ADVANCE DIRECTIVES AND OTHER END OF LIFE DECISIONS
SOURCE: Dept. of Otolaryngology, UTMB, Grand Rounds
DATE: Feb. 28, 1996
RESIDENT PHYSICIAN: Rusty Stevens, M.D.
FACULTY: Francis B. Quinn, Jr., M.D.
SERIES EDITOR: Francis B. Quinn, Jr., M.D.

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"This material was prepared by resident physicians in partial fulfillment of educational requirements established for the Postgraduate Training Program of the UTMB Department of Otolaryngology/Head and Neck Surgery and was not intended for clinical use in its present form. It was prepared for the purpose of stimulating group discussion in a conference setting. No warranties, either express or implied, are made with respect to its accuracy, completeness, or timeliness. The material does not necessarily reflect the current or past opinions of members of the UTMB faculty and should not be used for purposes of diagnosis or treatment without consulting appropriate literature sources and informed professional opinion."

Introduction:

Most physicians have at one time or another been involved in the care of a terminally ill patient near death. Often these patients become unable to competently make the complicated decisions surrounding the question of when to withhold or withdraw life sustaining technology. It is during these times that both physicians and family members often become uncomfortable as they make decisions based on what they believe the patient would want. The purpose of this presentation is to provide information about the legal issues surrounding end of life decisions as well as review specific UTMB policies related to this topic.

History of the legal aspect to end of life decisions:

As medical technology has increased over recent decades, so too has the complexity of end of life decisions. Initially these questions were taken to the courts in individual cases and case law developed. With the celebrated case of Nancy Quinlan in the 1970's, the public became acutely aware of and concerned about the legal and ethical issues associated with a prolonged death. From these concerns, legislation began to develop in many states to provide patients with more control over their own death. Both case law and legislative law will be discussed.

Case Law related to end of life decisions:

Case law (usually civil but occasionally criminal) has been based in large part on the first two principles of bioethics which are autonomy and beneficence.(2) The principle of autonomy maintains that a patients wishes should be honored at all times. No other person or institution should attempt to intervene, even if the decision is not in the patient's best interest. The principle of beneficence states that what is "best" for the patient should be attained (i.e. highest level of medical care), regardless of the patients or others desires. When these principles conflict, the courts usually follow the principle of autonomy as long as the patients wishes can be reasonably established. In the case of Bouvia v. California Superior Court, the court upheld a competent 28 year old arthritic quadraplegic's right to refuse oral feedings and have her nasogastric feeding tube removed. In this case, the court actually upheld the patient's right to dictate care surrounding her death by requiring the hospital to continue to treat her and provide pain control while she starved herself.

In addition to case law, this principle has been upheld by several organized committees formed to develop policy related to death and dying. In March 1986, the Council on Ethical and Judicial Affairs of the American Medical Association declared: "The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the choice of the patient, or his family or legal representative if the patient is incompetent to act in his own behalf, should prevail". A Presidential Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research determined: "The voluntary choice of a competent and informed patient should determine whether or not life-sustaining therapy will be undertaken, just as such choices provide the basis for other decisions about medical treatment. ..... Health care professionals serve patients best by maintaining a presumption in favor of sustaining life, while recognizing that competent patients are entitled to choose to forego any treatments, including those that sustain life."

Finally, the principle of autonomy can still be applied even if the patient becomes incompetent and can no longer directly indicate his wishes. This is accomplished through a process called "substituted judgement" which essentially is an effort to determine what the patient would do if he were still competent. This is often complicated and requires knowledge of the patient's past decisions as well as their beliefs and religion. The patient's family is usually the most reliable source for this information. Caution should be exercised when handling an end of life situation in this manner because of its speculative nature as well as its foundation in case law. For example, in the case of Barber v. California Supreme Court, two attending physicians were convicted of murder after they ordered feedings discontinued (at the family's request) for a patient in a persistent vegetative state. The case was brought to the attention of the District Attorney by a nurse involved in the patient's care who disagreed with the decision to discontinue the feedings. Although the convictions were overturned on appeal, the case illustrates well the hazards of depending on case law and is a stark contrast to the decision in Bouvia v. California Superior Court.

