1. The Nature of Advance Directives.

    The history of advance directives has been a troubled one in the United States. The social reasons for this will be explored in the next section. For now it is important to carefully define what is meant by advance directives and examine their various forms.

    The purpose of advance directives is to allow patients to have some influence on the healthcare choices which are made for them after they have lost decisional capacity. Advance directives are intended to extend the autonomy of patients beyond the point of the loss of decisional capacity.⁽¹⁾ They allow patients to set their own healthcare agenda in the process of dying so that decisions can reflect the patient's own beliefs, values, and goals rather than those of others. Advance directives, then, primarily are an expression of the wishes of patients, regardless of the forms which they take. The correlation between the patient's wishes and the forms in which those wishes are expressed can create some problems which we will examine later in this chapter. But the important point to remember is that the expression of the wishes of the patient is the single most important focus of advance directives.

    Advance directives are intended to be instruments of communication.⁽²⁾ That is, they are not merely private expressions of patients' wishes which are made public only when the advance directives are to be invoked. They are optimally used as methods of communication between patients and their families and patients and their physicians.⁽³⁾ If they are not seen as opportunities for communication their effectiveness may be considerably reduced. We shall return to this important function of advance directives after surveying the forms which they may take.

    There are three basic forms for advance directives: (1) oral directions for the course of care, (2) living wills, and (3) durable powers of attorney for healthcare, or, more generally, healthcare proxies.⁽⁴⁾ We shall explore each of these in turn.

    Oral directions, given by individuals to others who might be involved in decisions about their healthcare, are probably the most common form of advance directives.⁽⁵⁾ These are often communicated in conversations which arise spontaneously and are often triggered by some news event or experience of a friend or relative in the healthcare setting. For example, a visit to a friend or relative in a hospital or extended care facility might prompt a comment such as "I don't ever what to be in a situation like Charlie" or "Don't ever let that happen to me." Such informal comments are often just as accurate in expressing an individual's wishes as any written advance directive which might be framed. Oral expressions can indicate the individual's wishes about the parameters of healthcare which she would find tolerable or intolerable. These expressions are not to be discounted in the clinical setting.⁽⁶⁾ They often are followed in the form of family members telling physicians that "Charlie would not want this kind of intervention," meaning that if Charlie could speak he would definitely refuse this kind of treatment. Physicians then write the appropriate orders.

    Oral expressions of a patient's wishes may be effective advance directives up to a point. Since they may be assumed to express the patient's wishes, they are to be considered seriously. Even though they may not possess all the reflective background that one might expect from a formal exercise with written documentation, they may still express legitimate consents to or refusals of treatment.⁽⁷⁾ It must be remembered that patients can refuse treatments for any reason.⁽⁸⁾ They do not have to have "good" reasons.⁽⁹⁾ Nor do their refusals have to result from extensive reflection. If this is true of patients with decisional capacity, and if advance directives are intended to extend patient autonomy beyond the loss of decisional capacity, then a strong argument can be made that oral advance refusals should carry serious weight in determining the direction of healthcare for patients who have lost decisional capacity. The loss of decisional capacity does not eliminate the interest which patients have in their welfare and the moral harms which they might have to suffer if their wishes are not followed.⁽¹⁰⁾

    If everyone, i.e., family members or surrogates, who has a legitimate interest in the healthcare decisions for the patient with an oral advance directive, agree that the report of the wishes of the patient expressed orally are accurate, and if the physician trusts the individuals who report the wishes, then there is no good moral reason for the oral advance directive not to be honored.⁽¹¹⁾ The major problem with informal oral advance directives occurs when there is a disagreement among those who have an interest in the decisions being made for the patient about what the patient actually said, or would have wanted, or if the physician has a particular problem with the decision being suggested.⁽¹²⁾ Without an independent written statement which provides documentation of the patient's wishes, there is no way to solve disputes satisfactorily about what the patient truly wanted. In the case of disputes, other mechanisms must be utilized for making decisions which may or may not yield a decision which is synonymous with that which the patient has been reported to have wanted.⁽¹³⁾ Patients who limit themselves to oral advance directives are taking a great risk about whether their wishes will be honored. We have already seen how Nancy Cruzan's case became such a problem precisely because she only had an oral advance directive. Her oral advance directive did not count as clear an convincing evidence in Missouri which required such a standard for removing life-sustaining treatments from an incompetent. Had she executed a written advance directive her case would never have gone beyond the initial court hearing and, very likely, would not have had to go to a hearing at all.

