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Questions and Answers on the Will to Live


 
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What is the Will to Live?

The Will to Live is a legal document that you can sign which:

1) names someone to make health care decisions for you (your "health care agent") if you develop a condition that makes it impossible for you to speak for yourself (become "incompetent"), and

2) makes clear (in the form of written instructions to your health care agent) what medical treatment you would want if you can no longer speak for yourself.

Why Should I Sign a Will to Live?

To lessen the real and growing danger that you may be starved or denied necessary medical treatment when you cannot speak for yourself.

It used to be that most doctors, believing in the Hippocratic Oath, generally saw their purpose as saving life. Except in extreme circumstances, they would provide life-saving medical treatment, and they would always give their patients food and water. It also used to be that courts recognized a presumption for life, and saw their duty as protecting the lives of those who could not speak for themselves.

Today, however, many doctors accept a "quality of life" ethic. If they believe someone will have disabilities that make that person's life have too poor a quality, they will do everything they can to deny life-saving treatment and even food and water so the person will die. Today, also, the courts and laws of most states, instead of recognizing a presumption for life, have in effect created a presumption for death for people who cannot speak for themselves when they have significant disabilities.

By signing a Will to Live you help to protect your own life by making clear that you would want food and water and would want life-saving treatment except in the circumstances you yourself specify.

But I wouldn't want a lot of machines to keep me alive, just prolonging the dying process.

That's why a lot of people sign "living wills." They think that they are just preventing the use of experimental or "extraordinary" treatment when they are terminally ill and about to die anyway. But you may not realize that in many states the "living will" really means:

- you may be starved and dehydrated if you cannot swallow on your own

- you will be denied life-saving medical treatment even if you could live indefinitely if you have disabilities a doctor or court think make your life not worth living.

The Will to Live will protect you from being denied life-saving medical treatment (and even food and water) in these circumstances. At the same time, the "Will to Live" would allow you, if you wish, to reject treatment that would just prolong your life briefly if you are about to die. It allows you to state exactly what you would not want.

Is there really much danger that I won't get treatment I would want?

In almost all states the law, as established by the courts or the legislature, allows someone else to cut off your medical treatment, as well as "artificially" provided food and water, if you cannot speak for yourself and have left no clear expression of your wishes.

Nor do doctors necessarily make the presumption on the side of life. Citing a number of studies, an article in the medical journal Archives of Internal Medicine concluded, "Existing evidence ... suggests that physicians' decisions for life-sustaining treatment are often inconsistent with patients' preferences." The article described a study finding that doctors often underestimate the quality of life of their patients, in comparison to the patients' own assessment.

But I trust my own doctor. Why do I need a Will to Live?

Anna Hirth trusted Dr. Allen Jay. Dr. Jay, who had cared for her for years, knew that she would want food and fluids and assured that she would get them after she became "incompetent," no longer able to speak for herself. But in 1987 a relative who had had little contact with her was able to get a California court to issue an order requiring that she be starved to death. Dr. Jay fought the order in the courts and in the press as long as he was able, but he was overruled. If Dr. Jay had been able to point to a Will to Live she had signed that specifically said she would have wanted to be fed, his chances of saving her life would have been much greater.

Remember, also, that you never know whether the doctor you trust will be the one treating you when the decisions about treatment are made. Usually, the doctors treating you when the decision is made will be specialists, not your regular family doctor. You could be on a trip, and have to be rushed to an unfamiliar emergency room. Your own doctor could be on vacation. And since this document might not be used until years from now, by that time the doctor you know and trust may have retired or moved away. A Will to Live will help protect you, whoever the doctor treating you may be.

I trust my own family. Do I really need a Will to Live if I can depend on them to make health care decisions I would want?

Having a Will to Live that specifically designates someone you trust to make health care decisions for you, and going on clearly to describe the treatment you want ensured, will greatly strengthen the hands of those who battle to save your life when you are not able to speak for yourself.

Helga Wanglie trusted her family, and when she was unable to speak for herself, her husband and children fought hard to make sure she would get the life-saving medical treatment she wanted. But the Hennepin County Medical Center in Minneapolis went to a Minnesota court to get a ruling that would replace her husband as her guardian with another person willing to authorize denial of lifesaving treatment. While there were other issues in the case (the hospital argued that regardless of the patient's wishes, it had a right to deny treatment), one of the hospital's claims was that, contrary to the statements of her husband and children, Mrs. Wanglie's own wishes were unclear. Mr. Wanglie prevailed in the court battle, but there is no guarantee that the result will be the same in other court cases.

Why should my Will to Live name a "health care agent?" Isn't it enough just to put down my wishes for treatment?

A nursing home study in the New England Journal of Medicine found that 25% of the time advance directives were not followed by the nursing home and medical staff. In almost three quarters of those cases the patients were denied treatment they had requested. The unfortunate fact is that when you cannot defend your own rights, it is relatively easy for medical personnel to ignore directions you have put down on paper unless there is somebody with the authority and willingness to fight to make sure your wishes are followed. By naming someone you trust to be your "health care agent" when you cannot speak for yourself, you increase the chance that your wish for treatment, food and water will be followed.

Both parts are important: You should name somebody as your health care agent, to make it more likely your written wishes will be followed. And you should put down your written wishes, to make it more likely your agent's statements about what you would have wanted are not questioned and challenged. The Will to Live provides for both.

What if the person I name as my health care agent isn't available when needed?

The person you name as your health care agent may be on a trip when decisions have to be made. Or--if, for example, you have named your spouse--the agent might be in the same accident that causes your own disability. That is why the Will to Live allows you to name alternate agents to serve if the primary person you name is unable or unwilling to serve.

Can I just sign a copy of the Will to Live in this handout?

No. Separate forms have been prepared for each state to comply with the differing requirements of each state's laws, such as the number of witnesses required, with the help of an attorney licensed to practice in that state. You need to get a copy of the Will to Live form for your state.

To do so, you need to use the Internet. If you don’t have Internet access, you can get access for free at most public libraries. If you’re uncomfortable using a computer, ask a relative or friend to do it for you.

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