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Understanding Your Living Will

What You Need to Know Before a Medical Emergency

Addicus Books, Inc.

Your Living Will: Understanding the Basics

Do you have a living will? If you don't, you're not alone. Unfortunately, approximately 80 percent of Americans don't have one. Yet, drafting a living will is one of the most important actions you will ever take. It can impact your life as well as the lives of everyone you hold dear. In fact, your decisions, as reflected in your living will, may very well determine whether your life continues after a medical emergency, and if it does, with what quality of life.

Most of us are familiar with living wills as they relate to end-of-life issues. Ideally, in the face of a terminal illness, a living will as a legal document instructs medical personnel to permit us to die naturally, rather than keep us alive indefinitely through artificial means. Having a living will brings us peace of mind — we know we've put forth our wishes for our medical care, and we feel relieved that the responsibility of making difficult treatment decisions will not fall on the shoulders of our loved ones.

Terri Schiavo Case

In recent years, no case has driven home the importance of having a living will more effectively than the news-making experience of Terri Schiavo and her family. In 1990, when Terri was twenty-six years old, she suffered massive brain damage after she experienced spontaneous cardiac arrest at her home. She was later determined to be in a persistent vegetative state (PVS) with little chance of recovery. She had no living will and no durable power of attorney for health care, which meant she had not legally chosen another person to speak on her behalf if she was unable to communicate her own wishes.

Her husband, Michael Schiavo, who was Terri's guardian under Florida law, sought to remove the feeding tubes that sustained her life. Terri's parents opposed the request and sought to become her guardians. The legal battle continued for years, until 2005, when the courts decided in favor of her husband, ruling that the feeding tube should be removed. Terri Schiavo died thirteen days after the tube was removed.

The Schiavo story ignited nationwide debates over end-of-life issues, from the highest reaches of the federal government to family dinner tables. There is one certainty in this story, however. If Terri Schiavo had prepared a living will or had assigned a durable power of attorney for her health care, it would have been clear what her wishes were regarding prolonging her life through the use of a feeding tube. Her family's years of mental anguish and conflict could have been avoided.

Because of the Schiavo case, interest skyrocketed in having a living will and making it available to loved ones and medical personnel. Six weeks after Terri Schiavo's death, the U.S. Living Will Registry, which stores living wills and makes them available to hospitals on a secure Internet site, reported an increase in Web site visitors from 500 a day to 30,000 a day. Still, it's estimated that only about 59 million Americans, or 20 percent of the population, has living wills.

Definition: Living Will

A living will is a legal document in which patients are able to state in advance their desire to receive, or to withhold, life-support procedures when they are permanently unconscious or terminally ill and unable to make informed decisions. This document is a written request that life is to be or is not be prolonged by artificial means when death becomes inevitable.

Your living will tells health care workers what treatments you want and expect them to perform. It is intended to help avoid any confusion about whether you want every effort made to save your life, or whether you wish to die naturally if there is no chance of recovery.

A living will can also be called an advance directive for health care. An advance directive is simply a written statement that expresses a person's wishes in advance. The laws regarding living wills vary from state to state.

Note that your living will has no relationship to your last will and testament. Your living will has nothing to do with your property and will do nothing to distribute your property if you should die. Your living will should not create any relationships between your health care and your property, because conflicts can arise when decisions regarding your health care are combined with the disposition of personal property.

Why Have a Living Will?

A living will helps protect your right as a patient to accept or decline care. For most of us, there is one key reason for having a living will: peace of mind. Having an effective living will means you know that medical personnel will have a clear understanding about the treatment you wish to receive if you are unable to communicate. You can have additional peace of mind knowing that if you should face a life-threatening medical emergency your family will not have to go through the painful process of piecing together what they believe would be your wishes for medical treatment. This document can be especially helpful if loved ones should disagree about your course of treatment.

Does Your Living Will Express Your True Wishes?

In a perfect world, your living will would do exactly what you expect it to do if you are unable to make decisions for yourself. For example, if it's clear you cannot recover from an illness, rather than being kept alive on a ventilator for years, your living will may call for doctors to let you die.