Legislation related to end of life decisions:

A more precise way for patients to ensure that their wishes are known and followed is to issue an advance directive. An advance directive is defined as a written instruction, such as a living will (directive to physician in Texas) or durable power of attorney for health care recognized under state law, which relates to the provision of care when the individual is incapacitated. Advance directives are derived primarily from legislative law that has been passed since the widely publicized case of Nancy Quinlan.6 These laws differ widely from state to state but in general, as they have been amended, have become more "user friendly" for both patients and physicians. Additionally, they provide a much clearer and well defined legal roadmap through these difficult situations. The specifics of applicable Federal and Texas law will be discussed below.

Patient Self-Determination Act:

The federal Patient Self-Determination Act became effective in December of 1991 and was created to ensure that patients were informed of their right to accept or refuse medical treatment and their right to execute an advance directive.3 The Act requires that written information concerning these rights be given to all adult patients upon admission to the hospital or nursing home, enrollment in a HMO, or upon receiving initial care from a home health agency or hospice program. Compliance with the Act is required for participation in the Medicare program.

Additionally, the hospital is required to document in the patient's medical record whether or not the patient choose to issue an advance directive and must have a written policy not to condition the provision of care based on this decision. Hospitals must also have programs to educate staff as well as the community on issues concerning advance directives.

Texas Natural Death Act (TNDA):

This Act, initially passed in 1977 and subsequently amended several times, provides for the execution of a Directive to Physicians (Living Will) through which a person can instruct his physician in advance to withhold or withdraw artificial means of life support when the application of such measures serves only to postpone the process of dying. To become effective, the Directive must be signed by the declarant and witnessed by two qualified witnesses. To protect the patient, there are very clear requirements for being a witness. The witness must not be related by blood or marriage and must not have a claim to the declarant's estate. The patient's attending physician and the physician's employees as well as hospital employees if they are involved in the patient's care or the hospital's finances are excluded from being witnesses. Also other patients are not qualified witnesses. A Directive may be given by verbal or other nonwritten means as long as the attending physician as well as two qualified witnesses are present. This should be documented and signed in the chart.

Once signed, the Directive only becomes operative when the patient is diagnosed and certified in writing by two physicians (one being the attending physician) to have a terminal condition. The Act defines terminal condition as an incurable or irreversible condition caused by injury, disease or illness that would produce death without the application of life-sustaining procedures, according to reasonable medical judgement, and in which the application of these procedures serves only to postpone the moment of death. Life-sustaining procedures are defined as artificial measures to restore vital functions that, if not restored, would lead to death in a relatively short time. The act makes clear that medication or procedures performed to provide comfort or alleviate pain are not included as "life- sustaining" procedures.

The TNDA also provides for cases in which an incapacitated, terminally ill patient has not issued an advance directive of any kind. In these situations, a legal guardian or family members, in conjunction with the attending physician, may make decisions regarding withholding or withdrawal of life-sustaining care. If no guardian was named, two family members(if available) and the physician may make decisions in the presence of two qualified witnesses. The order of priority for family members is spouse, adult children, parents, nearest living relative. The requirements for witnesses are the same as for a Directive to Physicians.

The TNDA also protects patients and physicians in several ways. First, it ensures that a patient cannot be discriminated against in any way for signing or for refusing to sign a directive. This includes both actual medical care as well as insurance issues. Secondly, a physician is protected for civil or criminal action as long as there is no evidence of negligence. The law specifically states that removing life support systems under the terms of a directive does not constitute assisting suicide. If a physician or health care facility has religious or ethical beliefs that do not allow compliance with the patient's Directive, they are not required to do so. However, the patient should be informed in a timely fashion and attempts made to transfer their care to another physician or facility that will honor the directive.

A Directive to Physicians may be revoked at any time regardless of the patient's mental status by any verbal or written communication to the attending physician. The expressed desire for life-sustaining procedures will always, at any time, override any advance directive. The physician will then ensure that all pages of the Directive are stamped with "void".

Durable Power of Attorney for Health Care:

A second type of advance directive is the Durable Power of Attorney for Health Care (DPAHC). This is a broader directive that allows for the selection of an agent to make health care decisions for the patient(principal) in the event they become incompetent.(1) Day-to-day health care decisions can be made by the agent as well as decisions regarding life-sustaining procedures. A DPAHC also differs from a Directive to Physicians in that the principal does not have to be suffering from a terminal illness for it to become active. Once signed by the principal and two qualified witnesses, a DPAHC becomes active when the principal's attending physician states in writing that in his/her opinion, the principal lacks the capacity to make health care decisions. If the principal regains capacity at a later date, the DPAHC becomes inactive again. Again for the patients protection, there are requirements to be an agent. They should be someone close to the principal who knows the principal's wishes and beliefs as well as someone the principal trust to make decisions in his/her best interest. The agent must be at least 18 years of age and cannot be the principal's attending physician or residential care provider. Employees of the physician or residential care provider are also excluded unless related to the principal. An alternate agent may also be designated. In addition to the authority to make decisions for the principal, the agent may review or request release of the principal's medical records and may consent to most medical procedures.

