Frequently asked questions
What is a terminal condition?
A terminal condition or terminal illness 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. Examples of terminal conditions include advanced cancers, multiple organ failures, or massive heart attacks and strokes. But in many states, a terminal illness is defined as one in which the patient will die “shortly” whether or not medical treatment is given. These definitions can complicate or delay the use of a living will.
What is life-sustaining medical treatment?
In most cases life-sustaining medical treatment is anything mechanical or artificial that sustains, restores, or substitutes for a vital body function and would prolong the dying process for a terminally ill patient. States have different definitions, so be sure you know what your state says. Life-sustaining medical treatment may include:
- Cardiopulmonary resuscitation (CPR)
- Artificial respiration (includes mouth-to-mouth breathing, manual ventilation, or a ventilator or respirator – a “breathing machine” that pushes air into the lungs)
- Medicines to help with blood pressure and heart function
- Artificial nutrition or hydration (liquid food or fluids given through a tube to the stomach or into a vein)+
- Dialysis (a process that does the job the kidneys normally do)
- Certain surgical procedures (such as amputation, feeding tube placement, tumor removal, or organ transplant)
When should I make an advance directive?
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 decisions about what medical care you want to get 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’s very important that your loved ones know that you have written an advance directive and what medical care you want in certain situations. It’s not possible to plan for every medical event that could happen in your life. That’s why some people write 2 advance directives – a medical power of attorney along with a living will or 5 Wishes form (see “Can I have both a living will and a power of attorney for health care?”). But you can use any kind of advance directive as a starting point to discuss difficult subjects like illness and dying.
Through open talks with your loved ones, you can explain what’s important to you and what kind of treatments you do and do not want. 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 know and understand what you want.
What happens when I have an advance directive?
If you have an advance directive and cannot make your own medical decisions, these decisions will be made for you. They will be based on the types of medical care you have outlined in your advance directive and/or made by the person you chose as your agent or proxy (substitute decision-maker). It’s 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’s in it. They also need to have a copy of your current directive so that it can be used in your medical treatment.
Talk to all of your family about your advance directive. If you have a health care power of attorney, be sure they know who you have named as proxy and back-up proxy, and what you have told them about your wishes. There may be problems if everyone in your family does not know about or does not support the choices you’ve outlined 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 be what you would want.
How will my doctor know that I have an advance directive?
If you have any type of advance directive, tell people close to you that you have it and where it’s 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. Talk it over with your doctor, but keep in mind that your doctor’s office records are not likely to be available to any hospital or facility where you might be admitted.
Don’t keep your advance directive locked up where no one can find it or get to it. It’s up to you, your proxy, or a family member to give a copy of your advance directive to your doctor and hospital when it’s 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 your advance directive isn’t available, it might not be included in your medical record. If this happens, your advance directive might not be used to guide your care.
Does the doctor have to follow my advance directive?
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. For instance:
- When the decision goes against the individual health care provider’s conscience
- When the decision is against the health care institution’s policy
- If the decision violates accepted health care standards
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 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 directives,” above. This is another reason why your family needs to know your wishes before such a situation happens.
What happens if I do not have an advance directive?
It’s estimated that about than 1 in 4 adults in the United States have advance directives. If you don’t have an advance directive, you could be given medical care that you do not want. If there’s 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’s common for family members (especially those who aren’t close to you) to not know what you would want. Family members might also disagree on certain aspects of your care, which may cause delays or lead to you not getting the care you want. For example, it’s unlikely that a close friend or unmarried 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’s important to express your wishes in a written advance directive ahead of time and discuss your wishes with your doctor, proxy or agent, and those close to you.
Do I need a lawyer to write my advance directive?
A lawyer can be helpful, but most people don’t need one to write your advance directive. Some states have forms you must use, 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, see the “To learn more” section or visit www.caringinfo.org.
Can I have an advance directive in more than one state?
Most states have their own rules about what’s recognized as a valid advance 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’s a good idea to check with a lawyer in order to avoid potential problems.
Does having an advance directive affect my life insurance?
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.
Does having an advance directive affect my health care?
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 will continue to be offered.
The advance directive is only used when you cannot speak for yourself. At that point, certain cure measures may be withheld if that’s what you requested. Any person who is mentally able can change or revoke (take back) his or her advance directive at any time.
Can I have both a living will and a power of attorney for health care?
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 also provide extra instructions in another type of advance directive for situations not covered by the living will.
If you have more than one kind of advance directive, be sure that the person you name as your proxy in the power of attorney for health care has copies of your living will and any other advance directive. Your proxy must clearly understand what you want. It’s also very important to be sure that these documents don’t conflict with each other, so that there will be no confusion about your wishes if you can’t speak for yourself.
Some states allow you to have a single, combined advance directive/living will document. But it’s important to check your state’s requirements to find out what’s legally accepted in your state.
Can I change my mind about what’s written in my advance directive?
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. It’s recommended that you review your advance directive:
- At every new decade of your life – every 10 years
- You are diagnosed with a serious illness or have a major health change
- You have a decline in an existing health condition, especially if it makes it harder for you to live on your own
- You go through a divorce or other major family change
- You experience the death of a loved one
You should tell your proxy or agent, family, loved ones, and doctor if you change or cancel your advance directive. Be sure they all have the new advance directive. You and your loved ones should destroy all copies of the old advance directive so there’s 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.
Is my advance directive valid if I’m at home?
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 the “Types of advance health care directives” section) or wear a special bracelet labeled “do not resuscitate.” This is something that you can ask your local doctor and EMS about.
What is a “do not resuscitate” order?
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 if no one knows 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 “‘Do Not Resuscitate’ orders” in the “Types of advance directives” section for more on this.
What are “end-of-life decisions?”
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 might prolong your life. An advance directive is one way to let others know about your decisions based on your values and priorities. Again, it’s important that everyone close to you fully understands what you want at this time of your life. Make it as easy as possible for them to carry out your wishes.
What is “euthanasia?”
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 the patient a deadly dose of a drug. Active euthanasia is illegal everywhere 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.
What is assisted suicide?
Assisted suicide is different from active or passive euthanasia. Assisted suicide is giving a patient the means to end his or her life, such as by writing a prescription for deadly dose of drugs that the patient may choose to take.
Several states now have laws allowing doctors to write prescriptions for lethal doses of medicine for terminally ill patients who wish to end their lives. Patients in these states must meet many requirements before they can qualify to hasten their deaths. Even then, not all doctors in these states will write such prescriptions even for people who meet all the requirements. Doctors can refuse to prescribe these drugs based on conscience.
All of these states prohibit active euthanasia, which means no one else can administer the lethal dose of medicine. The patient must do that for him or herself.