Advance Directives for Health Care:
Planning Ahead for Important Health Care Decisions

• Preface
  • Commission on Legal and Ethical Problems in the Delivery of Health Care
  • Organizations and institutions that have endorsed this material
  • New Jersey Commission on Legal and Ethical Problems in the Delivery of Health Care
  • Task Force on Public and Professional Education
• Planning Ahead For Your Health Care: Making Your Wishes Known
  • Introduction: Why this booklet?
    • A Few Definitions
  • Questions and Answers
    • Why should I consider writing an advance directive?
    • When does my advance directive take effect?
    • What happens if I regain the ability to make my own decisions?
    • What is the advantage of having a health care representative, isn't it enough to have an instruction directive?
    • If I decide to appoint a health care representative, who should I trust with this task?
    • Should I discuss my wishes with my health care representative and others?
    • Does my health care representative have the authority to make all health care decisions for me?
    • Is my doctor obligated to talk to my health care representative?
    • Is my health care representative the only person who can speak for me, or can other friends or family members participate in making treatment decisions?
    • If I want to give specific instructions about my medical care, what should I say?
    • Are there particular treatments I should specifically mention in my directive?
    • Can I request all measures to be taken to sustain my life?
    • Does my doctor have to carry out my wishes as stated in my instruction directive?
    • Can I make changes in my directive?
    • Can I revoke my directive at any time?
    • Who should have copies of my advance directive?
    • Can I be required to sign an advance directive?
    • Can I be required to complete an advance directive as a condition of my insurance coverage?
    • Can I use my advance directive to make an organ donation upon my death?
    • Will another state honor my advance directive?
    • What if I already have a living will?
    • Do I need an attorney or a doctor to write one?
  • Terms You Should Understand
• Printable Forms
• Checklist: Questions to Ask Yourself

Advance Directives for Health: Planning Ahead for Important Health Care Decisions

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Task Force on Public and Professional Education

The materials and forms included here were written and prepared by Robert S. Olick, M.A, J.D., Executive Director, Michael Vollen, Associate Director (Project Director), and members of the Task Force. The following former staff members provided additional advice and support: Janice Chiantese, Director of Government Relations (co-Project Director). Adrienne Asch, Associate in Social Science and Policy, Anne Reichman, LL.B, LL.M. Associate in Law, Eve B. Sundelson, Esq., consultant, Ellen Friedland, Esq., consultant. The Commission wishes to express its gratitude to all these individuals for their contributions.

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Planning Ahead For Your Health Care:
Making Your Wishes Known

The purpose of this information is to help you prepare an advance directive, which reflects your wishes concerning medical care. While it contains sample forms and directions, advance directives are very personal documents and you should feel free to develop one which best suits your own needs. It consists of the following parts:

1. Introduction
2. Questions and Answers
3. Terms You Should Understand
4. Sample Forms
5. Checklist
   

1. Introduction: Why this booklet?

As Americans, we take it for granted that we are entitled to make decisions about our own health care. Most of the time we make these decisions after talking with our own physician about the advantages and disadvantages of various treatment options. The right of a competent individual to accept or refuse medical treatment is a fundamental right protected by law.

But what happens if serious illness, injury or permanent loss of mental capacity makes us incapable of talking to a doctor and deciding what medical treatments we do or do not want? These situations pose difficult questions to all of us as patients, family members, friends and health care professionals. Who makes these decisions if we can’t make them for ourselves? If we can’t make our preferences known how can we make sure that our wishes will be respected? If disagreements arise among those caring for us about different treatment alternatives how will they be resolved? Is there a way to alleviate the burdens shouldered by family members and loved ones when critical medical decisions must be made?

By using documents known as advance directives for health care, you can answer some of these questions and give yourself the security of knowing that you can continue to have a say in your own treatment. A properly prepared advance directive permits you to plan ahead so you can both make you wishes know, and select someone who will see to it that your wishes are followed.

After all, if you are seriously ill or injured and can’t make decisions for yourself someone will have to decide about your medical care. Doesn’t it make sense to:

• Have a person you trust make decisions for you, or
  
  
• Provide instructions about the treatment you do and do not want, or
  
  
• Both. Appoint a person to make decisions and provide them with instructions.

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A Few Definitions

Throughout this booklet we’re going to use four phrases. Each of these phrases has a special meaning when it comes to allowing you to make decisions about your future health care.