In the real world, however, the right course of action for medical personnel may not always be so clear cut, and your living will may not express your true wishes. Let's say you have instructed in your living will that doctors let nature take its course, rather than hook you up to a ventilator for years. However, being on a ventilator only temporarily — for a few days — might be long enough for you to recover and return to your normal life. Consequently, you may not want your living will to prevent such a measure from being taken.

This is one example of why it is crucial that you clearly understand the provisions of your living will. It is possible that the document contains instructions that, if misinterpreted, could result in your being allowed to die when, in fact, you would wish to be saved. The following is an example of the best of intentions on everyone's part gone awry.

Case A

A sixty-five-year-old woman with congestive heart failure was taken to a hospital emergency room when she began having trouble breathing. Her heartbeat was irregular and her lungs had begun to fill with fluid. Shortly after being admitted to the intensive care unit, her heartbeat became dangerously irregular.

The woman had a living will. Like many living wills, it called for no heroic measures to save her life. Her biggest fear was being kept alive "artificially" for years by being hooked to a ventilator. Accordingly, her living will stated that she did not want to be placed on a ventilator. She did not want CPR; nor did she want defibrillation, electrical shock intended to put the heart back into a normal rhythm. She wanted only drug treatment. In medical terms, the drug-only treatment made her a "Chemical Code."

The woman went into cardiac arrest, and her physician ordered defibrillation, but he was told by family members that her living will allowed for treatment with drugs only. As a result, the physician ordered only a single round of medications. The woman died a few minutes later.

This woman did not realize that her life might be saved with only short-term heroic efforts — such as defibrillation. No one had ever explained to her that her decision to use only medications, with no other treatment, might be ineffective. No one had told her that even if initial treatment did require being attached to a ventilator, the ventilator may be needed only for a few days. And finally, no one had explained to her that her living will could name a relative to decide when to disconnect a ventilator if her condition did not improve.

Like so many of us, this woman didn't have a clear understanding of the choices about medical care needed to draft a living will. But this doesn't have to happen to you. You can draft a living will that makes sure your wishes for health care are executed precisely the way you want them.

Support Your Living Will with a Health Care Power of Attorney

Even when you have a living will, it's important to also have a health care power of attorney, also referred to as a medical power of attorney. This is a document, another type of advance directive, that names the person you choose to make medical decisions if you become mentally or physically incapacitated. The person you choose to represent you is often called a health care proxy, or a health care surrogate decision maker, oran attorney-in-fact. The health care power of attorney is a separate document and is not part of your living will; however, in some states they can be combined.

Understanding the Terms

Health care power of attorney is a legal document. However, you may also hear the term used when referring to a person — for example, "She is my health care power of attorney." Since the term refers to a legal document, it would be technically correct to state, "She holds my health care power of attorney." Still, the term is often used to refer to both a document and to a person.

Similarly, there is often confusion over the meaning of the term "health care proxy." Many of us use this term, referring to a person. However, "health care proxy" is also legally defined as a document — the same as the health care power of attorney.

It's also important to understand that a health care power of attorney is different from a durable power of attorney. This document names an agent, whom you designate, to make decisions for you regarding your property, finances, and assets if you become unable to make them yourself. Some states, however, allow the durable power of attorney to include a health care directive.

As part of good planning, it is recommended that you have all three documents — a living will, a health care power of attorney, and a durable power of attorney.

Why Do You Need a Health Care Power of Attorney?

It is virtually impossible for a living will to cover every possible health condition that may arise. Further, your living will becomes active and provides guidelines for how you want to be treated medically only if you are terminally ill and cannot speak for yourself or in a vegetative state. However, what happens if you are not terminally ill, but should become temporarily unconscious or unable to communicate? In such a case, your health care proxy could speak on your behalf. He or she should be able to provide answers about your health care wishes. We tend to associate living wills and health care proxies with end-of-life issues; however, most medical emergencies do not occur only at the end of life. Otherwise healthy people of all ages also have medical emergencies. The health care power of attorney serves as a backup measure, giving health care workers someone to contact in case your living will does not answer their questions.

Here's an example of how a health care proxy can play an important role in your health care. Let's say your living will indicated that you were willing to be connected to a ventilator, but then your condition worsened, and it was going to be necessary to keep you attached to the machine for a long period of time. In such a case, your health care proxy could meet with your physician to discuss whether you would want to be disconnected from the ventilator under these circumstances. Or, take the example of an elderly woman who has dementia and is brought into an emergency room after having a heart attack. She would not be mentally competent enough to tell doctors how aggressively she wished to be treated. In such a case, the health care proxy could convey the woman's wishes to the medical staff.

