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What are advance directives?

"Advance directive" is a general term that applies to two kinds of legal documents. The two basic types of advance directives (which may be called by different names) are:

1. living wills

2. durable powers of attorney for health care

Patient Self-Determination Act

Beginning December 1, 1991, the federal Patient Self-Determination Act, also called "PSDA", requires all hospitals, nursing homes, health maintenance organizations, hospices and home-health care companies that receive funds from Medicare or Medicaid to question and instruct all patients regarding advance medical directives (AMDs).

The health care provider is expected to ask all patients if they have written (a) a living will; (b) have named someone else to make medical and health care decisions for them if they are unable to make decisions for themselves. Such an instrument is typically known as a durable power of attorney for health care.

Traditionally, most medical providers have been reluctant to question patients about AMDs at the time of admission out of fear that such questioning might appear offensive, insensitive or inappropriate. It may also have the unintended effect of making the patient pessimistic about the prognosis of the treatment.

Under the Patient Self-Determination Act, the health care organizations are required to maintain written policies and procedures to ensure that each individual receiving the medical care at the facility receives written information about the individual's rights under state law to make decisions concerning such medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate advance directives. The patient should also be given the written policies of the provider or organization respecting the implementation of such patient rights.

The organization is required to document in the individual's medical record whether or not the individual has executed an advance directive. The organization may not condition the provision of care or otherwise discriminate against an individual based on whether or not the individual has executed an advance directive.

The purpose of these documents is to let you give instructions about your future medical care, in the event that you become unable to speak for yourself due to serious illness or incapacity. Each state regulates the use of advance directives differently.

What is a living will?

A living will is a type of advance directive in which you put in writing your wishes about medical treatment should you be at the end of your life and unable to communicate. Different states call this type of document different things: for example, it may be called a "directive to physicians," "health care declaration," or "medical directive." Regardless of what it is called, its purpose is to guide your family and doctors in deciding how aggressively to use medical treatments to delay your dying.

Your state law may define when the living will goes into effect, and may limit the treatments to which the living will applies. You should read your state's document carefully to be sure that it reflects your wishes. You can add further instructions or write your own living will to cover situations that the state document may not address. Your right to accept or refuse treatment is protected by constitutional and common law. Thus, even if your state does not have a "living will law," it is wise to put your wishes about the use of life-sustaining treatments in writing.

What is a durable power of attorney for health care?

A durable power of attorney for health care is a document that lets you appoint someone you trust to make decisions about your medical care if you cannot make those decisions yourself. This type of advance directive may also be called a "health care proxy" or "appointment of a health care agent." The person you appoint may be called your health care agent, surrogate, attorney-in-fact, or proxy.

The person you appoint through a durable power of attorney for health care is authorized to deal with all medical situations when you cannot speak for yourself, not only end-of-life decisions. Thus, he or she can speak for you if you become temporarily incapacitated—after an accident, for example—as well as if you become irreversibly ill.

Generally, the law requires your agent to make the same medical decisions that you would have made, if possible. To do this, your agent should examine any specific statements you made, your religious and moral beliefs, and your values in general. If your wishes about a particular medical decision are not known, your agent must act in your best interest, using his or her own judgment.

Some states let you appoint an agent within the living will form. This is different from a durable power of attorney for health care, because an agent appointed in a living will can only make decisions about using life-support treatments, and only if you are in one of the medical conditions specified in the state law (such as "terminally ill," "permanently unconscious," or "imminently dying").

Why do I need an advance directive?

Advance directives give you a voice in decisions about your medical care, even when you are unconscious or too ill to communicate. As long as you are able to make and express your own decisions, you can accept or refuse any medical treatment. But if you become seriously ill, you may lose the ability to participate in decisions about your own treatment.

Research has shown that 80 percent of us will die in a medical facility such as a hospital or nursing home, where medical technology can now prolong life as never before. The quality of that life, however, may be greatly reduced. As a result, many patients' families and caregivers face difficult questions about how much technology to use when the patient cannot get better, but dying can be prolonged. That means most of us will face a decision about whether to use life-sustaining medical treatments at the end of our lives. If we can't speak for ourselves at that point, other people will have to make that decision for us.