The agent may not consent to voluntary inpatient mental health services, convulsive treatment, psychosurgery, abortion, or the discontinuance of care intended to provide comfort. The agent is expected to make decisions based on his/her knowledge of the principal's wishes, or if not known, the agent's assessment of the principal's best interest. It is not the physicians duty to confirm the agent's compliance with these instructions. As with a Directive to Physicians, a DPAHC may be revoked by any oral or written act by the patient indicating a desire to revoke the document. The principal may revoke the DPAHC for any reason regardless of his/her mental status. Additionally, a DPAHC is revoked if a subsequent document is executed or by divorce if the spouse was the agent.

Special circumstances:

If a patient has both a DPAHC as well as a Directive to Physicians, the document executed later in time controls. However, if a patient wants to have an agent to make daily care decisions but wants to make sure that life-sustaining procedures are not requested by the agent, the DPAHC can specify that the directive to physicians must be followed.

The adult spouse, parents or legal guardian of a person less then 18 years of age may execute a Directive to Physicians on behalf of the minor. However, the oral desires of the minor should supersede a directive completed on the minors behalf. Durable Power of Attorney for Health Care does not apply to minors.

A pregnant woman may execute either advance directive at any time but life-sustaining procedures may not be withheld or withdrawn during pregnancy.

TDCJ patients are given the same considerations regarding advance directives as other adult patients. The TDCJ Health Services liaison physician and administrator should be notified.

Talking to a patient About advance directives:

Although most people agree with the concept of advance directives, only a small portion of the population has actually completed a directive. While there are many reasons for this discrepancy, one likely cause is that physicians often fail to talk to their patients about directives until they become critically ill. As mentioned above, there are strong reasons for doctors to have patients complete a directive. Some primary care physicians have taken initiative and make a special point to have a detailed discussion on the topic with their healthy patients.4 Although this approach is not practical for most otolaryngology patients, there are certain patients in whom this approach might be helpful (i.e. Cancer patients). Regardless of the timing, if advance directives are discussed, the physician should take time to ensure that the patient is given the information in an unbiased, thoughtful and considerate way.

Specific UTMB procedures:

Initiating Advance Directives:

Within 24 hours of admission, the adult inpatient will receive (usually from the admitting RN) written information regarding his/her rights under the federal Patient Self- Determination Act as well as a brochure explaining both types of advance directives. The patient will also be asked whether they have an advance directive and their answer will be recorded in their chart. If the patient has further questions, they will be directed to appropriate assistance. Appropriate forms for execution of an advance directive are also provided. (NOTE: Witness qualifications are included on each form.)

Withholding or withdrawing life support form a patient (WLS):

The patient's terminal condition(as defined above) must be certified by two physicians (including one faculty) who have both examined the patient. If the faculty physician is not available from 5 p.m. to 8 a.m., a telephone certification may be given but the progress note must be countersigned the next day. Otherwise, a dated and timed statement of the patient's condition will be entered in the progress notes and should include:

The patient's physician will obtain one of the following:

Procedures for Terminally Ill Patient (This document is used if the patient has not completed an advance directive)

The Progress note will state who requested withdrawal or withholding life support. If this is someone other than the patient, there should also be documentation that the patient is unable to communicate.

The physician will attempt to confirm that the patient's wishes have not changed and that a previously issued directive has not been revoked.

The Do Not Resuscitate orders may be written by either a resident or faculty. Likewise, withdrawal of Life Support orders may be by either faculty or residents and should state which measures are to be discontinued.

Pronouncement of Death:


NOTE: Once death has been established, life support can be withdrawn without an advance directive or the family's approval.

Conclusion:

End of life decisions and the decision to initiate or withdraw life-sustaining technology can be difficult. Although it is generally held that the individual should make these decisions, this is not always possible and is not always supported by case law. Legislation in recent years has been passed to provide the public with vehicles to make these decisions in advance. The two main types of advance directives are directives to physicians (living will) and durable power of attorney for health care. In general these provide better legal direction as well as protection for both patient and physician. This in turn should provide a more relaxed doctor-patient relationship as well as ensuring that the patient's desires are carried out.

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