ALS and Palliative Care
Amyotrophic Lateral Sclerosis and Palliative Care
ALS— amyotrophic lateral sclerosis—is a disease that causes nerve cells in parts of the brain and spinal cord to die. It is often called “Lou Gehrig’s Disease.” It is a progressive disease where voluntary muscle action is affected. Patients in the later stages of the disease may become totally paralyzed.
Amyotrophic Lateral Sclerosis Symptoms and Treatment—How Palliative Care Can Help
Palliative (pronounced “pal-lee-uh-tiv”) care is specialized medical care for people facing serious illnesses like ALS. The goal is to improve quality of life for both you and your family. You can have palliative care at any age and at any stage of your illness. You can also have it together with curative treatment.
Palliative care teams work in partnership with you, your neurologist and other physicians to manage your symptoms and oversee the coordination of your care. These teams are expert in managing the 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 will provide an extra layer of support. They will make sure that whatever can be well-controlled, will be well-controlled.
A common concern of people with amyotrophic lateral sclerosis 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.
How to Get Palliative Care
If you or a loved one needs palliative care, ask your doctor for a referral.
Finding a hospital with a palliative care team in your area is easy. Just go to GetPalliativeCare.org/providers for a state-by-state list. To find out if palliative care is right for you, take our quiz.