Making decisions that can result in a patient's death is difficult and painful for loved ones and caregivers. If your loved ones don't know your wishes the decision is even harder to make. Without information about your wishes, serious conflicts can arise between your family and medical caregivers or within the family itself..

Without clear evidence about a patient's wishes, care providers will often continue treatment, not only because they are trained to do that but also to protect themselves from any liability. Even if your loved ones believe that you would not want the treatment, they may not be able to stop it without some record of your wishes.

Providing your loved ones and caregivers with the information they need to make medical decisions for you is a great gift. It can spare them emotional anguish and conflict. Remember, it's up to you to take the initiative and express your wishes. Your family or doctor are not likely to raise the issue for you.

Why bother with an advance directive if I want my family to make any decisions that have to be made for me?

Depending on your state's laws, your family may not be allowed to make decisions about life support for you without written evidence of your wishes. Although doctors usually turn to the next of kin to make most decisions when patients can't speak for themselves, a decision to withhold or stop life support is often handled differently because of its final nature. Some state laws do permit family members to make all medical decisions for their incapacitated loved ones. But other states require clear evidence of the patient's own wishes.

Even in states that do permit family decision making, you should still prepare advance directives for two reasons:

• you can name the person you are most comfortable with to act as your decision maker (who may not be your next of kin), and

• your advance directives will make your wishes known.

Without knowledge of your wishes, your loved ones may be reluctant to make any decision.

We've heard many families express their thankfulness that their loved ones prepared advance directives. It spared them the anguish of having to guess what to do, when they were already dealing with the pain of illness and loss.

Should I prepare a living will and also appoint an agent?

Yes. You can best protect your treatment wishes by having both a living will and a health care agent, because each offers something the other does not.

Benefits of appointing a health care agent

Medical decision making is rarely simple. Treatment decisions have to be made in response to changing medical conditions, and medical situations often unfold unpredictably. Decision making often involves weighing benefits and drawbacks, and even evaluating the odds for success or failure.

The person you appoint as agent can respond flexibly to changes or unanticipated situations in a way that no document can. In addition, you are legally authorizing that person to make decisions based not only on what you expressed in writing or verbally, but on knowledge of you as a person as well. Your agent can take into account other concerns you may have, such as the effect of your illness on your family, the quality of life that matters to you, and even any concerns you may have about finances.

Living wills address end-of-life decisions only. An agent appointed through a durable power of attorney for health care usually can make health care decisions in a wider range of situations than those involving end-of-life care.

Benefits of having a living will

If your agent has to decide whether medical treatment should be withheld or withdrawn to permit you to die, your living will can reassure your agent that he or she is following your wishes in these most difficult decisions. In addition, if the person you appointed as agent is unavailable or unwilling to speak for you, or if other people challenge the decision not to use life-sustaining treatment, your living will can guide and direct your caregivers.

Thoughtfully prepared, a living will can be a valuable support to appointing an agent; similarly, your agent can ensure that the spirit, not just the letter, of your living will is followed.

What if I do not have anyone to appoint as my agent?

If you have no one to appoint as your agent, it is especially important that you complete a clear living will. Be sure that your loved ones, your doctor and anyone else who may be involved with your health care has a copy of the completed document and understands your wishes about medical treatments when you are at the end of life. If you are admitted to a hospital or long-term care facility, you should have the living will made a part of your medical record.

When will my advance directives go into effect?

Your advance directives become legally valid as soon as you sign them in front of the required witnesses. However, as long as you are able to make your own decisions about your medical care, your advance directives will not be used.

Each state sets its own guidelines for when advance directives become operative. The rules may differ for living wills and medical durable powers of attorney.

Durable power of attorney for health care

Most durable powers of attorney for health care become operative when your physician concludes that you are unable to make your own medical decisions. Many states have an additional requirement that applies only to decisions about life support: before your agent can refuse life-sustaining treatment on your behalf, a second physician must confirm your doctor's assessment that you are incapable of making treatment decisions.

Living will

In most states, before your living will can be acted on, two physicians must certify that you are unable to make medical decisions and that you are in the medical condition specified in the state's "living will law" (such as "terminal illness" or "permanent unconsciousness").

Will my advance directives be honored in an emergency?

