ALS & Palliative Care

ALS— amyotrophic lateral sclerosis—is a disease that causes nerve cells in parts of the brain and spinal cord to die, resulting in a progressive loss of muscle function.  Palliative care teams work in partnership with you, your neurologist and other physicians to oversee the coordination of your care. These teams are expert in managing the pain, symptoms and stress of your illness. They are also well-versed in navigating the complex health care system.

So as you wrestle with a disease that challenges your ability to control your body and your life, the palliative care team can offer tools and techniques to make sure that whatever can be well-controlled, will be well-controlled.

A common concern of patients with ALS has to do with the loss of function. Most people with ALS worry about how this loss will make them dependent on others for even the most ordinary tasks, such as bathing, dressing or eating. And because ALS also affects the muscles used for breathing, speaking and swallowing, it can cause physical discomfort and emotional pain. Many people with ALS also become more and more anxious about becoming wheelchair-bound in the later stages of the disease.

Your palliative care team can help you with all this and more. The team will be your sounding board and your first line of defense against any symptoms of pain, discomfort, depression or anxiety.

They’ll help you and your loved ones make both small and large decisions. They will enhance communication between you, your family and your other doctors and help you clarify your goals for care. They will also guide you through the necessary process of advanced care planning, including decisions about the use of mechanical ventilation and artificial feeding and hydration.

Evidence suggests that ALS patients who receive palliative care have improved survival compared with those who receive care only from general neurology clinics. At every stage, palliative care clears the way for you and your loved ones to enjoy, together, the best possible quality of life.