Physicians should be aware of three key issues on which to advise patients and proxies. First, patients, professionals, and the proxies themselves should understand the proxy’s role. Speaking in place of the patient can take two distinctly different forms. In one form, the patient asks the proxy to represent the patient’s prior wishes and to hold steadfast to these known prior preferences, extrapolating them if necessary to the situation at hand. In the other form, the proxy speaks according to the proxy’s own judgment (2). In this alternative role, the proxy remains more independent of the patient’s stated prior wishes and tries instead to imagine what the patient would have wanted in the circumstances, judge the best interests of the patient, and balance other issues as he or she sees fit. These two modalities can be merged. For instance, a patient may tell a proxy to apply his or her prior wishes, albeit with latitude and taking particular types of unpredictable family issues into consideration (3).

Second, patients and proxies should know that studies have found that proxies often guess the prior wishes of patients inaccurately and, furthermore, that proxies often imagine that the patients’ prior wishes are for more intervention than patients actually select (4). Even a proxy who has had a close relationship with the patient may not be able to make accurate judgments. It is possible that close relationships do not often include discussions about medical aspects of dying, or that patients do not even know their own preferences until they have discussed or faced a relevant matter. It is also possible that proxies face significant emotional issues that may hinder their ability to imagine the patients’ wishes. Regardless, physicians must counsel patients to discuss relevant perspectives explicitly and well in advance of a deteriorating medical situation that may result in incompetence (5).

Third, patients should be aware that friends and family members have their own interests and issues, which may conflict with their role as proxy. Common examples include the difficulty of letting go of the loved patient, the great emotional burden of making life-and-death decisions, the difficulty of finding the extensive time it takes to perform the proxy role well, and the difficulty of choosing how to allocate limited family resources (e.g., to the patient’s medical care vs. the children’s education) (4). Conflicting motivations are inevitable and need not prohibit the proxy role. Nonetheless, the proxy may need help distinguishing different motivations and abiding by those that are most suited to the proxy role.

The history of the development of instructional directives reflects the search for the most valid form of expressing prior wishes. The earliest commonly used instructional directive was the Do Not Resuscitate (DNR) order, written by the physician after discussion with the patient and the family (6). After its proposal in 1976, a set of studies and a culture evolved around the DNR discussion. It is still relevant and can be included in comprehensive advance planning discussions (7). A hazard of isolated DNR discussions is that they occur too
late, either missing the patients who need them or occurring in such “out of the blue” conversations that alarmed patients make decisions without the benefit of settled reflection (8, 9, 10). A more recent approach involves a cluster of doctors’ orders concerning life-sustaining intervention, such as through the Physicians’ Orders for Life-Sustaining Treatment or POLST form (11). This approach can prompt more optimal discussions with patients and families.

An earlier modality for making instructional directives was the living will. This was introduced in 1968 by a lawyer, Louis Kutner. The living will attempted to express the widespread view that heroic levels of technological intervention should be avoided if the patient’s prognosis was hopeless. The statements made in living wills were true enough to the sentiment, but in practice they were insufficient to guide the specific decision making needed in real clinical circumstances. Different interpretations of what constitutes a heroic intervention and what constitutes a hopeless prognosis meant that this early type of living will was liable to bring as much confusion as clarity to the decisions.

Efforts to increase the specificity of living wills began, starting most notably with Sissela Bok’s and Michigan’s living will (12, 13). Thereafter, developments began along two lines: one to better describe the general health-related values of the patient (values histories) and one to formulate ways in which patients could make very specific treatment preference statements (treatment-specific directives) (14, 15). Empirical evidence that general statements cannot predict specific wishes has supported the more balanced view that these two modalities work best together (16, 17, 18). Some patients are inclined to write a free-prose letter encapsulating their wishes. Such letters can be worthwhile, but many patients do not have the writing skills or the specialized expertise that ensures coverage of relevant matters. In such cases, the concurrent use of predrafted documents is to be encouraged. More recently, efforts have been focused on the need to validate predrafted instructional directives, just as any other instrument that seeks to record subjective matters needs to be validated (19). A few forms have been validated, and at least one validated form that is tailored to cancer exists (20, 21, 22). One of the more studied forms, which is generic and adaptable and has been validated in several studies, is the Medical Directive (17, 23, 24, 25, 26). Physicians should provide and advise patients to use validated forms, because using nonvalidated forms risks misrepresentation of patients’ true wishes and can confuse decision making. Validated forms also provide a succinct method of ensuring that patients have considered the major areas that most people need to cover. The use of a validated form as a worksheet for thought and discussion can be as important as its use as a recorded document.

