Have you ever thought about what would happen if a serious illness or medical emergency left you unconscious? How will doctors know what treatments you want, or don't want? Who would communicate your wishes to them?
Unless you have a living will or health care proxy — documents known as advance caredirectives — important medical decisions may be left to a physician or others who are unaware of your values, beliefs, or preferences. That's why everyone over age 18 should have a living will or health care proxy.
The two types of advance care directives work in different ways. A health care proxy allows you to appoint someone as your health care agent — a person who will convey your wishes to medical personnel if you're unable to communicate. A living will lets you specify in writing what you want done in certain circumstances.
People sometimes worry that signing one of these documents means giving up control over their medical treatment. But that's not how they work. As long as you're able to make and communicate your decisions, your word supersedes anything you've written or said to others.
The health care proxy
In this document, you name a person to make health care choices for you if you can't make the decisions yourself. Without a health care proxy, that job will likely fall to your relatives. For many people, this isn't a problem. But unless you feel close to your legal next of kin, you may not want decisions about your health care in his or her hands.
It's best not to appoint more than one agent (and in many states it's illegal to do so), because all of them would need to agree on every decision. But do appoint an alternate agent in the event your first agent is unavailable when needed. You can also instruct your agent to consult others.
Your health care agent is legally obligated to make decisions that she or he thinks you would make. That's why it's important to be as specific as possible with your agent about medical treatments you may or may not want, your religious or spiritual beliefs, and your preferences in situations that might arise. You can't anticipate everything, so make sure you feel absolutely comfortable allowing the person you choose to decide about matters you haven't specifically discussed.
What's in a living will?
If you don't know anyone who would make a good health care agent for you, don't choose one. Filling out a state-specific living will is better than appointing someone who might not carry out your wishes. A living will provides a written record that can guide your doctors and loved ones in caring for you. In many instances, it's used to determine how aggressive your medical treatment will be.
Living wills generally ask about the following medical procedures:
Artificial nutrition and hydration (tube feeding): This procedure involves placing a tube in a vein, the stomach, or the upper intestine when a person is unable to eat and drink. People who reject tube feeding often do so because of the discomfort or because tube feeding may lead to other invasive procedures.
Cardiopulmonary resuscitation (CPR): CPR can be used in an attempt to save the life of a person who has gone into cardiac arrest. Toward the end of life, the chance of success is very low, and CPR can cause injury. Some people with terminal illnesses who have been resuscitated this way say they wish they hadn't been.
Defibrillation: An electric shock may restart the heart when it fails. The shock causes the body to jerk, although the person is usually unconscious and doesn't feel it. Some people who are sick or dying decide to forgo defibrillation because they feel it's "too much."
Mechanical ventilation: A ventilator or respirator (sometimes called a "breathing machine") forces air into the lungs when a patient can't breathe adequately on her own. A tube attached to the machine is inserted into the nose, mouth, or throat and passed into the trachea (windpipe). Because of the extreme discomfort, a person on a ventilator requires high doses of sedatives and thus is not fully conscious. People decline this procedure for many reasons. They may not want their families to see them in an incoherent state, hooked up to a machine. Many simply don't want to spend what may be their last days lying in a hospital bed on life support.
Pressors: These are medications, delivered through an intravenous tube, that raise blood pressure. Pressors are generally used only for the sickest patients. Some people feel that if their condition is that severe, they'd prefer not to have any intervention.
Sharing your health care preferences
After your agent, your doctor is the most important person to talk to about your living will or health care proxy. She or he can also provide you with information about how various treatments might affect you. Schedule an appointment specifically for this purpose, or arrange for extra time at your next visit. Make sure your doctor is aware of the contents of your advance care directive and agrees to find a clinician to comply with any requests that she or he finds problematic. Also, be sure your physician knows your preferences about pain management.
It's important to define any terms in your health care proxy or living will that could be open to interpretation, such as "life-threatening," "short period of time," "severe disease," "end-stage condition," and, especially, "quality of life." In a study reported in the November 1, 2003, British Medical Journal, a group of doctors given a hypothetical living will and patient story came to very different conclusions about what should be done. Clarifying terms, the authors suggest, can help everyone involved better understand and act on patients' wishes.
Once you've completed your advance care directive, keep the original and ask your doctor to keep a copy in your medical file along with his or her notes about the conversations you've had. If you have a health care agent, be sure his or her contact information is in the file and kept current.
July 2005 Update