ACS :: Frequently Asked Questions

A terminal condition is an irreversible illness that in the near future will result in death, or a state of permanent unconsciousness from which the person is unlikely to recover. In most states, a terminal illness is one in which the patient will die "shortly" whether or not medical treatment is given. But state definitions vary. Examples of terminal conditions include advanced cancers, head injuries, multiple organ failures, or massive heart attacks and strokes.

In most cases life-sustaining medical treatment is anything mechanical or artificial that sustains, restores, or substitutes for a vital body function and that would prolong the dying process for a terminally ill patient. Some states have different definitions, so you may want to be sure what your state says. Life-sustaining medical treatment may include the following:

Nutrition and hydration (food and water) are not usually defined as life-sustaining unless they are given through a feeding tube or intravenous (IV) line. Comfort measures, which are medicines or procedures needed to provide comfort or ease pain, are not usually considered life-sustaining. In some states, tube feedings and intravenous fluids are considered comfort measures.

The best time to make an advance directive is before you need one! In other words, before you become too sick to make your own choices and decisions about what medical care you want to take or refuse. Young people as well as older people should think about making an advance directive. Advance directives can be changed or revoked at any time. They should be reviewed and updated if you are diagnosed with a serious illness.

It is very important that your loved ones know that you have written an advance directive and what medical care you want in certain situations. It is not possible to plan for every medical event that could happen in your life. But you can use an advance directive as a chance to discuss difficult subjects like illness and dying. Through open talks with your loved ones, you can explain what is important to you and what kind of treatments you do and do not want done. This is a good thing to do at any age. It can save your loved ones from a lot of guilt, uncertainty, and conflict in the event that decisions about your health need to be made and you cannot make them. Your loved ones can help make sure that your wishes are followed, but first they must they know and understand what you want.

If you have an advance directive and cannot make your own medical decisions, these decisions will be made for you. But these decisions will be based on the types of medical care you have outlined in your advance directive and/or by the person you chose as your agent or proxy (substitute decision-maker). It is important to make sure that your family, health care providers, and others who might be contacted know that you have an advance directive and what is in it. They also need to have a copy of the directive so that it can be used in your medical treatment.

Talk to all of your family about your advance directive. Be sure they know what you have told your proxy and your back-up proxy about your wishes if you have a health care power of attorney. Complications can arise if everyone in your family does not know about or does not support the choices you have written in your advance directive. Arguments, family conflicts, and emotional objections can sometimes lead doctors and hospitals to the "safest" route of care--aggressive treatment that can prolong death for a long time. This may not the way you would want it to be.

If you have any type of advance directive, tell people close to you that you have one and where it is kept. Give copies of your advance directive to your proxy or agent, family members, and friends who would be contacted if you become seriously ill. Do not keep your advance directive locked up where no one can find it or get to it. It is up to you, your proxy, or a family member to give a copy of your advance directive to your doctor and hospital when it is needed.

Federal law requires that hospitals, nursing homes, and other health care agencies ask at the time of admission whether or not you have an advance directive. If you are unable to answer the question or if the advance directive is not available, it may not be included in your medical record. In that case, it may not be used to guide your care according to your wishes.

Advance directive forms are available at hospitals. But waiting to fill out an advance directive form until you are hospitalized is not a good idea because you may not be able to complete the form when you are admitted. Even if you are, these forms are very general in nature and may not cover all of your wishes.

There are some times that a health care provider may reject a medical decision made by you or your proxy based on your advance directive. This may happen in the following situations:

In such cases, the health care provider or facility must tell you right away. You may be transferred to another facility that will honor your decision.

Will my advance health care directive be used if I am taken to an emergency room?

Your advance directive is valid in an emergency room only if the health care providers there know about it. In serious emergency situations, it may not be possible for health care workers to know that you have an advance directive before emergency medical care is given. If a family member or friend calls Emergency Medical Services (911) at a time you cannot speak for yourself, your advance directive may not be honored. See the information about the non-hospital DNAR in the section "Types of advance health care directives." This is another reason that it is important for your family to know your wishes before such a situation happens.

It is estimated that about than one in 4 adults in the United States have advance directives. If you do not have an advance directive, you may get medical care that you do not want. If there is no advance directive, the doctor may ask your family about your treatment. Some state laws require that the spouse (unless legally separated) is asked first, followed by adult children, parents, and adult brothers and sisters. But some states do not have laws that require health care providers to check with family members. And it is not uncommon for family members (especially distant ones) to not know what you would want. Family members may also disagree on certain aspects of your care, which may cause delays or your not getting the care you want. It is unlikely that a close friend or same-sex partner will be consulted without an advance directive naming that person as your proxy. In some cases, a court may appoint a legal guardian to make health care decisions if you do not have an advance directive. This is why it is important to express your wishes in a written advance directive ahead of time and to discuss your wishes with your doctor, proxy, and those close to you.