• Advance directive - If you want your wishes to guide those responsible for your care you have to plan for what you want in advance. Generally such planning is more likely to be effective if it’s done in writing. So, by an “advance directive” we mean any written directions you prepare in advance to say what kind of medical care you want in the event you become unable to make decisions for yourself.

There are three kinds of advance directives:

1. Proxy directives - One way to have a say in your future medical care is to designate a person (a proxy) you trust and give that person the legal authority to decide for you if you are unable to make decisions for yourself. Your chosen proxy (known as a health care representative) serves as your substitute, “standing in” for you in discussions with your physician and others responsible for your care. So, by a proxy directive we mean written directions that name a “proxy” to act for you. Another term some people use for a proxy directive is a “durable power of attorney for health care.”
   
   
2. Instruction directives - Another way to have a say in your future medical care is to provide those responsible for your care with a statement of your medical treatment preferences. By “instruction directive” we mean written directions that spell out in advance what medical treatments you wish to accept and refuse and the circumstances in which you want your wishes implemented. These instructions then serve as a guide to those responsible for your care. Another term some people use for an instruction directive is a “living will”.
   
   
3. Combined directives - A third way combines features of both the proxy and the instruction directive. You may prefer to give both written instructions, and to designate a health care representative or proxy to see that your instructions are carried out. So, by a “combined directive” we mean a single document in which you select a health care representative and provide him or her with a statement of your medial treatment preferences.

Whichever form you choose, it is important to remember to discuss your health care preferences with others. In order to help you choose the kind of directive which best suits your circumstances, the following pages answer some frequently asked questions about advance directives.

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2. Questions and Answers

Why should I consider writing an advance directive?
Serious injury, illness or mental incapacity may make it impossible for you to make health care decisions for yourself. In these situations, those responsible for your care will have to make decisions for you. Advance directives are legal documents, which provide information about your treatment preferences to those caring for you, helping to insure that your wishes are respected even when you can’t make decisions yourself. A clearly written directive helps prevent disagreements among those close to you and alleviates some of the burdens of decisionmaking which are often experienced by family members, friends and health care providers.

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When does my advance directive take effect?
Your directive takes effect when you no longer have the ability to make decisions about your health care. This judgment is normally made by your attending physician, and any additional physicians who may be required by law to examine you. If there is any doubt about your ability to make such decisions, your doctor will consult with another doctor with training and experience in this area. Together they will decide if you are unable to make your own health care decisions.

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What happens if I regain the ability to make my own decisions?
If you regain your ability to make decisions, then you resume making your own decisions directly. Your directive is in effect only as long as you are unable to make your own decisions.

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What is the advantage of having a health care representative, isn’t it enough to have an instruction directive?
Your doctor and other health care professionals are legally obligated to consider your expressed wishes as you stated in you instruction directive or “living will”. However, instances may occur in which medical circumstances arise or treatments are proposed that you may not have thought about when you wrote your directive. If this happens your health care representative has the authority to participate in discussions with your health care providers and to make treatment decisions for you in accordance with what he or she knows of your wishes. Your health care representative will also be able to make decisions as your medical condition changes, in accordance with your wishes and best interests.

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If I decide to appoint a health care representative, whom should I trust with this task?
The person you choose to be your health care representative has the legal right to accept or refuse medical treatment (including life-sustaining measures) on your behalf and to assure that your wishes concerning your medical treatment are carried out. You should choose a person who knows you well, and who is familiar with your feelings about different types of medical treatment and the conditions under which you would choose to accept or refuse a specific treatment or all treatment.

A health care representative must understand that his or her responsibility is to implement your wishes even if your representative or others might disagree with them. So it is important to select someone in whose judgment you have confidence. People that you might consider asking to be your health care representative include:

• a member of your family or a very close friend, your priest, rabbi or minister, or
  
  
• a trusted health care provider, but your attending physician cannot serve as both your physician and your health care representative.

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Should I discuss my wishes with my health care representative and others?
Absolutely! Your health care representative is the person who speaks for you when you can’t speak for yourself. It is very important that he or she has a clear sense of your feelings, attitudes and health care preferences. You should also discuss your wishes with your physician, family members and others who will be involved in caring for you.

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Does my health care representative have the authority to make all health care decisions for me?
It is up to you to say what your health care representative can and cannot decide. You may wish to give him or her broad authority to make all treatment decisions including decisions to forego life-sustaining measures. On the other hand, you may wish to restrict the authority to specific treatments or circumstances. Your representative has to respect these limitations.

