Many patients avoid the topic of palliative care because they think it means giving up. The term is often confused with hospice care, which is comfort care at the end of life.
But that’s not what palliative care is: Palliative care in systemic mastocytosis (SM) is about quality of life. It aims to provide support for the physical and emotional hardships of living with this rare disease.
What is palliative care?
Palliative care for SM is not a single treatment, but an approach. It’s a specialized form of care that focuses on relieving symptoms to help patients feel better while living with a serious or chronic illness.
Palliative care is not a replacement for treatment aiming to control a disease; it’s an additional layer of support. This means that for people with SM, palliative care may be provided alongside disease-modifying therapies like mast cellMast cell A type of white blood cell produced in the bone marrow. They help defend against infections and play a key role in allergic reactions. In SM, mast cells become overactive and build up throughout the body. stabilizers or tyrosine kinase inhibitors.
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Who is eligible?
Anyone with a chronic, life-limiting illness is eligible for palliative care at any stage of disease.
This may be particularly important for individuals whose mastocytosisMastocytosis Rare disease caused by the buildup of mast cells. Cutaneous mastocytosis primarily affects the skin and is more common in children, while systemic mastocytosis affects internal organs and is more common in adults. symptoms are persistent, difficult to control or significantly affect daily life. These may include physical symptoms like severe itching, fatigue or bone pain, or mental health troubles like anxiety, depression or brain fog.
Palliative care treatments
Palliative care treatment doesn’t look the same for any two people. Someone with indolent SMIndolent SM A subtype of nonadvanced SM caused by the abnormal accumulation of mast cells in the bone marrow and other organs. Indolent SM accounts for around 90% of SM cases. who is seeking help for insomnia will have very different needs from someone with mast cell leukemiaMast cell leukemia The most severe subtype of SM, caused by the rapid buildup of immature mast cells in the bone marrow and blood. Mast cell leukemia accounts for less than 5% of SM cases and has a poor prognosis. who is coming to terms with a difficult prognosis.
Depending on individual needs, palliative care may include helping manage pain, gastrointestinal symptoms, fatigue, and skin symptoms associated with mast cell mediator release.
Treatments may include prescription or over-the-counter medications like antihistaminesAntihistamines Medications that block the effects of histamine, the chemical found in mast cells that is responsible for many of the symptoms of SM, as well as many allergic reactions. and medicated creams or lotions. But it can also include relaxation exercises, tips for improving sleep and guidance for avoiding triggers.
Palliative care can also address complications such as bone disease. Osteoporosis and fractures can occur in people with SM, making treatment for bone health and learning to live with the limitations of osteoporosis potential parts of supportive care.
Support beyond physical symptoms
Living with SM affects more than physical health. Symptoms can be unpredictable and may interfere with careers, social activities and everyday routines. Research has found substantial impacts on quality of life among people with SM, from needing to work fewer hours to avoiding leaving the house because of symptoms.
A palliative care team can help people cope with these challenges while also supporting caregivers and family members. Services can involve personal and family counseling, access to support groups and caregiving assistance.
When should palliative care begin?
There is no need to wait until SM becomes advanced before considering palliative care. Someone with indolent SM and significant symptoms may benefit just as someone with more advanced disease may.
To learn more, talk to your care team about whether palliative care might be a good option for you.
Learn more about finding sources of support: “Advice for dealing with a difficult SM prognosis”
