Amyotrophic Lateral Sclerosis (ALS) - Topic Overview
Palliative care is a kind of care for people who have a serious illness. It's different from care to cure your illness. Its goal is to improve your quality of life-not just in your body but also in your mind and spirit.
You can have this care along with treatment to cure your illness. You can also have it if treatment to cure your illness no longer seems like a good choice.
Palliative care providers will work to help control pain or side effects. They may help you decide what treatment you want or don't want. And they can help your loved ones understand how to support you.
If you're interested in palliative care, talk to your doctor.
What decisions will you face as ALS progresses?
If you or a family member has ALS, learn as much as you can about the disease and how to take care of it. How much treatment you want for the problems caused by ALS is a personal choice that only you and your loved ones can make. Your values, wants, and needs are important things to think about as you make choices about your care.
As ALS symptoms get worse, you may have to choose which treatments you want for issues like breathing and eating problems. For example, would you consider using a machine to help you breathe if your breathing problems become severe? Do you want a feeding tube placed in your stomach if you are losing weight, unable to get enough calories by eating, or if you lose your ability to swallow?
As you make these choices, keep in mind that what's right for one person with ALS may not feel right for another. It's also okay to revisit your choices throughout the course of the disease. You may change your mind over time. Be sure to talk about your treatment options and share your concerns with your doctor.
You may want to put your health care choices in writing. This is called an advance directive or a living will. It gives you control over your own medical care when you can't make decisions or speak for yourself. You may also want to choose a friend or family member to speak for you. This is called a durable power of attorney. Making these plans ahead of time will help make sure that your health care choices are followed.