiritual needs, coordinating care among multiple specialists, and supporting families. Despite its benefits, palliative care is still underutilized; less than 0.5% of hospitalized patients with SCD received these services in the U.S between 2008 and 2017.

Palliative care provides interdisciplinary support alongside disease-focused treatment, addressing physical, psychological, social, and spiritual needs. Evidence from other serious illnesses like cancer, heart failure, chronic lung disease, end-stage kidney disease, cirrhosis, and others shows that it can reduce symptoms, improve quality of life, support caregivers, and enhance communication and care coordination.

Multidisciplinary palliative teams are especially helpful for patients with complex or severe SCD. They can create individualized care plans, manage symptoms, challenge bias, and help patients navigate the healthcare system. Palliative care also addresses health disparities and builds trust in communities historically affected by systemic inequities. They provide trauma-informed support and advocate for patients and families throughout their care.

New experimental therapies for SCD may offer a cure but come with risks and uncertainty. Palliative care teams support patients and families in making complex decisions, coordinate care across multiple specialists, and assist during critical times such as the transition from pediatric to adult care. Not all patients with SCD need palliative care; it is more helpful for those with severe symptoms, frequent hospitalizations, complex complications, or high-risk therapies.

Many patients and families can benefit, and thoughtful integration of palliative care into SCD treatment is needed to improve outcomes. However, integrating palliative care for people with SCD will require addressing challenges similar to those seen in other serious illnesses.

Research on the impact of palliative care in SCD is limited. Expanding access and integrating person-centered palliative care can improve outcomes, reduce suffering, and provide lifelong, compassionate support for patients and families.

Reference:

Nwogu-Onyemkpa E, Collins G, Erondu M, Kaye EC. Involving Palliative Care to Improve Outcomes in Sickle Cell Disease. New England Journal of Medicine. 2025 Oct 18.

https://www.nejm.org/doi/full/10.1056/NEJMp2505493