Palliative Care Addresses an Unmet Need in Sickle Cell Disease

Embedding palliative care services within a comprehensive sickle cell disease (SCD) center can reduce length of stay and improve outpatient pain management. Those were the central findings from a recent quality improvement study at Cleveland Clinic. Crawford Strunk, MD, a pediatric hematologist/oncologist, presented the data at the 67^th American Society of Hematology Annual Meeting in December 2025.

The interventions resulted in a significant decrease in the average length of stay. “In just one year, we noted a reduction in the length of stay from approximately nine days to about three and a half days,” says Dr. Strunk. Alongside this, the average annual hospitalization rate per person decreased from 1.4 to 1.3 admissions.

A comprehensive model of care

Vaso-occlusive pain crises are common in people with SCD. These events account for an estimated 84% of hospitalizations in adults and can be severe and long-lasting, leading to a decrease in quality of life and an increase in healthcare utilization.

Cleveland Clinic established a Sickle Cell Disease Medical Neighborhood (SCMN) in 2020 as a hub for comprehensive SCD care. The multisystem nature of the disease, which can affect nearly every organ system, requires a multidisciplinary, well-coordinated approach. The center brings together adult and pediatric subspecialists to manage care for patients across their lifespan. The SCMN also facilitates consistent, model-based care for patients with SCD.

In just one year, from April 2024 to March 2025, enrollment for the SCMN increased from 190 patients to 231.

Palliative care: An unmet need in the SCD community

While elements of palliative and biopsychosocial care have been incorporated into routine SCD care, broader adoption across major centers has been largely overlooked. So say Nwogu-Onyemkpa, Collins, Erondu, et al., in a recent New England Journal of Medicine article. They call on SCD providers to identify opportunities to integrate palliative care into existing care models.

Cleveland Clinic palliative care physicians consulted with those authors and others to develop key interventions for the SCMN patient community. The outpatient model was implemented in February 2024 and expanded in April 2024 to include inpatient pain management. The primary interventions are as follows:

• A consult trigger for palliative care and hematology was embedded in the inpatient SCD hospital admission order set. This helps get specialists on board earlier. Says Dr. Strunk, “We are paged first thing in the morning if a patient gets admitted overnight.”
• Outpatient palliative care follow-up was implemented for improved pain management. “This helps support ongoing pain management and facilitate adjuvant care in an outpatient setting. Mental healthcare, for example, may be recommended in the management of neuropathic pain,” notes Dr. Strunk.
• Personalized individual care plans were created for high-utilizing patients. “After reaching a certain number of admissions per year, patients automatically have an inpatient care plan, which helps provide continuity from one physician to the next, both in the ER and on the floor.

A look ahead

Dr. Strunk and colleagues are enthusiastic about the promising results of the new integrated care model and plan to continue evaluating the data and refining their approaches as needed. Two future goals include analyzing the cost savings associated with length-of-stay improvements. Additionally, they plan to expand the individual care plans to all patients with SCD, not just the high-utilizing cohort.

Above all, Dr. Strunk says their goal is to maintain the model to continue improving outcomes. “We want to make sure that this is not just a one-time thing. Rather, that our delivery of care reflects consistency with these new changes moving forward.”