Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo are names of individuals who highlight the importance of advance directive completion prior to a crisis. All three women’s lives were cut short by some unexpected tragedy, and due to legal wrangling over their end-of-life treatment, their families paid a high emotional price and their dying processes were subject to lengthy court battles. These cases spurred ethical debates over a patient’s right to refuse life-sustaining treatment, the role of the family in end-of-life decision making, and medicine’s technological imperative. In response, numerous public policies related to end-of-life decision making were formulated. One such piece of legislation, the Patient Self-Determination Act (PSDA) of 1990 (P.L. 101-508, § 4206), was the first federal statute to focus on the right of adult patients to refuse life-sustaining medical treatment. The PSDA mandates that health care organizations that receive federal health care dollars must inform patients about their rights to formulate advance directives, provide community and staff education about the documents, and maintain policies pertaining to advance directives.

The passage of the PSDA, patient and family concern regarding use of life-sustaining technology, and medical professionals’ concern for patient welfare and legal liability resulted in a plethora of research on end-of-life decision making and advance directives during the 1990s. The seminal study was the $30 million SUPPORT study (The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment), designed to investigate and improve end-of-life decision making and reduce the frequency of prolonged and painful death (SUPPORT Principal Investigators, 1995). This study suggested that clinical outcomes (e.g., timing of do-not-resuscitate [DNR] orders, time spent in the intensive care unit) were relatively uninfluenced by the presence of an advance directive in the patient’s chart. Literature in the field has evolved to focus on the process of advance care planning instead of advance directive documents (e.g., Karel, Powell, & Cantor, 2004; Norlander & McSteen, 2000; Prendergast, 2001; Quill, 2000; Tulsky, 2005). For clinicians who work with patients with advanced illness, the message is clear—advance directives, executed without appropriate, timely, meaningful, and inclusive advance care planning discussions, are not a means to patient-centered, holistic care at end-of-life.

Every state has legislation that governs the implementation and execution of written advance directives, and it is imperative that clinicians thoroughly acquaint themselves with their state policies. The Web site for Compassion and Choices provides copies of advance directive forms for each state that can be downloaded (compassionandchoices.org/ad). Typically, advance directives take on three forms: oral directives, a written instructional directive (e.g., living will or health care directive), and a durable power of attorney for health care (health care proxy in some states) (Lo, 2004). In addition, 37 states have statutes that grant family members, in a stated order of priority, the right to make medical decisions for incapacitated patients in the absence of advance directives (Hosay, 2003). Advance directives are firmly rooted in the principle of patient self-determination and the notion of extended autonomy; even when patients are unable to express their preferences, their individual choices can be given voice via a written document or a decision-making surrogate who is familiar with their wishes.

Oral directives consist of discussions that patients have with family members, loved ones, and health care professionals about end-of-life treatment preferences. More common than written directives (Emanuel, Barry, Stoekler et al., 1991; Lo & Steinbrook, 2004), such discussions may not meet the “clear and convincing” evidentiary standard required by some advance directive statutes such as those in New York and Missouri (Lo, 2004). In any discussions that patients have with health care providers, it is important that the substantive content regarding relevant goals, values, and stated treatment preferences be recorded in the patient’s record for future reference and to enhance communication about patient preferences among multiple providers.

Living wills are documents that explicitly state patient treatment preferences. Most commonly, treatments to be avoided at end-of-life are explicated (e.g., no artificial nutrition or hydration), but the documents can also specify types of desired treatments (e.g., adequate pain control medication). Living wills generally specify treatment preferences related to DNR orders, life-sustaining therapies including mechanical ventilation, feeding tubes, antibiotics, hemodialysis, and pain control (Quill, 2000). Estimates indicate that fewer than 25% of U.S. adults have a written advance directive (Emanuel et al., 1991; Hanson & Rodgman, 1996; Lo, 2004; Salmond & David, 2005), and the literature enumerates numerous potential problems with the living will. For example, the language used may be vague and hard to interpret (Happ, Capezuti, Strumpf et al., 2002; Lynn, 1991); patients may be hardpressed to anticipate all medical scenarios and may write directives that do not suit their best interests under certain circumstances (Lo, 2004; Lynn, 1991); the documents may not be available when needed (Tulsky, 2005); discussions about end-of-life treatment preferences are uncommon among patients and providers (Lo, 2004); and clinicians may not provide care as indicated in the written directive (Teno, Licks, Lynn et al., 1997).