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Is my doctor obligated to talk to my health care representative?
Yes. Your health care representative has the legal authority to make medical decisions on your behalf, in consultation with your doctor. Your doctor is legally obligated to consult with your chosen representative and to respect his or her decision as if it were your decision.

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Is my health care representative the only person who can speak for me, or can other friends or family members participate in making treatment decisions?
It is generally a good idea for your health care representative to consult with family members or others in making decisions, and if you wish you can direct that he or she do so. It should be understood by everyone, however, that your health care representative is the only person with the legal authority to make decisions about your health care even if others disagree.

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If I want to give specific instructions about my medical care, what should I say?
If you have any special concerns about particular treatments you should clearly express them in your directive. If you feel there are medical conditions, which would lead you to decide to forego all medical treatment, including life-sustaining measures, and accept an earlier death, this should be clearly indicated in your directive.

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Are there particular treatments I should specifically mention in my directive?
It is a good idea to indicate your specific preferences concerning two specific kinds of life-sustaining measures: artificially provided fluids and nutrition and cardiopulmonary resuscitation. Stating your preferences clearly concerning these two treatments will be of considerable help in avoiding uncertainty, disagreements or confusion about your wishes. The enclosed forms provide a space for you to state specific directions concerning your wishes with respect to these two forms of treatment.

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Can I request all measures to be taken to sustain my life?
Yes. You should make this choice clear in your advance directive. Remember, a directive can be used to request medical treatments as well as to refuse unwanted ones.

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Does my doctor have to carry out my wishes as stated in my instruction directive?
If you treatment preferences are clear your doctor is legally obligated to implement your wishes, unless doing this would violate his or her conscience or accepted medical practice. If your doctor is unwilling to honor your wishes he or she must assist in transferring you to the care of another doctor.

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Can I make changes in my directive?
Yes. An advance directive can be updated or modified, in whole or part, at any time, by a legally competent individual. You should update your directive whenever you feel it no longer accurately reflects your wishes. It is a good idea to review your directive on a regular basis, perhaps every 5 years. Each time you review the directive, indicate the date on the form itself and have someone witness the changes you make. If you make a lot of changes, you may want to write a new directive. Remember to notify all those important to you of any changes you make.

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Can I revoke my directive at any time?
Yes. You can revoke your directive at any time, regardless of your physical or mental condition. This can be done in writing, orally, or by any action, which indicates that you no longer want the directive to be in effect.

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Who should have copies of my advance directive?
A copy should be given to the person that you have named as your health care representative, as well as to your family, your doctor, and others who are important to you. If you enter a hospital, nursing home, or hospice, a copy of your advance directive should be provided so that it can be made part of your medical records. Complete the wallet size card (under "Printable Forms" below) and carry with you to tell others that you have an advance directive.

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Can I be required to sign an advance directive?
No. An advance directive is not required for admission to a hospital, nursing home, or other health care facility. You cannot be refused admission to a hospital, nursing home, or other health care facility because you do not have an advance directive.

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Can I be required to complete an advance directive as a condition of my insurance coverage?
No. You cannot be required to complete an advance directive as a condition for obtaining a life or health insurance policy. Also, having or not having an advance directive has no effect on your current health or life insurance coverage, or health benefits.

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Can I use my advance directives to make an organ donation upon my death?
Yes. The sample combined directive and instruction directive provide a place for you to state your wishes regarding organ donation. Also, there is a wallet size organ donor card. If you decide to make a gift of your organs upon your death please complete the card and carry it with you at all times. (These forms are available at the bottom of this page.) For further information regarding organ donation, you should contact either an organ procurement agency or your local hospital.

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Will another state honor my advance directive?
It is likely that your advance directive will be honored in another state, but this is not guaranteed.

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What if I already have a living will?
While you may want to review your existing living will or advance directive and make sure it reflects your wishes, there is no legal requirement that you do so.

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Do I need an attorney or a doctor to write one?
You should consult with anyone you think can be helpful, but it is not necessary. Information contained here and the forms are designed to enable you to complete your advance directive without the need for legal or medical advice. If the medical terminology is unclear to you, most health care professionals will be able to help you understand it.

3. Terms You Should Understand

1. Artificially provided fluids and nutrition: The provision of food and water to seriously ill patients who are unable or unwilling to eat. Depending on the method used, such as insertion of a feeding tube or an intravenous line, the condition of the patient, techniques may involve minor surgery, continuous supervision by medical (and sometimes surgical) personnel, risk of injury or infection, and side effects.
   