No. In an emergency your consent to treatment is presumed. Emergency medical technicians are not physicians and in most states they are not permitted to decide whether it would be appropriate to honor an advance directive. Instead, they are required to do what is necessary to stabilize the patient for transfer to a hospital. Once the patient's condition is evaluated there, the advance directive can be used if the situation calls for it.

Emergency medical technicians cannot honor living will wallet cards, "mini-wills," or similar instruments. Some states and localities do permit emergency Do Not Resuscitate (DNR) orders known as "non-hospital DNR orders." These are usually written by a doctor on a special form. (Your state's department of health or local Emergency Medical Service can tell you if such orders are honored in your area.)

Will my advance directives be honored in another state?

The answer to this question varies from state to state. Some states do honor advance directives from another state; others will honor out-of-state documents to the extent they conform to the state's own law; and some states do not address the issue. At bottom, you have constitutional and common-law rights to accept or refuse treatment that may be even broader than your rights under any state law. A state would probably have to honor an advance directive that clearly expressed your treatment wishes.

If you reside in, or receive medical care in, more than one state we recommend that you complete the advance directives for all of the states involved. It will be easier to have your advance directives honored if they are the ones that the medical facility is familiar with.

Do I need a lawyer to prepare advance directives?

No. You can get state-specific forms, at no charge, from Choice In Dying. Included are instructions on how to complete them correctly. Your local hospital, local bar association, or the state office on aging may provide them as well. There are also generic (that is, not state-specific) forms available, but you should only use these to supplement the state-specific forms.

Read all of the instructions carefully. Be sure that your document is witnessed properly and that you have included all of the necessary information. It might be wise to ask someone else to look over the forms for you, to be sure that you have filled them out correctly.

Choice In Dying also offers an optional service, the Living Will Registry, which includes review of your advance directives to ensure their validity, and computerized filing so your documents will be available in case of a medical crisis. To learn more about the Registry, contact Choice In Dying.

Choice in Dying, Inc. is a national not-for-profit organization dedicated to serving the needs of dying patients and their families. You can reach CID at 200 Varick St., New York, NY 10014-4810; (212) 366-5540.

Appointing a Health Care Agent

Who can serve as my agent?

Your agent can be almost any adult whom you trust to make health care decisions for you. It can be a close family member or a good friend who is willing to assume that responsibility on your behalf.

The important thing when appointing an agent is to make sure he or she understands your wishes about the use of medical treatment, and is willing to respect them and to be assertive if necessary. Not everyone is comfortable making these kinds of decisions, and your agent may have to be persistent in order to have your wishes respected. Therefore, it is essential that you talk to the person before appointing him or her, even if it is your spouse, adult child or other family member.

Who cannot serve as my agent?

Under most state laws, you cannot appoint your attending physician as your agent, and in some states, your agent cannot be any health care worker caring for you in a medical facility.

Can I appoint more than one agent?

You should not (and in many states you may not) appoint more than one person to act at the same time, because it can cause conflicts and confusion. The result may be that no decision is reached.

Parents sometimes wish to appoint all of their adult children to act together as the agent, to avoid "playing favorites." Instead, you could ask your children to decide among themselves who should be the agent. Practical considerations such as location often make the answer obvious; sometimes one is more willing to take on this role than another.

You can appoint one or more alternate agents. If the first person you named is unwilling or unable to serve—for example, if he is ill—then the next one is called upon to act as your alternate agent, and so on down the list of people you name as alternates. Remember, in many states, appointing more than one person at a time can make the appointment invalid.

What should I tell my agent?

Your agent needs to know when and how aggressively you would want medical treatment applied.

For example, if you had a massive stroke, would you want to receive aggressive treatments (such as mechanical ventilation, antibiotics, tube feeding), for a time, but have them stopped if there were no improvement? What kind of treatment would you want if you were in a permanent coma or persistent vegetative state: a ventilator? Tube feeding? Comfort care only? What are your views on artificial nutrition (tube feeding)? Do you want to receive it no matter what your medical condition? On a trial basis? Never? If your heart stopped, under what circumstances would you want doctors to try to resuscitate you (using CPR)?

Talking to your agent means discussing values and quality of life issues, as well as treatments and medical situations. Since there may be situations that you could not anticipate, your agent may need to base a decision on what he or she knows about your values and your views of what makes life worth living. These are not simple questions, and your views may change. For this reason, you need to talk to your agent in depth and over time.

