Friday, 8 November 2013

Geoff Mckay - Advance Directives

Definition: Advance directives are statements by competent patients that indicate who should act as a surrogate decision-maker or what interventions they would accept or refuse if they lost decision-making capacity. There are several forms of advance directives:

Oral statements to family members or friends
Oral statements to physicians
Written advance directives: living wills or health care proxies
When do physicians rely on advance directives?

Recall from the module on decision making capacity that illness may result in an individual’s loss of the ability to make decisions regarding medical care. Once a physician determines that a patient lacks decision-making capacity, it is important to decide 1) what standards should be used in making medical decisions for the patient and 2) who should act as a surrogate decision-maker for the patient. Several devices may be used to help decide on standards for making medical decisions for the patient; if available, advance directives are the primary means of determining standards for the patient’s medical care.

Why do physicians rely on advance directives?

Advance directives help to preserve a patient’s autonomy even when he/she is no longer capable of making informed decisions. Since the patient gives informed consent and expresses his/her preferences while still competent, advance directives provide a means of projecting autonomy into the future; they allowing the patient’s preferences and values to guide care even when he/she lacks decision-making capacity.  In addition, advance directives may provide guidance and help alleviate stress on family members who have to make decisions for the patient.

What are the different types of advance directives?

1. Oral statements to family and friends: This is the most common form of advance directive and is frequently used to guide decisions for patients. The problem with such statements is that patients may make comments without intending them to direct future care, or they may state preferences without thinking about them carefully. Family or friends may also not recall the statements accurately or dispute the meaning. A few states, such as New York and Missouri, restrict the use of oral directives unless they are specific about the type of treatment or intervention to be implemented or refused. However, most states have accepted oral directives to family and friends as an acceptable basis for medical decisions.
Following are characteristics of reliable oral directives:

The patient’s decision was informed (i.e., the patient possessed and understood all relevant information when making the decision.)
The directive stated the patient’s specific treatment preferences in various clinical situations rather than general preferences.
The directive was repeated over time, in different situations, and to various individuals.
2. Oral statements to physician:  Discussions with the physician about prospective treatments are the second most common form of advance directives. The standards for determining whether the directive is trustworthy are the same as for statements to family and friends. Oral directives to physicians are much less problematic than either oral statements to friends and family or written advance directives. The physician can verify whether the directive was informed and is able to gain a more complete sense of the patient’s wishes in one-on-one conversation.

3. Written advance directives: There are two types of written directives – living wills and health care proxies. Both must be witnessed or notarized and are accepted by almost all states as legal documents. The courts consider written directives to be more reliable evidence of the patient’s wishes than oral statements, although only 5% of patients actually provide written directives.

Living Wills: The patient directs physicians to withhold or withdraw life-sustaining treatments in case the patient develops a terminal condition or falls into a permanent vegetative state. Usually patients may only refuse treatments that prolong dying; however, some states do not allow patients to decline artificial nutrition/hydration through living wills. In addition, states may differ on what is considered a “terminal condition”—conditions such as Alzheimer’s and dementia are generally not considered terminal. Since living wills specify particular treatments that can or cannot be applied, they allow for little flexibility in making treatment decisions and do not provide comprehensive guidance.

Health Care Proxies: The patient appoints, in writing, an agent to make medical decisions in the event that he/she loses decision-making capacity. This agent, called a health care proxy, will have decision-making priority over all other possible surrogates. The proxy has authority to make decisions in all situations in which the patient is incapable of making health decisions, not only in case of terminal illness. The proxy is required to try to be consistent with the patient’s known values or expressed decisions or to act in the best interests of the patient. There are some limitations related to conflict of interest on who can serve as a health care proxy. For instance, in most states, the treating physicians cannot be the health care proxy.  One of the most effective ways to structure advance directives is to appoint a health care proxy and to supplement this with a living will that specifies particular treatments that would or would not be acceptable under various circumstances.  This provides for more flexibility in determining treatments while still allowing for specific directives.

What are some of the problems with advance directives?

Advance directives may not be informed: It is very common for patients to express strong preferences about treatments that they do not fully understand, especially regarding life-sustaining or emergency interventions such as CPR or ventilators. Once a patient has lost decision-making capacity, it is no longer possible to correct any misunderstandings.

Interpretation may be difficult: Advance directives often do not address the exact situation at hand and may require interpretation. Directives often employ vague terminology (e.g., refusing “heroic” interventions) and may describe general preferences that provide little guidance in specific cases. In some cases, they specify treatment preferences for one situation, but the patient develops an entirely different condition.

Advance directives may conflict with the patient’s best interest: Patients make assumptions about the prognosis or life situation when they give advance directives. However, for a variety of reasons, the reality of the situation may be very different from when the patient originally stated his/her intentions. For instance, new medical therapies, changing family situations, development of additional medical conditions, and other factors may mean that prior advance directives are no longer relevant to the patient’s current medical condition.

Patients change their minds: This happens to all of us, all the time in life!  It is not surprising that individuals tend to change their minds regarding life-sustaining treatment
So how do advance directives affect regular interactions with patients?

Talk to your patients about advance directives! Despite some limitations, advance directives allow the patient to express his/her values and beliefs regarding medical care. They also encourage physicians, patients, and patients’ family members to discuss life-sustaining treatments before it is too late, which relieves a great deal of stress once decision-making is required. Studies show that most patients want to discuss advance directives with their physicians before medical crises, and most want the physician to bring up the subject.

Informing patients about advance directives is a legal requirement in some situations. The Federal Patient Self-Determination Act (1990) requires that all hospitals, nursing homes, and health maintenance organizations that accept Medicaid and Medicare inform patients about their right to provide advance directives at the time of admission or enrollment.

Who should consider forming advance directives?

Physicians should definitely discuss advance directives with terminally ill patients as well as those with a serious chronic illness. Some physicians choose to discuss advance directives with perfectly healthy individuals. It is important to realize that advance directives are not acceptable in some cultures; physicians should respect these beliefs.

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