   
2. Cardiopulmonary Resuscitation (CPR): A treatment administered by health care professionals when a person’s heartbeat and breathing stops. CPR may restore functioning if administered properly and in a timely fashion and may include the use of mechanical devices and/or drugs.
   
   
3. Life-sustaining measures: Any medical procedure, device, artificially provided fluids and nutrition, drugs, surgery, or therapy that uses mechanical or other artificial means to sustain, restore or supplant a vital bodily function, thereby prolonging the life of a patient.
   
   
4. Decisionmaking capacity: A patient’s ability to understand benefits and risks of a proposed medical treatment and its alternatives and to reach an informed decision.
   
   
5. Health care representative or health care proxy: In the event an individual loses decisionmaking capacity, a health care representative or proxy is a person who has been legally designated to make decisions on his or her behalf. A health care representative is appointed through the execution of a proxy directive (a durable power of attorney for health care).
   
   
6. Terminal condition: The terminal stage of irreversibly fatal illness, disease, or condition. While determination of a specific “life expectancy” is not required for a diagnosis of a “terminal condition”, a prognosis of a life expectancy of one year or less with or without the provision of life-sustaining treatment, is generally considered terminal.
   
   
7. Permanent unconsciousness: A medical condition defined as total and irreversible loss of consciousness. The term “permanently unconscious” includes the conditions persistent vegetative state and irreversible coma. Patients in this condition cannot interact with their surroundings or others in any way and do not experience pleasure or pain.
   
   
8. Persistent vegetative state: A condition of permanent unconsciousness in which the patient loses all capacity for interaction with their environment or other people. It is usually caused by an injury to the brain. It is normally not regarded as a terminal condition and with the aid of medical care and artificial fluids and nutrition patients can survive for many years.
   
   
9. Incurable and irreversible chronic diseases: Disabling diseases such as Alzheimer's disease, organic brain syndrome or other diseases, which get progressively worse over time, eventually resulting in death. Depending on the disease, the patient may also experience partial or complete loss of physical and mental abilities. Because the rate at which these diseases advance may be slow, such diseases are not considered terminal in their early stages.
   
   
10. Whole brain death: Death due to total and irreversible loss of all functions of the entire brain, including the brain stem. The criteria of whole brain death must be used to accurately determine death in individuals who have suffered massive or total brain damage but whose heart and lungs are kept functioning by machines. Brain dead individuals are not vegetative or in a coma, but are, in fact, dead.
    
    
11. Attending physician: The doctor directly responsible for your medical treatment. He or she may or may not be your regular family physician. Depending on your health care needs, the attending physician may consult with others in order to diagnose and treat your medical condition, but he or she remains directly responsible for your care.

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1. Thinking about your Health Care Wishes
   
   1. Why am I writing an advance directive?
   2. What are my treatment wishes?
      1. in situations near the end of life?
      2. in situations of serious injury or illness?
      
      
2. Talking with Others
   
   1. Physicians and other health care professionals
      1. do I understand the medical terminology?
      2. do they understand my wishes?
   2. My friends, family and others
      1. have I directly and thoroughly discussed my wishes with them?
      2. do they understand my wishes?
         
         
3. Selecting a Health Care Representative
   
   1. Am I confident that my designated representative understands my personal values and health care wishes?
   2. Does my health care representative understand his or her responsibilities?
   3. Has he or she clearly agreed to serve as my representative and to communicate my wishes to my doctor and others concerned with my care?
   4. Have I selected an alternative health-care representative?
      
      
4. My instructions. Have I clearly stated my instructions and included other relevant information about my treatment wishes regarding:
   
   1. the provision, withholding or withdrawal of specific treatments?
   2. artificially provided fluids and nutrition?
   3. the medical conditions in which I want my wishes implemented?
   4. special considerations I may have concerning my care and treatment?
      
      
5. Witnesses. Have I had my directive properly witnessed?
   
   
6. Distribution of my Advance Directive. Have I given a copy of my directive to those who should have one, such as:
   
   1. my health care representative?
   2. my physician or other health care provider?
   3. the hospital or nursing home which I am about to enter?
   4. family members, friends, alternate representatives and my religious advisor?
      
      
7. Periodic Review. Have I made a note to review my directive on a regular basis in the future?
   
   
8. Wallet Card. Have I completed the wallet size card below which tells others I have an advance directive and who to contact for further information?

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Printable Forms (PDF Format)

• Proxy Directive
  

• Combined Advance Directive for Health Care
  

• Instruction Directive
  

• Wallet Card