Preparing The Forms

Must my advance directives be witnessed?

Yes, every state has some witnessing requirement. Most require two adult witnesses; some also require a notary. The purpose of witnessing is to confirm that you are really the person who signed the document, you were not forced to sign it, and you appeared to understand what you were doing. Read the forms carefully to be sure that the witnessing is done properly.

Who can be a witness?

All states require that your witnesses be adults. Beyond that, requirements vary from state to state.

Generally, a person you appoint as your agent or alternate agent cannot be a witness. In some states your witnesses cannot be any relative by blood or marriage, or anyone who would benefit from your estate. Some states prohibit your doctor and employees of a health care institution in which you are a patient from acting as witnesses. Again, read the instructions carefully to see who can and cannot be a witness.

What should I do with my completed advance directives?

Make several photocopies of the completed forms. Keep the original forms in a safe but easily accessible place, and tell others where you put them; you can also note on the photocopies the location where the original forms are kept. Do not keep your advance directives in a safe deposit box; other people may need access to them.

Give photocopies to your agent and alternate agent. If you have a living will only, be sure your doctor has a xerox copy and give copies to everyone who might be involved with your health care such as your family, clergy, or friends. Your local hospital may also be willing to file your advance directives in case you are admitted there in future.

How can I be sure my advance directives will be honored?

Simply completing advance directives will not ensure that your wishes will be honored. These documents are tools to help the decision making process. Their effectiveness depends largely on the way you prepare your loved ones and other caregivers for their use.

To best protect your treatment wishes, you should do two things:

• Take the time to think your feelings through and express them fully, so that your advance directives truly reflect your treatment wishes.

• Talk openly about your wishes with your family, your friends, and your doctor. Don't assume that they know what you would want; research shows that family's and physicians' guesses about a patient's preferences are often mistaken. Talking with the people who may have to act on your behalf ensures that they understand your wishes, gives them a chance to ask questions, and also lets you determine whether they will follow your wishes, even if your choices differ from theirs.

Medical Treatments And Your Advance Directive

What are life-sustaining treatments?

Life-sustaining treatments are medical procedures that replace or support a failing bodily function that keeps you alive. For example, a ventilator supports the breathing process; dialysis cleans the blood in case of kidney failure. They are also known as 1ife-support treatments.

Why wouldn't I want life support?

When patients have curable conditions, life support is used temporarily, and is withdrawn once the body recovers. But life support also is applied when there is little chance that the body function being replaced or supported can return. In these cases, the patient remains dependent on life support until death.

For example, a person with severe lung disease may not be able to breathe without a respirator. If that person's other bodily functions still work fairly well, she may be able to live a life that is worthwhile to her, despite her dependence on the ventilator. But if she has suffered serious brain damage, she may be permanently unconscious or severely impaired. In that case the ventilator can keep her alive, but only if she also is connected to other treatments that put nutrition into her body, fight infection, and handle her bodily waste.

Such situations require weighing the benefits of life-sustaining treatments against their burdens. Ideally, the decision to continue or stop treatment will be based on the individual's own wishes. When a patient can no longer participate in these decisions, advance directives may offer the only guide to his or her wishes.

Note: In making decisions about life support, patients or their loved ones need to know the patient's diagnosis (the exact nature of his or her medical condition) and prognosis (what is likely to happen because of that medical condition). A patient might accept a treatment if there is a good chance that it will improve his condition, but refuse it if that chance is extremely small. Patients and their appointed agents have a right to this information, and need it in order to make decisions properly. If caregivers can't provide an answer right away, find out when they will know more.

How can I learn more about the benefits and burdens of different medical treatments?

First, you should talk with your doctor or nurse. If you have a chronic or serious medical condition, your doctor should be able to tell you about life-sustaining treatments that might be especially relevant to your condition. In addition, Choice In Dying has publications that describe life-support treatments in detail.

What is CPR (cardiopulmonary resuscitation)?

CPR is not a single treatment, but a group of treatments used when someone's heartbeat and/or breathing stop. CPR tries to get the person to breathe and the heart to beat again. It may consist only of mouth-to-mouth resuscitation, or it can include pounding on the chest, or using electric shock or drugs to stimulate the heart.

Why wouldn't I want CPR?