All states and the District of Columbia have statutes that endorse advance directives in one way or another. Some endorse the use of proxies, others endorse the use of instructional directives, and most now endorse both (27). Most state statutes have a corresponding document, which is often available from local health care facilities or state medical organizations. The fundamental purpose of state statutes is to allow the physicians to follow the patient’s wishes without fear of liability. The interests of the patient are served indirectly by protecting physicians who follow patients’ wishes and rendering physicians vulnerable if they do not. Many states specifically honor the statutory documents of other states, although some differences exist, and frequent travellers may wish to have documents from their frequented state bound together with those from their home state.

It is part of common law that competent patients have the right to accept or refuse medical intervention, even life-sustaining intervention. Even casual statements have been honored as sufficient evidence, and this has held true even in the face of national political campaigns (28). Written statements have been explicitly identified as desirable evidence of patients’ preferences (29, 30). Physicians can therefore be assured that patients’ statements carry legal authority whether or not they are recorded in a manner not specifically designed for local state statutes. Statements made in a nonstatutory form can be considered as advisory documents. In this sense, distinctions between legal and “nonlegal” or “illegal” forms in this context are erroneous. A statutory form is legally binding, and a nonstatutory advisory document is also binding if it provides clear evidence of the patient’s wishes. Because statutory forms are written to comply with legal criteria, they are often far less informative than advisory documents, which can address personal values and clinical issues.

The United States’ Patient Self-Determination Act of 1990 requires that patients be asked about the existence of an advance directive at the time of enrollment or admission to a health care facility. The intent of the law was to increase awareness and documentation of advance directives. In addition, the Joint Commission on Accreditation of Health Care Organizations recommends that facilities have arrangements for counseling patients who wish to complete advance directives. Completion of advance directives is best done in the more stable setting of continuing outpatient care, but occasionally their completion in the inpatient setting is unavoidable. Therefore, although minimal compliance with the Patient Self-Determination Act and the recommendations of the Joint Commission require relatively little from physicians, the spirit of both requirements involves thoughtful, longitudinal involvement of the physician and the other members of the interdisciplinary team in discussion with the patient.

The notion that autonomy can be extended into times of incompetence by recording wishes ahead of time is not straightforward. How can anyone know whether the wishes of an incompetent person are represented by previously recorded wishes? What about patients who are incompetent for decision making but are awake and appear to be capable of feelings and wishes, and these apparent wishes differ from the prior wishes? Responding to these two questions, which motivated considerable debate in the advance directive movement, depends on two points. First, the justifying principle for advance directives is surviving interests, rather than the broader principle of autonomy. Second, the condition of the patient in which advance directives pertain unequivocally is wishlessness; equivocal situations can occur when the patient is incompetent but has discernable wishes (31).

Ordinarily, autonomy involves the application of real-time wishes. But because it is impossible to create real-time wishes when there are none, autonomy can be extended only by applying prior wishes. A surviving interest constitutes a distinct form of autonomy and should not be confused with the more general autonomy. Surviving interest, ordinarily a legal term, refers to the right of the individual to determine decisions on matters in which he or she has an overriding interest even after losing the direct ability to act on these matters. The most common example is the estate will, in which individuals exercise their right to determine disposal of their property after death. A related arrangement that relies on a surviving interest concerns the funeral directions by the principal planning for his or her own death. Another example is the organ donor card. The important point is that arrangements predicated on surviving interests do not rely on real-time wishes; they rely on prior wishes. Advance directives rely on prior wishes in just the same way as these more traditional applications of surviving interests. Even when a proxy is instructed to make decisions without reference to the patient’s prior wishes, the proxy’s authority relies on the patient’s prior wishes to designate him or her, and although proxies may make use of their own real-time judgments, there is no application of the patients’ (nonexistent) real-time wishes. The question “How can anyone know if the wishes of the patient who is incompetent are represented by the recorded wishes?” can be answered as follows, When there are no reliable real-time wishes, it is prior wishes that must be represented.

Patients who are in a state in which it is not possible to have wishes, such as occurs when there is complete absence of neocortical function, clearly meet the criteria by which advance directives can be activated. A problem arises when a patient is not wishless but is decisionally incapacitated, as can occur in advanced stages of cancer. Many such circumstances involve such a significant change in the patients’ personality or states of being that they are very different from the former selves who made out the directive. There is limited ethical imperative to apply the wishes of the former person to the current person if the latter is a significantly altered or a truncated version of the former (32). Under these circumstances, advance directives may be said to represent a weak version of the surviving interests of the patients, and other factors must therefore be considered. Technical and legal statements as to when advance directives can be activated often fail to make this distinction. Nonetheless, physicians should be particularly careful to meet ethical standards as well as legal ones under these circumstances. The question “How should one represent patients who are decisionally incapacitated who seem to have wishes that differ from the recorded wishes?” can be answered as follows: a combination of guidance by the advance directive and substituted or best interests judgment should determine the physicians’ and the proxies’ decisions for patients in this circumstance.

