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C. Living Wills and AMDs

C. Living Wills and Other Advance Medical Directives (AMDs).

These are documents that address a variety of complicated medical, legal and ethical situations that may confront each of us near the very end of life. Although there is considerable variation among them, every state recognizes the patient’s right to make fundamental choices as to the care and treatment he/she will or will not receive at that time.

In all cases – whether you have signed an AMD or not – as long as you retain the capacity to make and express decisions for yourself, your consent must be obtained for your medical treatment. You remain solely and totally in control. If you have an AMD, it can be revoked or modified at any time, if you are still capable of doing so.

Although many people have heard of the Living Will, few realize that this is often a very narrow form of AMD, in terms of the situations it addresses. For example, the Living Will might only speak about “heroic” life prolonging measures, and might only apply when death is otherwise imminent. Such a directive would be of no use to the patient who is stable, but in a coma with no chance of recovery. Most of us planning along these lines hope to “cover all the bases.” There are two means to do this: Preparing a comprehensive medical directive of your wishes in advance of the need, and appointing someone to speak for you on these matters when you cannot.

In most states, a health care “agent,” “surrogate” or “proxy” can be selected by the patient. The proxy can be authorized to make any health care decision the patient could have made if he/she had decision-making capacity, as long as it conforms with accepted medical practice.

Sometimes this document is called a Health Care Power of Attorney. Note that the proxy need not be chosen only in anticipation of death. He/she can be empowered to deal with temporary incapacity, too. Of course, you do not have to already be a “patient” before preparing one of these documents.

No specific format is required of an AMD in most places, but most states have laws that include a sample form for appointing a health care proxy, and/or for creating a comprehensive advance directive. In many states, the use of these forms is optional, or they need only be “substantially” followed. Because of the simplicity of the document, it should not cost much to have a lawyer draft one for you, especially if it is done at the same time as your Will or Trust.

The AMD can be prepared without an attorney, but you should not just copy an “official” form and sign it unchanged, unless it reflects what you really want. If available, an official form from the statute books of your state is the best place to start. State-specific guides with sample forms are also available to members of the American Association of Retired Persons (AARP), through its office of Legal Counsel for the Elderly. If you are in a nursing home or other institution, there is generally a patient advocate to consult about making an AMD.

Even if you use the form as a reference, reflect upon your own wishes as to the various contingencies it addresses. Then, the form can and should be personalized to reflect your particular values and instructions. If changing the official form creates any doubt about its validity, talk to a lawyer.

Executing the document. Required procedures for signing and witnessing an AMD vary widely. The notarized signatures of you and two witnesses is advisable. This might well be more than necessary in your state, but it is intended to help ensure that your AMD is recognized in other states, too. There should be a clause in which the witnesses recite that they know you personally and declare that you appear to be of sound mind and under no duress or undue influence. Further, you and the witnesses should acknowledge that the document being signed is, in fact, your advance medical directive.

BEWARE ! Perhaps most importantly, keep in mind that under the law of some states, the following people, who might be at your side during a grave illness, might not be valid witnesses: Your treating physician, health care provider, or health facility operator, or even an employee of any of these; Anyone related to you by blood or adoption; Anyone entitled to any part of your estate under an existing Will or by operation of law (this would rule out one’s spouse).

Following exactly (or exceeding) the signing and witnessing requirements imposed on AMDs by the law of your state might be more important than the precise words used to express yourself. “Close” may not be good enough. If the execution of the document is not perfect, it might be invalid, and medical personnel might fear a lawsuit if they relied upon it.

Your agent’s authority. The scope of your agent’s power usually is intended to be broadly worded, giving him/her authority to make any decision you personally could make to obtain or terminate any type of health care. (Remember that, even with this authority, your agent and doctor still must follow your directions, if you are capable of communicating them in any manner, now or later.)

Most AMDs are worded to become effective upon your incapacity to make health care decisions. That point is determined by your agent and/or your doctor. You may specify other effective dates or other criteria for incapacity, such as requiring the judgment of two physicians. But do not make it too complicated, or your agent might have trouble establishing his/her authority with your health care providers. You can also direct that the power will end at a later date, or upon a particular event, such as release from the hospital after surgery.

Remember that the role of health care agent or proxy is not easy, so give yours some guidance in making what might be extraordinarily difficult and painful decisions. Indicate to your agent any religious or ethical limitations to be placed on your treatment, such as the refusal of blood transfusions, psychosurgery, amputation or abortion.

