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Advance Directives

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Advance directives are usually written documents designed to allow competent patients the opportunity to guide future health care decisions in the event that they are unable to participate directly in medical decision making. (For related discussion, see Advance Care Planning and Termination of Life-Sustaining Treatment.)

What types of advance directives are currently available?

 A 1991 federal law, the Patient Self-Determination Act, requires that patients are informed about their right to participate in health care decisions, including their right to have an advance directive. Advance directives fall into two broad categories: instructive and proxy. Instructive directives allow for preferences regarding the provision of particular therapies or classes of therapies. Living wills are the most common examples of instructive directives, but other types of instructive directives, such as no transfusion and no CPR directives are also employed. The proxy directive, generally a Durable Power of Attorney for Health Care (DPAHC), allows for the designation of a surrogate medical decision maker of the patient's choosing. This surrogate decision maker makes medical care decisions for the patient in the event she is incapacitated.

Why are advance directives important to medical care?

 The major argument for the use of instructive directives, such as a living will, is that it allows an individual to participate indirectly in future medical care decisions even if they become decisionally incapacitated, i.e., unable to make informed decisions. Instructive directives may extend individual autonomy and help ensure that future care is consistent with previous desires. The living will was created to help prevent unwanted and ultimately futile invasive medical care at the end-of-life.

When patients becomes incapacitated someone else will be required to make medical decisions regarding their care. Generally a spouse is the legal surrogate. If no spouse is available, the state law designates the order of surrogate decision makers, usually other family members. By designating a DPAHC, the patient's choice of a surrogate decision maker supersedes that of the state. A legal surrogate is particularly valuable for persons in non-traditional relationships or without close family. The DPAHC need not be a relative of the patient, though this person should have close knowledge of the patient's wishes and views.

Are advance directives legally binding?

Advance directives are recognized in one form or another by legislative action in all 50 states (in Washington, see RCW 11.94). If the directive is constructed according to the outlines provided by pertinent state legislation, they can be considered legally binding. In questionable cases, the medical center's attorney or ethics advisory committee can provide guidance on how to proceed (see also the topics Law and Ethics and Ethics Committees).

When should I refer to a patient's advance directive?

 It is best to ask a patient early on in his care if he has a living will, or other form of advance directives. Not only does this information get included in the patient's chart, but by raising the issue, the patient has an opportunity to clarify his wishes with the care providers and his family (see Advance Care Planning).

However, advance directives take effect only in situations where a patient is unable to participate directly in medical decision making. Appeals to living wills and surrogate decision makers are ethically and legally inappropriate when individuals remain competent to guide their own care. The assessment of decisional incapacity is often difficult and may involve a psychiatric evaluation and, at times, a legal determination.

Some directives are written to apply only in particular clinical situations, such as when the patient has a "terminal" condition or an "incurable" illness. These ambiguous terms mean that directives must be interpreted by caregivers. More recent forms of instructive directives have attempted to overcome this ambiguity by either addressing specific interventions (e.g. blood transfusions or CPR) that are to be prohibited in all clinical contexts.

What if a patient changes her mind?

As long as a patient remains competent to participate in medical decisions, both documents are revocable. Informed decisions by competent patients always supersede any written directive.

What if the family disagrees with a patient's living will?

 If there is a disagreement about either the interpretation or the authority of a patient's living will, the medical team should meet with the family and clarify what is at issue. The team should explore the family's rationale for disagreeing with the living will. Do they have a different idea of what should be done? Do they have a different impression of what would be in the patient's best interests, given her values and commitments? Or does the family disagree with the physician's interpretation of the living will?

These are complex and sensitive situations and a careful dialogue can usually surface many other fears and concerns. However, if the family merely does not like what the patient has requested, they do not have much ethical power to sway the team. If the disagreement is based on new knowledge, substituted judgment, or recognition that the medical team has misinterpreted the living will, the family has much more say in the situation. If no agreement is reached, the hospital's Ethics Committee should be consulted.

How should I interpret a patient's advance directive?

Living wills generally are written in ambiguous terms and demand interpretation by providers. Terms like "extraordinary means" and "unnaturally prolonging my life" need to be placed in context of the present patient's values in order to be meaningfully understood. More recent forms of instructive directives have attempted to overcome this ambiguity by addressing specific interventions (e.g., blood transfusions or CPR) to be withheld. The DPAHC or a close family member often can help the care team reach an understanding about what the patient would have wanted. Of course, physician-patient dialogue is the best guide for developing a personalized advance directive.

What are the limitations of living wills?

 Living wills cannot cover all conceivable end-of-life decisions. There is too much variability in clinical decisionmaking to make an all-encompassing living will possible. Persons who have written or are considering writing advance directives should be made aware of the fact that these documents are insufficient to ensure that all decisions regarding care at the end-of-life will be made in accordance with their written wishes. They should be strongly encouraged to communicate preferences and values to both their medical providers and family/surrogate decision makers.

Another potential limitation of advance directives is possible changes in the patient's preferences over time or circumstance. A living will may become inconsistent with the patient's revised views about quality of life or other outcomes. This is yet another reason to recommend that patients communicate with their physicians and family members about their end-of-life wishes.

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Core clerkship material for: Surgery

Mark R. Tonelli, MD
Assistant Professor, Pulmonary and Critical Care Medicine

With Clarence H. Braddock III, MD, MPH, and Kelly A. Edwards, MA

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Last date modified: April 11, 2008