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Making an Advance Directive

What happens if people become too sick to make their own medical decisions? Someone must decide when to start treatment, when not to start it, or when to stop it. Family members and doctors usually make decisions when the patient can’t. Sometimes they are not sure what is best. Sometimes they disagree.

That’s when it would be good to know what the patient would have wanted and who the patient would have wanted to make these decisions. That’s why it will help your family, close friends, and physicians, if you have filled out an advance directive. And having one empowers you – if you’ve made your wishes clear, they’re more likely to be followed.

Q - What’s an Advance Directive?

An advance directive is a legal document completed by you. You write in advance what you want done in case you have a serious injury or illness and aren’t able to speak for yourself. You can use an advance directive in two ways.

First, do you have someone you want to name as your “agent”? You can name a relative or friend you trust as your “agent” to make medical decisions for you if you can’t make them yourself. In California, this type of directive is called an Advance Health Care Directive.

Second, you can write down when you would or wouldn’t want to be treated if you became very sick. And you can describe what kinds of treatment you would or would not want. The Advance Health Care Directive covers all medical decisions someone else might make for you, not just decisions about life-sustaining treatment. It gives everyone the best legal protection. Your physicians are also required to follow you or your agent’s instructions or to transfer your care to another physician who will.

Q - Do I need a special form for this Advance Health Care Directive?

Yes. You can ask your physician, nurse, or social worker about the form. The California Medical Association has printed forms that meet legal requirements. You can get one from them at P.O. Box 7690, San Francisco, CA 94120-7690, or by calling 1-800-882-1262. There is a small charge for this form. Write or call first to find out the cost. Many stationery stores also carry forms. Be sure to get an Advance Health Care Directive form.

Q - Is the form hard to fill out? Do I need a lawyer to help?

The form is usually about four pages. Some versions are longer or shorter.

All the forms tell you how to fill them out. You can talk with a lawyer if you think that will be helpful, but you don’t have to. If you use a lawyer to make out your will, he or she may be able to help you with this form as well. If you want to talk to a lawyer but can’t afford one, or are over 60, call the legal services agency in your area or your County Bar Association for information about how to get help at no cost.

You will have to think about some things before you can complete the form. First you need to think about when you would or would not want medical treatment. Next, you need to talk to your family and your doctor. Then you need to decide who will make health care decisions on your behalf.

Q - Can I name anybody to be my agent?

You can name anyone over the age of 18 with some exceptions. You cannot name your doctor, nurse or any other professional who is providing health care for you. You cannot name an employee of any person who is providing your health care or of any place where you are receiving care. If an employee of your health care provider or of your health care institution is a relative, however, then that person may be your agent.

You should think very carefully about who you want to be your agent. It should be someone you feel comfortable talking to. Someone who knows your values and the things you care about. Someone who is likely to know when you are sick and make decisions for you. Someone who can be there if you become seriously ill. Someone you feel you can trust to do what you want. And someone who can stand up for what you want.

These decisions can be emotionally hard and you will want to choose someone who can help you. You should also name a second choice to be your agent in case the person you name as first choice cannot do it for some reason.

Q - Can my agent make any health care decisions that I would make if I were able?

Yes, with a few limitations. First, the law doesn’t permit your agent to consent to certain types of treatment: abortion, sterilization, psychosurgery or involuntary mental health treatment. Second, your agent has to follow any specific instructions you have given and he or she cannot make any decision that you have said you don’t want made. Other than these limitations, your agent has the same authority to make medical decisions on your behalf that you would have. Your agent acts for you and makes decisions as you would.

Q - What do I do after I’ve decided on an agent?

First, you should talk with the person you plan to name as your agent to make sure that he or she understands what this would mean and agrees to accept this responsibility. Next, you have to decide whether you want to write down any specific instructions about your treatment. You can just name someone to be your agent and let that person make any decisions that need to be made when you aren’t able to make them. If you do not write specific instructions, your agent will make decisions based upon his or her understanding of your wishes and what would be best for you under the circumstances.

Or you can write down when you do or do not want treatment if you have strong feelings about that. Some of the printed Advance Health Care Directive forms have boxes you can check. You can check a box that matches your wishes or you can write your treatment wishes in the blank spaces on the form. You do not have to check any of the boxes or write anything in the blank spaces.

Either way – whether or not you write specific instructions – it’s a good idea to talk with your agent and with your family and doctor concerning how you feel about treatment decisions.

Q - If I want to write my instructions, what kinds of things should I think about?

Some people write about what treatments they want. Would they want CPR, a breathing machine (ventilator) or blood transfusions? That may not always be helpful because you might want blood transfusions, for example, in some situations but not in others. How much treatment would you want:

– If lengthy treatment would provide a small chance of full recovery?

– If you probably wouldn’t ever leave the hospital?

– If you were going to be permanently unconscious?

– If you would recover your mental capacity but would be paralyzed?