Although a lawyer can be helpful, you do not need a lawyer to write your advance directive. Some states have required forms, and all states have certain requirements. Sample forms and directives that meet your state's requirements may be available. For more information on getting a state form for advanced directives, you can see the "Additional resources" section or visit www.caringinfo.org on the Internet.

Most states have their own rules about what is recognized as a valid advance health care directive. Some states recognize an out-of-state directive if it meets the legal requirements of the state in which you want to use it. If you want to use an advance directive in a state other than that in which you signed it, or if you want to have an advance directive in more than one state, it is a good idea to check with a lawyer in order to avoid potential problems.

No. No one, including health insurance companies, can require you to have or prevent you from having an advance directive. Having an advance directive will not affect any terms of your life insurance.

Having an advance directive does not mean you have given up your right to make any decisions about your care as long as you are able to do so. Having or not having an advance directive will not affect the quality of your care while you can make your own decisions. Treatment and comfort measures continue to be offered. The advance directive only takes effect when you cannot speak for yourself. At that point, certain cure measures may be withheld if that is what you requested. Any person who is mentally able can change or revoke his or her advance health care directive at any time.

Yes. You can have a living will and a durable power of attorney for health care at the same time. In most cases, you can provide extra instructions in your advance health care directive for situations not covered by the living will. It is important to be sure that these documents are consistent with each other so that there will be no confusion about your wishes if you become unable to make them known yourself. Some states also allow you to have a single, combined advance directive/living will document. But it is important to check your state's requirements to find out what is legally accepted in your state.

Yes. Once you make an advance directive, you may change or revoke it (take it back) at any time while you are competent to do so. If possible, changes should be signed, dated, and witnessed. You should tell your proxy or agent, loved ones, and doctor if you change or cancel your advance directive. You should also destroy all copies of the old advance directive so there is no confusion on the part of your proxy or your family. Some states require that you notify your doctor in writing when you make changes to your advance directive.

Someone who is dying but who is not a patient in a health care facility may face problems in having an advance directive honored in an emergency. Some states have addressed this issue by allowing 911 emergency medical service (EMS) providers to refrain from resuscitating terminally ill patients who are certified as having a "do not resuscitate" order written by a doctor. Some states require that home-bound patients who want their advance directives honored have a special orange DNAR form (see "Types of advance directives" section, above) or wear a special bracelet labeled "do not resuscitate." This is something that you should ask your local doctor and EMS about.

Do Not Resuscitate, or DNR, is an order written by a doctor telling the health care team taking care of you that CPR is not to be used if your heart or breathing stops. Advance directives often include instructions not to start CPR, but this may be difficult to honor in emergencies when no one is aware that you have an advance directive. Be sure that your doctor and nurses know if you do not want CPR each time you are admitted to a hospital or facility.

The in-hospital DNR orders do not help people once they go home. See the section, "Do Not Resuscitate orders" for more information.

End-of-life decisions are those decisions you can make about how you wish to be cared for and treated when you are dying. End-of-life decisions can include whether to accept or refuse treatments that prolong your life. An advance health care directive is one way to let others know about your decisions based on your values and priorities. Again, it is important that everyone close to you fully understands what you want at this time of your life so that it is as easy as possible for them to carry out your wishes.

The word euthanasia comes from a Greek phrase meaning "a gentle and easy death." Euthanasia is defined as any action or omission that causes death with the purpose of ending suffering due to illness. There are 2 major types of euthanasia: active and passive. Active euthanasia involves someone other than the patient taking active measures to end a patient's life, such as personally giving a deadly dose of a drug. Active euthanasia is illegal in the United States, even if the patient requests it. Passive euthanasia is defined as stopping life-sustaining treatment, such as breathing machines or feeding tubes. This allows a terminally ill patient to die naturally, without further prolonging death.

Assisted suicide is different from active or passive euthanasia. Assisted suicide is giving a patient the means to take his or her life, such as by writing a prescription for deadly dose of barbiturates that the patient may choose to take.

As of early 2009, only the states of Oregon and Washington allow doctors to write a prescription for a lethal dose of medicine for terminally ill patients who wish to end their lives. Those states' Death with Dignity Acts prohibit active euthanasia; that is to say, no one else can administer the lethal dose of medicine. The patient must do that for him or herself. The Act contains certain requirements; for example, the person must be a resident of the state, aged 18 or older, within 6 months of death, informed of possible alternatives, and must make several requests over time for help in hastening death. Despite efforts by the U.S. Attorney General to overturn Oregon's law, the Act was upheld by the U.S. Supreme Court in early 2006 and remains in effect. The state of Washington passed a law very much like Oregon's in 2008 that went into effect in March 2009. Not all doctors in those states will write such prescriptions even for people who meet all the requirements. Doctors can refuse to prescribe these drugs based on conscience.

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