What Are Advance Directives?
Advance directives are documents that a person can complete to ensure that health care choices are respected. An advance directive only comes into play if a person can't communicate his or her wishes because he or she is permanently unconscious or mentally incapacitated.
There are two types of advance directives: a living will and a medical power of attorney. A living will, also called a declaration or directive, lets an individual leave written instructions about the kinds of medical treatment they would or would not want to have. The medical power of attorney or health care proxy is a document appointing someone to make medical decisions for the patient.
A 1991 law called The Patient Self Determination Act requires hospitals and nursing homes to tell patients about their right to refuse medical treatment. But for many reasons compliance has been spotty. "Hospitals are largely paying lip service to this," says Peter Clarke, a professor at the University of Southern California Institute for Health Promotion and Disease Prevention Research.
Clarke, who has been studying how to change attitudes about dying, says part of the problem with diffusion is that advance directive information is handed to patients and families at "the psychologically worst moment." When a person is being admitted to a health care facility, "it's an awful, dreadful time to bring up this topic," he says. Nonetheless, this is "the moment."
A Wide Range of Wishes
Most people don't understand that a living will can reflect a broad array of end-of- life wishes, not simply a do not resuscitate order or no ventilator request. A patient may also want to decline radiation, surgery, or chemotherapy if they are in advanced stages of cancer.
People can put anything in their advance directives. One patient wrote that he wanted to have someone pray for him if he was dying. Some people list every medical intervention they do not want, while others want to make clear their request for heroic measures at any cost. A living will isn't just for people who want to avoid being sustained indefinitely on mechanical life support. It is a way to spell out personal wishes.
Through a federal grant and in collaboration with the American Association of Critical Care Nurses, Clarke and colleague Susan Evans are trying to motivate individuals to ponder end-of-life decisions and discuss them with their family, clergy, and physicians. They have prepared a home guide that walks individuals through the process of compiling a living will and deciding what medical interventions are important. Clarke and Evans also promote a wallet card that patients can carry with them, similar to an organ donor card. It states the type of advance directive a patient has, the name of the health care proxy, and the primary doctor's name who has the living will on file.
Picking a Proxy
The medical power of attorney or health care proxy is another type of advance directive. This allows a person to appoint a health care partner or agent who is legally bound to execute a patient's wishes if the individual is rendered mentally incapacitated. The proxy can be a spouse, a live-in partner, a parent, an adult child, a sibling, a nurse, or a close friend. Experts say it's important to pick an agent who will not be intimidated by medical authorities and will go to bat for you.
It's also very important to let someone know you've picked them to be your representative. There are many cases in which someone has been picked to be a health care proxy yet they have never had a conversation with the patient about their end-of-life desires.
The overall message about advance directives: Just filling out living wills will not ensure that your wishes are respected. You must also talk about them with your proxy, family, friends and health care providers. "A combination of paper and talk is the most powerful combination you can have," says Choice in Dying's Karen Kaplan.
"Advance directives are not a complete solution because wishes may change," adds Dr. Stanley Talpers, a part-time medical school professor at George Washington University Medical Center. "The only solution really is communication between the doctor and the patient. . . .We have to keep talking and listening."