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 decision making which are often experienced by family members, friends and health care providers.
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.
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.
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 stated in your 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.
If I decide to appoint a health care representative, who 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 either 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:
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.
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.
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.
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.
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.
Are there particular treatments I should specifically mention in my directive?
It is a good idea to indicate your specific preferences concerning specific kinds of life sustaining measures like artificially provided fluids and nutrition and cardiopulmonary resuscitation. Recognizing that respiratory failure is frequently the cause of death in ALS, one should consider carefully and state in advance one's preference regarding invasive mechanical ventilation requiring endotracheal intubation. 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.
Can I request all measures 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.
Can I make changes in my directive?
Yes. An advance directive can be updated or modified, in whole or in 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.
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.
Who should have copies of my advance directive?
A copy should be given to the person that you 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. A wallet size card you can complete and carry with you to tell others that you have an advance directive can be downloaded here.
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.
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. This website and the downloadable 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.
The information on Advanced Directives comes from a brochure titled “Advance Directives for Health Care - Planning Ahead for Important Health Care Decisions”, a publication of the State of New Jersey Commission of Legal and Ethical Problems in the Delivery of Health Care (The New Jersey Bioethics Commission). To download a PDF of the complete brochure please click here.