Living Wills
A simple legal document offers a measure of control at the end of life.
By Helen B. Price

From the time we are old enough to perceive ourselves as separate beings, we strive to control our physical circumstances - think of the toddler who wants up or down, prefers plums to peas, and doesn't want to take a nap.

Reaching the end of our lives does not change this basic desire. Specifically, many people abhor the thought of being kept alive through artificial means; remaining alive while in a persistent vegetative state may seem particularly awful. Contemporary laws empower people to make choices about the way their lives should end. All it takes is the understanding and implementation of a living will, a simple document that assists people in putting limits on what can and cannot be done in a terminal situation, alleviating the fear of becoming dependent on machines to live.

Living will or directive

While this document is called a "living will" in many states, Alan Kane, a partner in the Seattle law firm Preston Gates & Ellis LLP, observes that this is a misnomer. "It's not a 'will' in the sense that something of value is being left to a loved one," he explains. The term Kane recommends, one used in several states, is "directive." "A living will is one of several 'advance directives' in which [people are] able to pick and choose end-of-life treatment options that they want or don't want," says Diane Brothers, administrative clinical manager at Mary Washington Hospital in Fredericksburg, Va.

People may be confused by the connotations of "will." "You don't need an executor to carry out the terms of a living will," explains Kane. Also, you don't need a lawyer to sign a living will (although it's a good idea to have a lawyer review any legal document you choose to sign), and there are no legal costs involved. "A living will is written instructions regarding the type of care that a person would or would not want at the end of life," explains Carol Sieger, staff attorney for Choice in Dying, a Washington, D.C., organization.

While these directives are considered legal documents, "you aren't stuck with the statutory language," says Kane. "You can change or modify the document to say, 'No machines are to be used without the consent of my doctor,' or 'No machines, but do give me food and water' [referring to nutrition or hydration via tube; food and water by mouth are always given, if possible]. And you can always override an earlier decision."

State by state

While living wills are similar throughout the United States, you should be familiar with regulations in your state. In 1990, Congress passed the Patient Self-Determination Act, which requires health care institutions to tell patients in their communities about their rights, under state law, to make decisions about their medical care. These include their right to accept or refuse care and their right to make advance directives about their medical care. Advance medical directives legally bind health care professionals to act according to the patient's wishes.

Each of the 50 states has further refined and defined guidelines for various medical directives their citizens can use. Most states have reciprocal agreements. "However," says Sieger, "health care providers are used to seeing documents from their own states, and a doctor in Arizona may not be familiar with a document from Virginia. … [Even] if the document is correctly executed, it can slow things down. The doctor may have to refer the document to a legal department for review, and that takes time." Implementation is quicker and smoother if the document is executed in the state in which the patient resides.

Sieger cautions that details of advance directives also may vary from state to state. "For example, how do you define 'terminal'?" she asks. In some states, it means the patient is expected to die in a year or less. Other states dictate that living wills can be implemented only if and when death is imminent, even when life-sustaining measures are used. Still other states permit living wills to be effective under other circumstances, such as when a person is in a persistent vegetative state. "There are about five or six different definitions within the states, and people need to find out what applies in their home state," Sieger advises.

Other important documents

While advance medical directives are powerful documents, in some states they are useful only when someone is terminally ill. What happens if a sudden illness or accident leaves someone bedridden for the rest of his or her life, but not near death? Living wills may or may not apply under these circumstances, depending on state laws.

Other medical directives exist to protect people in these circumstances. A durable power of attorney empowers a person of the patient's choosing to make decisions about the treatment a patient will - or will not - receive. "The appointed agent has authority to make decisions at any time when the patient can't speak for him- or herself, not just at the end of life," says Sieger. With a durable power of attorney, your agent can take into acount not only your preferences but also information from a physician regarding prognosis, treatment, side effects, etcetera. A durable power of attorney also covers more mundane decisions, such as the hiring or firing of a private-duty nurse.

Think long and hard about bestowing such a responsibility on someone. "Usually a spouse is designated as the person to make such a decision," says Kane. "In our practice, without question, it's the spouse, if there is one." However, Kane advises, these designations must be made on a case-by-case basis. It might be better to give power of attorney to an adult child, a doctor, or even a lifelong friend - someone who knows your wishes.

"Suppose there's an elderly woman … who names her nephew who lives 500 miles away in her durable power of attorney," suggests Brothers. "She becomes seriously ill, and the hospital calls and asks the nephew, 'What should we do?' The nephew is likely to respond, 'Gosh, I don't know; I haven't seen my aunt in 20 years.'"

On the other hand, a close friend nearby who has brought lunch to the elderly woman every day "probably knows the woman's wishes, and she should have been named the decision-maker on the durable power of attorney," says Brothers.

A "do-not-resuscitate" (DNR) order is a physician's order, generally signed by the next of kin and the physician at a hospital when a patient is in a crisis situation, that directs medical personnel not to take measures to bring back a patient from the brink of death if he or she suffers a terminal event. "For example," offers Brothers, "think about a patient who is dying of a terminal illness, such as cancer, has a living will in place, and then suffers a heart attack. If a DNR order is in place, medical personnel would be instructed only to make the patient comfortable."

There are legal considerations, too. "In the state of Washington," Kane says, by way of example, "if a living will - or any other legal directive - has been followed and the patient dies, that death is not considered a suicide. And it won't void a life insurance policy either, even if the policy says otherwise," he notes.

Don't hesitate

Anyone at any age can suffer a terminal illness or a fatal injury. "Most people don't want to talk about these issues until a crisis arises, and that's the wrong time," Brothers points out. "You really need to do it ahead of need." A living will isn't set in stone: Patients can change their minds about treatment options at any time, according to Brothers - even on the way into the operating room. If you are able to speak for yourself, you can override anything previously written or said.

Once you have a directive, it's a good idea to create several "original" copies of advance directives, all with original signatures. "A safe deposit box is the absolute worst place to store these documents," Brothers insists. "Think about it - you're in the midst of a heart attack - are you going to say to the ambulance driver: 'Oh, by the way, can you swing by the bank so I can pick up my living will?' That won't work." She advises, "Give copies to your primary-care physician, family members who would gather at your bedside, and close friends."

Sieger agrees: "Give them to the people you may have appointed to speak for you if you are unable to speak for yourself; your adult children, if you have any; and close family members and friends." If, at any time, you modify your advanced directive, "be sure to notify everyone to whom you've given a copy," Sieger warns. "[Take] the old copy and give them a new one."

The most important thing a medical directive or living will can do is ensure that those surrounding a dying person know what that person wants.

"It takes the burden off the survivors," says Sieger. "When relatives are working through a decision to turn off life support, it eases [their minds] to know that they didn't actually make the decision. They were simply following their loved one's instructions, and that truly lifts a huge burden from their shoulders."