The document should instruct the proxy that in making any decision, he/she is to first try to communicate the proposed decision to you, to ascertain your desires, if possible. If this is not possible, your agent should be instructed to make a choice for you based upon what he/she believes to be in your best interests.

Under state law, it probably is not possible to compel a health care provider to follow the directions of your agent, especially if doing so would violate his/her own conscientious principles. (In some states, that provider would then be required to transfer you to another who is willing to comply.) To ease their concerns about complying with your wishes, medical personnel and others who rely on your agent should be absolved of legal liability for the consequences of following duly authorized instructions. There could otherwise be situations in which a provider would be reluctant to withdraw treatment, fearing a lawsuit by the family, months later.

Powers to be included in the AMD. The following would seem to be basic powers that must be given to your agent if he/she is to have any meaningful health care decision making authority:

– To consent, refuse, or withdraw consent to any and all types of medical care, treatment, surgical and/or diagnostic procedures, medication, and the use of mechanical or other means to affect any bodily function, including (but not limited to) artificial respiration and cardiopulmonary resuscitation, and

– To authorize your admission to or discharge from any hospital, nursing home or other facility, even against medical advice, and

– To authorize any medication or procedure intended to relieve pain, even though such treatment might lead to bodily damage, drug addiction, or hasten the moment of (but not intentionally cause) your death;

Life sustaining treatment. Perhaps the most critical provision in an AMD is the expression of the patient’s wishes as to “life-sustaining treatment.” If it is your desire that your doctors do employ maximum life-sustaining or prolonging efforts, an AMD should certainly be used to alert everyone. If that is not what you want, let your agent base this most difficult judgment on an expression such as: “I do not want my life to be prolonged, and I do not want life-sustaining treatment to be provided or continued if my Agent believes the burdens of the treatment outweigh the expected benefits. In making this determination, my Agent is to consider the relief of my suffering, the expense involved and the quality of my continued existence, as well as the length of time by which the proposed treatment is likely to extend my life.”

People differ widely on whether “nutrition and hydration” is to be considered “treatment,” subject to being terminated. It is, therefore, very important to make your wishes known. This is especially true if you live in a state where, by law, the withholding or withdrawal of food and water is not permitted unless the patient has given specific written authorization.

“Nutrition and hydration” refers to the introduction of food and fluids into the body through a nasogastric feeding tube and/or intravenous fluid lines. Under all circumstances, appropriate non-invasive care, such as spoon feeding or moistening the mouth should be expected to continue.

There are several other easily overlooked matters of practical importance to be considered. Your agent should be authorized:

– To make contracts on your behalf for any health care related service or facility, and to hire and fire medical or other support personnel for your care, without the agent incurring personal financial liability for such arrangements;

– To have the same access to medical records and information that you are entitled to;

– To make anatomical gifts of your organs, if that is important to you. Without specific written authority, your agent will probably be unable to do so.

Problems to anticipate. If you have made the decision to refuse treatment, medical providers must, by law, honor it. Before imposing this duty, however, the law requires that they know of your instructions. That is where the problem can lie. As a practical matter, it is up to you to ensure that everyone expected to follow your instructions has been given a copy of your AMD. True, under federal law, hospitals and nursing homes are required to ask about your AMD, but there is no guarantee the actual document will find its way into the right hands when needed. So without some extra effort on your behalf, the doctor or hospital might, in fact, not know about the AMD. Have several original documents prepared for signing initially, so they can be taken along on trips, and freely distributed in advance by you or your agent.

People living in the community face practical problems in the event of a medical crisis at home, to which emergency personnel respond. First, of course, the AMD must be handy, to be of any use. The ambulance people are not going to wait to do CPR, for example, while the family rummages through desk drawers.

Secondly, these personnel may be required by law or their own policy to administer life support and stabilize patients for safe transport to a hospital. If this is so, there is little one can do until the patient is at the hospital. Some states are developing procedures that allow emergency medical personnel to refrain from life support efforts under some circumstances.

Finally, for those who have no AMD, some states have laws that authorize family members, in a specific order of kinship, to make some or all health care decisions. Even without such statutes, doctors and hospitals routinely rely on family to make decisions, IF there are close family members around and IF they are in agreement. Problems are likely to arise, however, when the family does not know or cannot agree on what the patient would want in a given situation. This uncertainty can lead to family disharmony and extra unpleasantness at an already stressful time.

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