On the other hand, a living will promulgated from a thoughtful and appropriate advance care planning process may indeed be helpful. As previously discussed, evidence suggests that advance directives have the potential to reduce family stress and decrease regret over medical decisions made on behalf of the patient (Davis et al., 2005; Tilden et al., 2001). A written document may also be helpful if there is family conflict about the course of treatment, if there is disagreement between the patient and health care providers, or when a patient wants to appoint someone outside of the definition of the traditional family (e.g., friend, same-sex partner) (Tulsky, 2005).

In addition to completing a living will, capacitated patients may choose to officially appoint a health care proxy or decision-making surrogate. Documenting one’s choice for a decision-making surrogate has been described as being “more flexible and comprehensive than a living will” (Lo, 2004, p. 317). Decision-making surrogates are able to assess current medical realities in the context of the patient’s stated preferences to (theoretically) arrive at medically sound decisions that honor the patient’s wishes. It is important that patients thoughtfully choose a decision-making surrogate. In helping patients to choose a proxy, clinicians can ask, “Who would you want to make decisions for you if something happened and you were unable to make decisions about your care?” If the patient has someone in mind, it can be important to determine if the decision-making surrogate has been informed about the choice: “Have you spoken with this person about this? Have you informed other important people in your life that this is your wish?”

When patients complete advance directives, they should be informed that they are free to change the documents at any time. Advance care planning discussions do not end when a living will or durable power of attorney for health care has been completed. Discussions about end-of-life treatment wishes should be revisited if there is a significant change in the patient’s condition or life circumstances. Patients can and do change their minds about end-of-life treatment, especially when there are significant changes in their health status. If patients do change their advance directives, the old copies should be destroyed and replaced with updated documents. Medical records should reflect the most recent version, and other health care professionals involved in the patient’s care should be made aware of the status of the changes. Decision-making surrogates should receive the most current copy of the documents as well.

Although not an advance directive, clinicians should be aware of the POLST (Physician Orders for Life Sustaining Treatment) form used in various states and locales across the country to assist health care professionals in honoring the end-of-life care wishes of patients. The POLST translates a patient’s advance directive into a set of physician’s orders on a standardized form that documents end-of-life treatment preferences. This set of physician orders is intended to be portable across medical settings and increase the likelihood that a person’s end-of-life care wishes will be implemented. The POLST form was developed in Oregon in 1991 and is also used in West Virginia and Washington, as well as in parts of Wisconsin, Pennsylvania, New York, Utah, New Mexico, Michigan, Georgia, and Minnesota (Hickman & Newman, 2005). Evaluation research indicates that the POLST is effective in promoting end-of-life medical care that is congruent with patient wishes (Lee, Brummel-Smith, Meyer, Drew et al., 2000; Meyers, Moore, McGrory et al., 2004; Tolle, Tilden, Nelson et al., 1998). More information about the POLST can be found at www.polst.org.

When patients are unable to make their own medical decisions, clinicians routinely rely on significant others to guide the decision-making process. Working with patients’ family members as decision-making surrogates is a routine aspect of delivering palliative care. The responsibility of surrogate decision making usually falls to the family because of their intimate and longstanding knowledge of the patient’s goals, values, preferences, and best interests. The family is seen as being most concerned with the patient’s welfare and thus is expected to make decisions in the patient’s best interest (Buchanan & Brock, 1989; Chan, 2004). Through the appointment of an informed proxy, patient self-determination is extended in the face of decisional incapacity. To realize this goal of extended patient autonomy, surrogates and family members are routinely called on to use the substituted judgment standard, one of the predominant legal approaches adopted by the courts that regulate the termination of medical treatment of an incapacitated patient (Rhoden, 1988).

This standard mandates that medical decisions for an incapacitated patient be made as that patient would have made them for himself or herself if able and requires that the decision-maker be objective (Buchanan & Brock, 1989; Rhoden, 1988). Substituted judgments can be guided by the content of a living will or previously stated oral directives. As previously discussed, a majority of patients do not complete written documents, and even if a patient does have a living will, a surrogate may be called on to make decisions that are not directly addressed by the document. Thus, surrogates may be required to infer the patient’s treatment predilections from their knowledge of the patient’s character, goals, and values. This process entails a certain amount of imagination and deduction on the part of the surrogate while requiring him or her to be objective, uninfluenced by personal emotions and biases.