When a person is seriously ill and near death it is not unusual for the heart to give out. This can be a more comfortable death than slowly dying from a disease or while on life-support systems. Research suggests that very ill patients who have cardiac arrest and are resuscitated in the hospital have only a very small chance of recovering enough to leave the hospital. But in current medical practice, if the doctor didn't write a Do-Not-Resuscitate order (called a "DNR") for the patient, medical personnel usually try to resuscitate no matter how futile the situation, until the heart simply won't restart.

In addition, if a person is resuscitated after not breathing for ten or fifteen minutes, she may have severe brain damage because no oxygen reached her brain. In that case, the resuscitation "succeeds" in the sense that her heart has restarted, but the patient is in a much worse condition than before her heart stopped.

Do I need to talk about specific treatments in my living will or with my agent?

Since it is impossible to know what treatments might be involved if you were terminally ill, you can't cover every one. However, you should discuss the situations in which you would or would not want the more common treatments, such as ventilators, CPR, artificial nutrition and hydration, or antibiotics. By discussing the quality of life that you find acceptable, you also offer a guide to when you might want to refuse medical treatment.

If I refuse life support, will I still receive treatment for any pain I may have?

Many people mistakenly think that by refusing aggressive medical treatments they may be refusing all medical care. This is not the case. A dying person needs medical care, but care whose goal is comfort, not cure. This is often called palliative care. It is not just pain medication, although pain control is an important part of palliative care; it also can include surgery, radiation, antibiotics, or other treatments that normally are used to cure, but in this case are used to make the person more comfortable.

Are artificial nutrition (tube feeding) and hydration different from other kinds of life-support treatment?

No. Artificial nutrition and hydration (often called "tube feeding") are life-support systems that provide nutrition and fluid to the body, in the same way that a respirator supports breathing or a dialysis machine replaces kidney function. The United States Supreme Court and the major medical associations have affirmed that artificial nutrition and hydration are no different from other types of life-sustaining treatment.

As with other life-support systems, artificial nutrition and hydration can save lives when used temporarily, until the body heals so that the person can eat and drink again. There also are people who depend permanently on artificial nutrition and hydration, and who find life to be rewarding and meaningful.

Difficulties about the use of artificial nutrition and hydration arise when patients are terminally ill or have suffered irreversible brain damage. Artificial nutrition and hydration can delay such patients' dying for a long time, but cannot change the underlying medical condition. In addition, the long-term use of artificial nutrition and hydration may cause further problems, such as pneumonia or infections. Artificial nutrition and hydration may also be uncomfortable, especially if the patient must be tied down so he does not dislodge the tubes.

Some state laws require clear evidence of an individual's wish to refuse artificial nutrition and hydration before the treatment may be withdrawn. It is wise to make your wishes clear on this point even if your state law does not require it, because of the strong emotional response that some people have to the refusal of this treatment. There are also people who, due to moral or religious conviction, believe that nutrition and hydration, even if it is supplied artificially, should never be stopped.

Is it painful to stop tube feeding?

Contrary to some claims, stopping artificial nutrition and hydration to dying or permanently unconscious patients does not result in a painful death. A growing body of evidence shows that withdrawing artificial nutrition and hydration contributes to a peaceful and pain-free death. As the body shuts down, it produces pain-blocking chemicals that it would not produce if nutrition and hydration were supplied. However, if there is any concern that the patient may be uncomfortable, pain medications can be used.

Other Questions

Once a medical treatment is started, can it ever be stopped?

Yes. There is no legal or ethical difference between withholding and withdrawing a medical treatment. If there were, people might not even try a potentially helpful treatment for once started, it could not be removed. Professional organizations such as the American Medical Association, as well as the courts, have affirmed that it is ethical to discontinue medical treatments that are not benefiting the patient. If the patient no longer wants a treatment, for any reason, providers are legally obligated to withdraw it.

In practice, though, caregivers may resist withdrawing a treatment once it has begun. A caregiver may feel she would be helping to cause death, even though the patient's condition is irreversible. Also, caregivers may be confused or misinformed about what the law requires and what constitutes ethical practice. They might mistakenly believe they cannot stop treatment, even with, clear evidence that the patient would not want it. If a physician refuses to end treatment, the patient or family should find out the reason for the refusal.

Do care providers run any legal risk by honoring an advance directive?

