July 7, 2000 -- Laws in every state have made it clear: You have the fundamental right to make a decision in advance about whether to accept or refuse medical treatment if you become gravely ill. You can exercise this right through an advance directive, a legal document that provides clear directions to physicians and caregivers about how you wish to be treated should you become unable to communicate.
According to a 1991 Gallup poll, 75% of Americans feel advance directives are a good idea, yet only 20% actually complete them. By taking the steps to prepare an advance directive before a medical crisis arises, you can make decisions thoughtfully and ensure that your wishes concerning end-of-life treatment will be honored. And remember: These directives are not just for the elderly. Illness and accidents in particular befall younger people as well.
If you or your child has Pompe disease, it's important to know that each case is different, and that doctors have treatments to help manage it.
Pompe disease happens when your body can't make a protein that breaks down a complex sugar, called glycogen, for energy. Too much sugar builds up and damages your muscles and organs.
Pompe disease causes muscle weakness and trouble breathing. It mostly affects the liver, heart, and muscles. You might hear Pompe disease called by other names such as GAA...
A living will tells your health care providers what kind of medical care you want to receive -- or have withheld -- if you become critically ill and are unable to communicate your wishes. It can contain general statements of philosophy as well as more specific instructions detailing your desires under various conditions.
A medical power of attorney, or proxy, names another trusted person as a decision-maker for you if you become unable to make your own decisions.
Requirements for advance directives vary from state to state, so it's important to check before you write one. You can use a lawyer to help you draft your directive or do it on your own. You can obtain free, state-specific, do-it-yourself forms from Partnership for Caring, a nonprofit group that invented the living will in 1967 and counsels people about end-of-life issues. You can reach them at 1-800-989-9455 or online at http://www.partnershipforcaring.org.
Be certain to have your directive witnessed or notarized, or both, according to your state law. Keep the original in your personal files and give copies to your family members, any proxy, and all your physicians. Ask your doctors to have it placed in your permanent medical record. And keep a card in your purse or wallet naming your proxy and indicating that you have an advance directive and where it can be found. If you haven't written an advance directive and are hospitalized, you should know that hospitals are supposed to ask you if you want to write one and should also allow you to enter a do-not-resuscitate (DNR) order into your medical record.