Palliative & Supportive Care

Palliative care has evolved from an end-of-life approach into an integral specialty that works alongside life-prolonging treatment. Interdisciplinary palliative care can help identify clinical and psychosocial support needs, improving quality of life for people with EHE and easing the burden on caregivers. People with EHE and their caregivers are encouraged to talk with their doctor about incorporating this support early in the disease journey, rather than waiting until the end of life.

Pain Management

Tumor-related pain is one of the most commonly reported symptoms of patients with EHE, and its pathophysiology is not well understood. It is suspected that EHE-related pain may be related to cytokine release from the tumor, which may, in turn, be responsible for the limited response to opioid pain medications. Because the course of EHE is highly variable, it is important to include palliative and pain management specialists as integral members of the care team to address supportive care needs.

Therapeutic Strategies

EHE-related pain can vary greatly; it can be persistent, severe, and present in sudden flares that are difficult to control with opioids. An interdisciplinary palliative care and pain management approach should be personalized to the individual. Therapeutic management may include:

• Medications: nonsteroidal anti-inflammatory drugs (NSAIDs), including ketorolac tromethamine, neuropathic pain medications such as gabapentin, and opioids, with rotation considered if tolerance or side effects develop.
• Localized surgery or radiation therapy: for some symptomatic lesions, these modalities can be used to manage pain.
• Interventional procedures: may be considered with input from anesthesiology or pain specialists.
• Physical activity and movement: exercise, physical therapy, and other movement-based approaches can help reduce pain and maintain function alongside medical treatment.
• Non-pharmacological pain management: techniques such as meditation, mindfulness, and visualization may be used to complement traditional medical interventions.

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