No. Most advance directive statutes say explicitly that providers run no legal risk for honoring a valid advance directive. No health care provider has ever been successfully prosecuted for honoring a patient's request to end treatment. Providers may run more risk when imposing treatment against a patient's or health care agent's wishes.

What if my health care provider won't honor my advance directive?

In many states, care providers can refuse to honor advance directives for moral or religious reasons. Some of those states require such a care provider to remove himself from the case, and transfer care of the patient to someone who will honor the patient's request. But in practice, a caregiver's refusal to honor an advance directive can cause real difficulties. It may be hard to find a physician or facility to which to transfer the patient.

A refusal to stop treatment that stems from a misunderstanding of the law or medical ethics may be solved by supplying the provider with the correct information. In other cases, a care provider may feel that the patient's choice conflicts with his or her professional responsibilities. Many medical facilities have ethics committees that may help to resolve disputes over patients' wishes. In extreme cases, legal action may be required.

These examples show why it is so important to lay the proper ground for your advance directive. If you know that your personal doctor is unwilling to carry out your wishes, it would be wise to change to a physician who will respect them. In addition, since conflict is possible, it is important to appoint an agent who is willing to work actively to have your wishes honored.

Remember, Choice In Dying can provide expert advice on dealing with a health care provider's refusal to honor an advance directive.

Who would make decisions about my medical care if I did Not complete an advance directive?

There is no simple answer to this question. In general, physicians consult with families when the patient cannot make decisions. But if the decision involves ending a treatment and will result in the patient's death, the family may or may not be permitted to make the decision.

In some states treatment cannot be withheld or withdrawn without clear and convincing evidence that the patient would refuse it. In other states, if the physician and the family agree, the treatment may be stopped without recourse to any outside authority (such as the courts). If there is any conflict about treatment among the family members or between the family and the physician, treatment is likely to continue.

About half of the states have passed "surrogate decision making" statutes. These laws create a decision making process by identifying the individuals who may make decisions for patients who have no advance directives. However, the person whom the law appoints to make decisions may not be the person you would want as your decision maker. Thus, it is important to name the person you do want by completing an advance directive.

Is there federal law on advance directives?

At present, there is one federal law regarding advance directives, called the Patient Self-Determination Act (PSDA). It requires medical facilities that receive Medicaid and Medicare funds to have procedures for handling patients' advance directives, and to tell patients upon admission about their rights under state law to use advance directives. The PSDA does not set standards for what advance directives must say, it does not require facilities to provide advance directive forms, and it does not require people to have advance directives. Rather, the PSDA's purpose is to make people aware of their rights.

Will pregnant woman's advance directive be honored?

Under many state statutes, advance directives are invalid while a woman is pregnant. You should check the instructions carefully to find out what your state law says. This restriction may be unconstitutional; if you wish your advance directive to apply during pregnancy, be certain to say so clearly.

If I refuse life support, will my life insurance be invalid?

No. Terminating or withholding a medical treatment is not suicide, and will not invalidate a life insurance policy. The cause of death is the medical condition, which the treatments can do nothing to reverse.

What is the difference between a "will," a "living trust" and a "living will"?

Wills and living trusts are both financial instruments; they allow you to plan the distribution of your financial assets and property after your death. In contrast, a living will deals with medical issues while you are alive. It allows you to express your preferences about your medical care at the end of life.

Wills and living trusts are complex legal instruments, and you may need legal advice to complete them. You do not need a lawyer to complete a living will.

What is the difference between a "power of attorney," a "durable power of attorney" and a "durable power of attorney for health care"?

A power of attorney and a durable power of attorney are both legal documents that let you appoint someone to make financial decisions for you. A regular power of attorney is effective while you can still handle your own finances, whereas a durable power of attorney remains valid after you have lost the ability to make financial decisions (due to Alzheimer's disease, for example).

A medical power of attorney only permits the appointed person to make medical decisions for you when you cannot make those decisions yourself. It does not authorize the person to handle your financial affairs, and normally does not empower him or her to make decisions while you can still make them.

In most states, you can appoint the same person for each of these functions, but you must use three separate documents to do so. To learn about your state's law regarding powers of attorney or durable powers of attorney, contact a lawyer. For information about medical powers of attorney in each state, contact Choice In Dying.