– If living longer meant being in pain?

– If treatment might give you longer life but was very expensive?

– If you needed to be fed through tubes in order to prolong your life?

– If treatment seemed like it was just stretching out your death?

It will probably help your agent, family and doctors most to know what kinds of things you value in life related to medical care. For example, how important is independence and self-sufficiency to you? What role do religious beliefs play in your life? What is the significance of illness, disability and death to you? What do you cherish or fear most? These are hard things to think about. So give yourself some time. It helps to talk to your family or friends and perhaps to a minister, priest, or rabbi about this before you make any decisions.

Q - Do I have to talk to everybody? Can’t I just fill out the form and give it to my doctor?

Talking to your agent, your second-choice agent, your family and your doctor helps them to understand what you want and especially why you feel that way. Your wishes will be clearer to them if they have a chance to ask you questions. You want to be sure that everyone understands

(1) who you want to make decisions for you and
(2) what decisions you want made.

Q - What else is my agent permitted to decide?

You can also use the form to express your wishes about the following:

– If you want to be an organ donor after your death.

– If you want an autopsy done after your death.

– What kind of funeral arrangements you want.

If you only name someone to be your agent, that person can make all these decisions for you. That’s why it is important to think carefully about who will be your agent. That person will have important decisions to make.

Q - What do I do with the form once I’ve filled it out?

First, you need to sign and date it and have your signature witnessed or notarized. You do not need both witnesses and a notary.

If you have the form witnessed, you will need two witnesses. One of them has to be someone who is not related to you and who is not named in your will or entitled to inherit anything from you. The person you name as your agent also cannot be a witness. Neither can doctors, nurses, employees of the hospital or any other health care providers, even if they are not providing care for you. Your friends or neighbors can be witnesses. If you are in a nursing home, one of the witnesses must be a patient advocate or ombudsman.

Second, you need to make copies.

Your form should say that you authorize the use of copies as though they were originals. If this is not included in the form you should write it in. You should give one copy to your agent, one to your second-choice agent, one to your physician and one to each family member who would know if you were hospitalized. You need to keep the original yourself and put it in a safe place where you can get at it easily – not in a safe deposit box! You may want to give a copy to your lawyer if you have one. But remember that your lawyer is not likely to be called if you are in the hospital and can’t make your own decisions. Be sure to take a copy with you when you go to a hospital or nursing home so it can be put in your medical record.

Q - What if I change my mind or I want to add something? Can I just fill out a new form?

If you change your mind, you can revoke the form just by telling your agent, your family or your physician that you have changed your mind. It is best to tell everyone if you can so there will not be a mix up. It is also a good idea to tear up all the copies of the form if you can.

If you fill out a new form, it overrules all the earlier forms. If you want to change something or add something, you should start over with a new form. Give copies of the new form to all the people who have copies of your original Advance Health Care Directive so they will know about your changes. You – and they – should destroy all the old forms when you make a new one.

Q - Is this form good forever as long as I don’t change my mind about anything?

Unless you specify a shorter time period when you prepare your Advance Directive form, it is good until you revoke it or write a new one.

If you name your spouse as your “agent” and then you get a divorce, your former spouse stops being your agent. If you have written your wishes about treatment in the form, your doctors could still use them to help make treatment decisions for you, however. 

Q - What if I don’t have anybody I want to name as an agent? Then what can I do?

You can still sign an Advance Health Care Directive and just write what you want or do not want for medical treatment. When you sign the advance directive, you may tell your doctors that you do not want any treatment that would only prolong your dying. All life-sustaining treatment would be stopped. You would still receive treatment to keep you comfortable, however.

The doctors must follow your wishes about limiting treatment or turn your care over to another doctor who will. Your doctors are legally protected when they follow your wishes.

Q - What if I don’t like the Advance Health Care Directive but I still want to write my wishes about treatment down?

You can just write what you want and don’t want on a plain piece of paper. Writing down your wishes can help your family and doctors decide about treatment for you. If a disagreement over what to do ever went to court, the judge would probably see that your wishes were followed. California courts have said it is legal for doctors and families to do what patients said they wanted, including terminating life-sustaining treatment.

Q - Why should I bother with an Advance Directive?

When you are not able to participate with the doctors in making decisions about your treatment, someone will have to make the decisions. Thinking now about what you would want and making clear plans is the best way to make sure that the choices you want get made by the people you would want to make them.

And it can help your family, friends, and physicians know they are doing the right thing for you as you would want. If you have further questions about advance directives, please ask your doctor, nurse or social worker for help.

This document was developed by the California Consortium on Patient Self-Determination, a working coalition of health care provider organizations and professionals, consumers, bioethics centers, and the State.

©2000 California Consortium on Patient Self-Determination

Pacific Center for Health Policy and Ethics
University of Southern California Law Center
Los Angeles, CA 90089-0071
213-740-2541