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.
There are two main kinds of advance directives:
- 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.
Make sure you discuss your wishes with your doctors, proxy, and family members -- in part so they won't try to contradict your instructions later. "The completion of a health care directive doesn't end when you sign the document and put it in a drawer," says Carol Sieger, staff attorney with Partnership for Caring. "Paint a picture about what's acceptable and not acceptable, what your personal values are, your idea of independence. What are your wishes regarding care? What do you view as quality of life? "
No matter how complete your living will, you won't be able to address all possible scenarios. "People don't have crystal balls," says attorney Charles Sabatino, counsel to the American Bar Association Commission on Legal Problems of the Elderly. "Each medical decision is unique and fairly complicated. I've never seen a directive that didn't take serious interpretation to figure out how to implement it."
That's one reason to carefully consider your choice of a proxy; Sabatino calls it "the most important decision you're going to make." Choose someone you trust implicitly but remember -- the person closest to you may not necessarily be the best option. For instance, your loving wife or grown child may be so unwilling to let you die that they'll want to resuscitate you even if you're past recovery. When you've made your choice, make sure he or she knows your philosophy about end-of-life treatment.
Because values and wishes change over time, you should revisit your advance directive every few years and certainly after a major life change, illness, or death in the family. "If you don't update your instructions periodically, people will doubt those are still your wishes," says Sabatino.
Regardless of their imperfections, an advance directive "remains the clearest and best avenue for insuring that patient wishes are honored at the end of life," says attorney and bioethicist Paul W. Armstrong. "Granted there are difficulties with them, but there should always be deep ambivalence about making end-of-life decisions."
Loren Stein, a journalist based in Palo Alto, Calif., specializes in health and legal issues. Her work has appeared in California Lawyer, Hippocrates, L.A. Weekly, and The Christian Science Monitor, among other publications.