Whenever patients’ surviving interests are unknown, decisions must be made by using standards of substituted judgment or best interests judgment. The application of prior wishes is not the same thing as using substituted judgment. Even when prior wishes are inferred from stated wishes to fit unpredicted decisions, this is a form of prior-preference–guided judgment that is justified by surviving interests.

Substituted judgment usually refers to attempts to judge as the patient would have if he or she could have. In the words of Justice Hughes, who wrote the opinion for Karen Quinlan’s case, “if Karen were herself miraculously lucid for an interval (not altering the existing prognosis of the condition to which she would soon return) and perceptive of her … condition, she [would] decide upon … [the decision of the court offered on her behalf]” (33). Substituted judgment is an intrinsically difficult concept and is just as difficult to implement in reality. Understanding what a person would want is hard enough in ordinary circumstances. Understanding what a person would want when the person is in a state that neither the patient nor the proxy have never been in is even harder. When that state is such that the individual is incapable of having wishes, it is impossible. This last key difficulty centers on the fact that real-time wishes are being created when there are none. Commentators have noted that substituted judgment usually ends up being a version of best interest judgment. It may also end up being a version of prior-preference–guided judgment in that attempts are made to guess what the prior healthy person would have wanted if he or she could have anticipated the eventual condition.

Best interests judgment is somewhat easier conceptually, but is still difficult to implement. The idea is to judge according to the best interests of the patient. It has this advantage: not only is real time used, but also there need be no reliance on notions of the patient’s wishes. The difficulty of this concept is determining what the best interests of the patient are, because this involves highly subjective value assessments. It may also be the case that the patient is so debilitated and “absent” that ordinary real-time interests do not exist. Despite these difficulties, it is the best guiding standard available when prior preferences cannot be used.

Advance care planning has evolved in the contexts of western cultures and is often thought of in terms suited to social contexts in which individual’s rights have some priority. However, the idea of planning is not predicated on individualism and is readily accomplished in cultures that emphasize extended families and community responsibility.

Other cultural differences also invite special consideration, and similarly can usually be accommodated. When the role of deciding for others traditionally falls to a particular role or person in a culture it may seem that advance planning threatens that role. Or if there is distrust of those who seek to plan by those who will be affected, then planning may be omitted or counterproductive unless trustworthiness is established (34). Delegated decision making to family heads has been identified in families of Asian origins; trust concerns have been identified in African American patients and families; and concerns over precipitating undesired outcomes if they are discussed has been identified among Navajo families (35, 36, 37). Perhaps the most problematic cultural issues have to do with cultural inhibitions against discussing dying. This taboo has been as strong in modern western cultures as elsewhere.

Although cultural issues are powerful, generalizations are also problematic. Every case must be engaged on its own issues. The clinician who approaches people with genuine respect and, with an open mind, who inquires about and honors cultural
differences should be able to accomplish advance care planning when it is appropriate in forms that suit each case and setting.

Three practical tips can help with many situations: if extended family decision making may be desired, ask the patient how he or she would like the decision managed and include the relevant people in the process, perhaps suggesting designation of the decision maker in the family as the proxy. If trust may be insufficient, spend longer time establishing trustworthiness by explaining the nature of your thinking as a clinician, by including other members of the family or community and by avoiding arrogation of decision making and instead sharing information fully and carefully. If death is difficult to talk about, be extra sure that you are comfortable with the topic and that you approach it with simplicity and a listening disposition. Ask if there are methods of talking about dying that might be easier and try to accommodate any requests.

Patients’ prior wishes are articulated in real time and must be held to the same standards as any other real-time decisions, namely, to ordinary standards of informed consent. Informed consent has received considerable attention, and its standards can be read about elsewhere (38, 39, 40). Although standards may evolve, for the present physicians should ensure that patients understand the nature of the decision, the alternatives, and the risks (common or serious) and benefits. Patients should be over 18 years of age, have decision-making capacity in the relevant areas, and give evidence of having made actual active decisions. Informed consent specifically for advance directives can be considered in two parts. First, patients must consent to making out an advance directive. Patients must know what the basic procedures are (to discuss the issues and record preferences) and understand that traditional decision making (having physicians and legal next of kin use their best judgment) is the alternative. They must know that there are risks either way (e.g., careless advance directives can lead to unintended actions, but traditional decision making is known to correspond poorly to patients’ wishes). To be competent in the use of instructional directives, patients have to be competent using imagined scenarios. Otherwise, they will not be able to understand the intervention choices they are making for future potential situations. This is not as dissimilar as it may initially seem from real-time decisions, because real-time decisions are also based on how people think they will feel in the future while living with the consequences of the immediate decision.