Mrs. B is a 79-year-old retired schoolteacher who was in excellent health
prior to suffering a stroke three days
previously. Her physician has on file in her medical record a living will, which she wrote out some ten years
before. At that time she had indicated that, should she ever suffer a stroke of any sort, she would not want to be
saved. She had watched her mother live as an invalid for about four years in a nursing home after sustaining a
stroke. Mrs. B wanted to be sure she would never be exposed to such an indignity nor constitute such a burden
on others. The physician is not sure whether this continued to be the view of Mrs. B. Since signing the
instrument, Mrs. B never discussed the matter again. Mrs. B's home state does not have a natural death law. The
stroke is a fairly massive one involving the dominant hemisphere and is likely to leave Mrs. B unable to speak
and paralyzed on the right side. The physician believes that Mrs. B can probably be salvaged with the use of
aggressive medical care. He also believes she is destined to spend her remaining years in a nursing home. At this
point in her treatment she has developed pneumonia. If he were to fail to treat that pneumonia, she would die. He
is unclear as to what he should do given the circumstances.
According to our textbook, advance directives were originally created and advocated by right to die groups such as the Choice in Dying Corporation. The essential purpose of advance directives is to allow people to receive the specific medical treatment they want, or to refuse the medical treatment they do not want, during a time in which a person would otherwise be incapable of expressing their desires.
In order to accomplish this, advance directives now consist of two general areas of concentration. The first is the area of Instruction Directives. In this section of the advance directive, the person writing the directive specifies his or her desires in print. Here a person may say, for instance, that he or she does not want to be put on a respirator in a given circumstance, or does not want blood transfusions under any circumstance, etc. Many states have forms on which specific treatments are listed for the person creating the document. All states, however, recommend that the person make additions to this section in which they explain particular choices and in which other desires for medical treatment can be expressed.
The second area of focus in a typical advance directive is the section in which a proxy, surrogate, or agent is appointed. What this means is that the individual writing the advance directive appoints a specific person to act as a voice in a situation in which the writer cannot express his/her desires. This is sometimes called the Durable Power of Attorney for Health Care. Once an agent is appointed, this person does not have the authority to make medical decisions until it has been declared that the person who appointed the agent is incapable of expressing his/her own wishes. Furthermore, this proxy is not given the authority to make decisions contrary to what is clearly expressed by the author of the advance directive in the written portion of the document. It is recommended that at least one other alternate agent be appointed in case something should make the initial agent unable to act competently at the appropriate time.
Furthermore, there are some legal guidelines as to who can be appointed as a proxy, or agent. To avoid potential conflicts of interest, the appointed agent cannot be an employee of a health care facility unless that person is also related to the author of the document by blood or marriage.
Finally, to make an advance directive a legal document, most states require that it be signed in the presence of two competent adult witnesses who are not related to, or directly related to the health care of, the person creating the document. In order to cancel an advance directive, the person who created it can simply destroy the document. It is important, however, that the person also make it known to their doctor and family members that they have changed their desires.
Many positive aspects concerning advance directives exist. One of the most important being the fact that the process of actually establishing a directive can create a "roadmap" for expressing thoughts and feelings about life, death, and treatment options in an established, formal manner. Furthermore, since different people have widely-varying beliefs and values, an advance directive can provide direction of care and allow an individual to maintain decisional control at a time of decreased competence or consciousness. The formation of an advance directive can also relieve family stress at a time of emotional struggle. If default decision makers, who could be more than one person (such as parents), are unable to agree, family consent could be undermined. This could place decisional authority in the hands of health care providers or the courts.
In contrast to these positives, a few negatives exist in regard to the establishment and use of advance directives. Generally, directives are too procedure-oriented. Even though a major purpose of an advance directive is to convey thoughts, attitudes, values, and beliefs about what matters, or will matter, at a time of decisional incompetence, many directives provide little evidence as to the actual priorities of an individual. Also, directives generally require substantial interpretation. Every situation cannot possibly be considered when establishing a directive, so surrogates and health care providers will, many times, still have to guess about what a patient really wants. If someone assumes that a directive thoroughly explains his wishes, without further communication, he is mistaken. During these occasions, an advance directive may prove to be ineffective when needed most. Also, if a health care provider assumes an advance directive is a hospice-type "do not resuscitate (DNR)" directive, the mere fact of having a directive may lead to undertreatment. Furthermore, the act of deciding, in advance, whether a certain treatment option would be appropriate, without really knowing what these procedures would yield in an individual circumstance, may not be completely reasonable.
In addition to the positive and negative aspects, it is important to address some general misconceptions that many people have concerning advance directives. One misconception is that a directive is only useful within state boundaries. Although not always true, an advance directive written in one state will generally be considered legal in another state. Even if technical differences exist concerning the establishment of the directive (number of witnesses / need for notarization), health care providers will generally still follow the directive. Many individuals (including some health care providers, as mentioned earlier) equate an advance directive with a DNR order. Even though a directive may be established as a DNR, it could just as easily state that a person wishes to have all possible treatment options explored. In addition, many individuals believe that a lawyer's services are needed to properly format a directive. In truth, most hospitals and health departments provide an acceptable form, which can be completed without legal assistance. A final, widespread misconception is the belief that advance directives are for the elderly. Because, unconsciousness or incompetence can occur at any time a directive can be a useful, effective tool for an adult of any age.