The other predominant legal standard that is used by surrogates to arrive at decisions to terminate life-sustaining treatment is the best interests standard. This standard weighs the burdens of the patient’s life in the current state against the benefits of continuing life in that state (Buchanan & Brock, 1989). In order to terminate treatment, the burdens of artificially prolonging a life must clearly and significantly outweigh its benefits. The standard is used when there is little, if any, information about the patient’s treatment preferences, and it calls for an objective judgment as to what best serves the patient’s interests. This objectivity is described in a document produced in 1987 by the New York State Task Force on Life and the Law as “a judgment that is consistent with what most people would decide for themselves under the same circumstances” (Collopy, 1999, p. 41).

The aforementioned judgment standards are assumed to be rational methods of making end-of-life treatment decisions for a significant other (Chan, 2004). In the real world of end-of-life care and surrogate decision making, it is doubtful that most surrogates purely and rationally use either the substituted judgment or best interests standard when arriving at decisions (Berger, 2005; Chan, 2004; Moore, Sparr, Sherman et al., 2003). It has been argued that the distinction between the best interests and substituted judgment standards is not entirely clear (Rhoden, 1988). Substituted judgment requires a consideration of the patient’s character, values, past preferences, and history to make medical decisions that are congruent with what the patient would have wanted; is it possible for a surrogate to make such judgments objectively without one’s personal biases (e.g., love and concern for the patient) affecting the decision? The best interests standard asks the surrogate to consider only the patient’s current condition in order to make a decision that best serves the patient’s current medical interests; how can one appropriately arrive at a decision that promotes the patient’s current interests without considering the patient’s past and making judgments about quality of life concerns (Moore et al., 2003)?

These points illuminate the complexities and difficult realities that clinicians face when developing and implementing end-of-life treatment plans and further emphasize the importance of advance care planning discussions that include the family and/or significant others. When coping with an advanced illness, family members of patients are deeply affected, and their concern, love, and interests are likely to influence the end-of-life decision-making process; this reality runs contrary to the rationality assumed by the substituted judgment and best interests standards. In addition, patients are often concerned about being a burden on their families at end-of-life. Some patients want their family and decision-making surrogates to consider the interests of the collective when making medical decisions on their behalf (Chan, 2004; Moore et al., 2003). Patients can be deeply concerned as to how treatment decisions affect the well-being of the family (Berger, 2005).

It can be posited that the patient’s and family’s interests are “often indistinct, mutual, and reciprocal” (Berger, 2005, p. 3), and this emphasis on the interdependence of the individual and family is seen among various cultural groups. This is not to say that the family’s interests should be paramount to or even be given equal weight with the patient’s interest in all cases but rather that honoring patient’s wishes can include consideration of the decision’s impact on the collective. As part of the advance care planning process, providers can address this issue with patients: “What do you want your surrogate to consider when he or she makes medical decisions for you?” “How much input do you want your family to have in decisions that are made about your care?” Other questions to assess the impact of the illness on the patient’s family from the perspective of the patient include “How is your family handling your illness?” (Quill, 2000) and “What are your loved one’s fears about your illness? What are their hopes?” (Moore, 2005a). Clinicians may choose to pose the same types of question to family members. These discussions can help health care professionals better understand family dynamics and the degree to which the family is considering the patient’s interests as well as their own in the context of end-of-life decision making.

The ultimate goals of the advance care planning process are to facilitate self-determined life closure and to help patients have a “good death.” Realizing these goals requires effort on the parts of patients, clinicians, and family members to communicate openly, honestly, and consistently. All patients have a unique past and present, values and goals that are meaningful to them, connections to others, and futures that can unfold in ways that finish the narration of their life in a coherent and consistent manner. To perceive patients in this way acknowledges them as a person, not just as a patient with a collection of signs and symptoms. Health care professionals who partner with patients, surrogates, and family members in the advance care planning process can help to ensure that a patient’s personhood is honored in the last phase of life.