Because you never know when these questions or unpredictable events will arise, you need a health care proxy to help carry out your wishes. Your health care power of attorney document outlines the responsibilities of the health care proxy, and he or she can work only within the boundaries of your living will; the proxy is not allowed to go against your wishes. Your health care power of attorney will specifically state that your proxy is to act in agreement with your wishes.

Your proxy should also be able to confer with your doctor to put your wishes into effect if your medical condition changes. Your health care proxy also has the authority to refer your case to a medical ethics committee or change doctors if your proxy feels that health care workers are not following your stated wishes. Your attending physician can also call for an ethics consultation if there's a disagreement with your health care proxy. An attending physician is the doctor who has the primary responsibility for your care. In many cases, this is your family physician, but at times it may be an emergency room physician, a critical care physician, or a trauma physician.

Your health care power of attorney document can give your proxy the authority to hire or fire medical personnel on your behalf or allow you to be admitted or discharged from a health care facility. Your health care proxy is not responsible for your medical bills or for any distribution of your property in the event of your death.

Having a health care power of attorney can save your family money and heartache. If you have not named a health care power of attorney, and a health care decision needs to be made on your behalf, your family may have to go to court and ask to have someone appointed as your health care power of attorney or as your legal guardian.

Only a court can officially appoint a legal guardian. Although a health care power of attorney is not a legal guardian, he or she has the same power as a guardian. If you specify that the individual named as your health care power of attorney is your guardian, the court will likely respect your decision.

In the controversial Terri Schiavo case, her husband was her guardian under Florida law; however, her parents asked the court to name them as guardians instead. Ultimately, her parents lost in their efforts to be named guardians.

The health care power of attorney document is not a complicated one; you may find documents online that are effective in your state. Still, be sure to have any such form approved by your attorney.

Choosing a Health Care Proxy

Choosing the right person to be your health care proxy is important because he or she will be responsible for making decisions for you in case you are unable to communicate, even if you may not be terminally ill or permanently unconscious. Many prefer to choose spouses.

Your proxy should be someone who will give top priority to your wishes and act on your behalf. You will want to choose someone who is familiar with your living will and your medical condition, and who is comfortable discussing your living will and your medical treatments with health care workers. It can make your proxy's job easier if he or she agrees with your decisions. A spouse can be a good choice, since he or she will be familiar with your medical conditions and with your health care decisions. Many people choose their adult children, if the children are emotionally able to handle the stress of serving as health care proxy. Choosing a completely neutral person to be your proxy is another way to ensure your peace of mind in case your living will and health care power of attorney should become active.

It is a good idea to name an alternate proxy as well, in case the first person you choose is not available. If you do not choose a health care proxy and a court becomes involved for any reason, the court can appoint a guardian of its choosing for you.

Choosing Someone with No Financial Interests

You may wish to choose as your health care proxy, someone who is not making financial decisions for you, has no financial interest in your physical condition, who has no responsibility for your medical bills, and no role to play in the distribution of your property if you die. A proxy with financial involvement in your medical treatment could create a conflict of interest, even among the most trustworthy individuals. If your health care proxy stands to gain from your prolonged unconsciousness, your death, or any changes in your medical condition, your treatment wishes may not be their top priority for your proxy. This point is driven home by the following example.

Case B

A sixty-eight-year-old male patient, an alcoholic and a life-long smoker, reports often to the emergency room for care. He has a run-down apartment where his son and daughter check on him. The patient was sent to an assisted care facility, but after about a month his family moved him back to his apartment. He was later sent back to the assisted care facility, only to be returned again to his apartment.

At one point, the patient came to the emergency room with his grandson, who told the staff that the man's son and daughter were dividing the patient's Social Security check. They received the check only if the patient was at home; if the patient was in the assisted care facility, the facility received the check. The son and daughter had been taking the patient back to his apartment so that they could continue getting his check.

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Excerpted from Understanding Your Living Will by Ferdinando L. Mirarchi. Copyright © 2006 Ferdinando Mirarchi, D.O.. Excerpted by permission of Addicus Books, Inc..
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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