In addition to the technical aspects of establishing a directive, there are psychological, emotional, and logical things to consider. One of the first things that a person should explore when considering an advance directive is determining; What makes life enjoyable for that person and what life would be like without these things. Also, the person should determine, what constitutes an acceptable quality of life. Personal beliefs concerning life and death should then be considered. Also it is important to fully understand treatment options and to differentiate which treatment options are appropriate in response to different medical conditions. Furthermore, in order to choose the most appropriate surrogate, it is necessary to fully understand the role of an agent. An agent must be emotionally strong enough to perform the duty of either ensuring that the wishes of the patient are met or deciding what the patient would want in times when wishes are not fully known. Finally, it is essential to consistently communicate the full meaning of the ideas expressed in the directive with family members, friends, and personal health care providers. Because no directive can be all-encompassing, clear communication of wants, beliefs, and values can, in many respects, be more important than the actual words in the directive.
There are several problematic issues that may surface without appropriate communication. For instance, in the case study presented in class we examined whether or not living will that was written 10 years before and never discussed again can be considered morally and legally binding. As we determined during class discussion, advance directives shouldn’t be viewed as documents that are discussed, written, signed and then locked away. It should be a process thought of as advance care planning.
Certain ethical dilemmas are inherent when determining appropriate health care for an individual that is incompetent. Primarily, the act of determining incompetence is, itself, controversial. Although competency can be generally defined as the capacity to understand, communicate, reason, deliberate, and have and apply a set of values; deciding when an individual lacks these abilities is difficult. Furthermore, an individual may lack these abilities to a varying degree and hence be competent to make one decision and not another. Also, there is controversy in relation to how surrogates decide. Even if the wishes of a patient were properly communicated, actually making a decision about appropriate care for another person is wrought with internal struggle.
The following case presents some of the positive and negative aspects that arise with advance directives. The Martha DeGrella case was the first "right to die" case to reach the Kentucky Supreme Courts. Martha DeGrella was in an irreversible vegetative state that was brought on by severe beating. On many previous occasions, Martha had verbally stated she did not want extraordinary means to prolong her life if she ever were in such a situation. Martha’s mother, who served as her surrogate-decision maker, wished to discontinue Martha from the artificial nutrition and hydration because she knew that Martha would not want to be kept alive in such a vegetative state.
The reason this was brought to court was due to the fact that the attending doctors feared legal and criminal sanctions if they followed the mother’s wishes. Therefore, the doctors required a court authorization to remove the artificial nutrition and hydration. The two major issues of the case were to determine if people have the right to choose to live or die, and if verbal statements can be exercised through a surrogate. After many days passed, the court authorized the mother to order the life-sustaining treatments be discontinued. In order for the court to come to this decision they had to determine if Martha was competent when she verbally stated her wishes. The court did find her competent when she stated she did not want extraordinary means to prolong her life. Another interesting determination was that verbal statements can be exercised through a surrogate. In fact, all states, except New York and Missouri, allow a patient’s family or guardian to exercise judgment as to what the patient would wish. However, Kentucky Law states that "oral revocation of an advance directive be in the presence of two adults, one of them a health care provider".
Unfortunately, Martha did not have an advance directive and this caused some extra hardships on the family and others involved. If Martha had previously formulated an advance directive this situation may have caused less stress on Martha’ s family. For instance, the family would not have had to worry about court authorization for the doctors to follow Martha’s wishes. In fact, Kentucky Law "exempts health care providers from criminal liability for complying with a living will directive". Therefore, if Martha had had an advance directive the doctors would not require a court authorization. Another positive that arises out of advance directives is that Martha could have specified certain treatments for herself if she were ever in such a vegetative state. This way the doctors and family could have better understood Martha’s wishes and would have been able to abide by her wishes more closely. Finally, Martha could have been saved from the artificial nutrition and hydration in the first place if she had had an advance directive. The doctor would have originally known Martha’s wishes and saved her from any further pain.
In response to the comments from the class:
Based upon the feedback that we received, the majority of the class felt that we did a good job. They seemed to feel that our presentation was informative, interesting and clearly stated. However, we agree that the usage of more overheads would have been beneficial. As some of our classmates indicated that we should have presented an actual copy of an advance directive, one idea would have been to put an advance directive on an overhead. One interesting idea that we had not considered would have been to speak with someone who has an advance directive. One of our classmates wondered what our opinions were concerning advance directives after we had completed our research. Now that we are finished, we all agree that we would be more likely to create advance directives for ourselves.
Advance Directives. www.ama-assn.org.
AARP Webplace. Advance Directives: How Do I Get Started? www.aarp.org.
Charles P. Sabatino, ABA Commission on Legal Problems of the Elderly, 10 Legal Myths About Advance Medical Directives. www.abanet.org.
Kentucky Database of Governmental Records. Living Will 858 S.W. 2D 698
Kentucky Law KRS 311.550 to 311.620, "Kentucky Medical and Osteopathic Practice Act of 1972."
Philip Hebert, Doing Right: A Practical Guide to Ethics for Medical Trainees & Physicians. (Oxford U. Press, 1996)
Steven W. Rickard, Advance Medical Directives: Your Wishes for Future Medical Care. (Kraves Communications, 1996)
Thomas A. Mappes and David DeGrazia, Biomedical Ethics, 4th Edition. (McGraw-Hill, 1996)