Palliative Care for LEMS

Lambert-Eaton myasthenic syndrome can lead to a number of debilitating symptoms. The condition is often accompanied by small cell lung cancer. If you have LEMS, palliative care may be able to help reduce your symptoms and improve your overall quality of life while undergoing treatment.

What is palliative care?

Palliative care focuses on alleviating symptoms as well as increasing the quality of life for those with a serious illness like LEMS. The care team works with the patient and their regular doctors to make sure the patient’s treatment desires are being honored. They also provide support for the patient and family members to help decrease stress and ensure needs are being met.

Palliative care can be provided at any stage after diagnosis and while the patient is still receiving treatment. The patient can receive palliative care at a number of different locations, including nursing homes, hospitals, and outpatient clinics, or at home.

Who makes up a palliative care team?

A palliative care team is usually a multidisciplinary team made up of a number of different medical professionals and support personnel. Specialized doctors and nurses will help to make sure the patient’s symptoms are under control. The team may also include chaplains, nutritionists, social workers, and therapists to help improve the patient’s quality of life.

Why might I need palliative care if I have LEMS?

LEMS can lead to muscle weakness as well as a number of autonomic nervous system symptoms, which can decrease quality of life. Palliative care can help control and potentially reduce your symptoms and improve your well-being, especially if you are also undergoing cancer treatments, which lead to many symptoms on their own.

How can palliative care help me?

Palliative care can provide you and your family with a number of different services. These include symptom management, help with deciding on your treatment and future plans in line with your goals, and psycho-social support.

Controlling symptoms

Muscle weakness is one of the primary symptoms of LEMS. A palliative care team may treat you with 3,4-diaminopyridine (DAP) to help you with weakness and potentially reduce some symptoms of autonomic dysfunction such as dry mouth or erectile dysfunction.

The palliative care team may also help with other symptoms such as dyspnea (trouble breathing), pain, fatigue, nausea, constipation, loss of appetite, and sleeping difficulties, which can all occur due to autonomic dysfunction or be caused by LEMS or cancer treatments.

Matching treatment to goals

The care team can help you understand your treatment options and their financial implications. They can also help you figure out your goals so as to make better decisions about your treatment. Finally, they can work with the rest of your medical team to ensure that your wishes are honored.

Providing psycho-social support

Treatment of severe diseases like LEMS can put a lot of stress and anxiety on a patient and their family. The care team can help you and your family deal with any negative emotions you may be having. They can also assist with setting up activities to increase your well-being, such as a book clubs or outings to events.

Last updated: Jan. 11, 2021

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