    Another form of oral advance directives would be an expression of one's wishes to one's physician. This conversation will frequently be considered more formal than the casual exchange which might occur between one's relatives or friends especially if the physician documents the conversation in the patient's chart. Because of the covenant relationship between the physician and the patient, oral exchanges between them are considered to carry more weight than oral exchanges between others.⁽¹⁴⁾ Such expressions of wishes are considered to be more reflective than others because of the nature of the conversations between the parties involved and the pledges of fidelity and trust which are exchanged. The documentation in the chart functions as a written expression of the patient's wishes and can generally function in the same way as other legislated forms of advance directives.

    Frequently patients will pursue conversations with their physicians rather than with family members because they do not want to trouble their family members with conversations which are often considered to be unpleasant. Another reason for taking this approach might be that patients might find signing or drafting written advance directives to be intimidating to the point that they refuse to do so but are quite willing to talk over the matters with their physicians.⁽¹⁵⁾ The important thing is that patients express their wishes. If the most they can tolerate is a documented conversation with their physicians, then this approach is far better than nothing, if nothing is the only alternative.

    The second form of advance directives is the written living will. It is called a "living" will because, unlike an "estate" will which goes into effect to distribute the estate after an individual has died, the "living" will goes into effect while the individual is still alive. Both documents are signed or drafted while an individual possesses decisional capacity. Ordinarily the living will takes the form of refusing medical treatments which the author does not consider to be beneficial under certain circumstances.⁽¹⁶⁾ However, living wills may also take the form of giving directions for certain approaches to care to be continued or instituted after decisional capacity has been lost.⁽¹⁷⁾ In certain rare instances, the living will may stipulate that all possible care be continued up to the moment of the patient's death.⁽¹⁸⁾

    Early in the development of living will documents two qualifications were generally considered to be prerequisites for the implementation of a living will. The patient had to be terminally ill and the patient must have irreversibly lost decisional capacity.⁽¹⁹⁾ Once these two conditions were present, the directions in the living will were supposed to be honored. Many states include permanent loss of consciousness, i.e., persistent vegetative state, on a par with terminal conditions even though there is strong professional opinion that PVS is not, strictly speaking, terminal.⁽²⁰⁾ As living will legislation has progressed, the stipulation that patients be "terminally ill" for the directive to be honored has sometimes been eliminated although it is still a common feature.⁽²¹⁾ When this occurs, "no hope of recovery" seems to be sufficient to implement a living will.

    The stipulation requiring an irreversible loss of decisional capacity is included so that patients who have only temporarily lost decisional capacity can once again directly participate in decisions about their healthcare after they have recovered decisional capacity. The moral issue here is the need to allow the patient to become functionally autonomous once again. However, it is conceivable that a patient may foresee that the chances of regaining decisional capacity are so remote and the harms to be endured while waiting for that possibility to materialize so great that the language of "irreversibility" might very well be changed to the language of "probability." Thus, they may want their living will to go into effect even though there might be a slight chance that they could recover decisional capacity.⁽²²⁾

    The terminal illness prerequisite has often been often been considered to be a central part of living will documents because of the deteriorating condition of the patient and the possibility that continued interventions might do no more than prolong the dying process. However, we saw, in chapter 3, that there can be considerable disagreement or latitude in the definition of a terminal illness. This problem generally revolves around whether the definition is formulated in terms of temporality, i.e., how soon the patient will die, or whether the definition is formulated around functional considerations, i.e., the nature of the deterioration being experienced by the individual.⁽²³⁾ State laws generally indicate some preference for considerations of temporality, however vaguely they might be worded.⁽²⁴⁾ However, there may be compelling moral reasons, based on respect for the patient's dignity, to prefer the functional interpretation over the temporal one. Thus, conditions which some consider to be chronic, such as advanced Alzheimer's disease or persistent vegetative state, may be defined by the patient as terminal "enough" to warrant the enforcement of an advance directive.⁽²⁵⁾ We shall see more of this later when we discuss the exercise of writing a living will.

    A living will can state a patient's wishes either in broad strokes or in specific detail. It lets those who have some involvement in the patient's care know the limitations which the patient desires for her care. It is intended by the authors of such documents that the expressed wishes impose an obligation on family members and caregivers alike to follow the wishes contained in the document.⁽²⁶⁾ Its moral force is powerful even though its legal force may be somewhat weaker given some state laws formulated about these documents.⁽²⁷⁾

    The second written form of advance directives is the durable power of attorney for healthcare (or some variation known as a healthcare proxy).⁽²⁸⁾ The durable power of attorney is an appointment by the author of the document (known as the "principal") designating someone whom she trusts (known as the "attorney-in-fact") to act in a decision-making capacity for the principal when healthcare decisions are to be made and the principal is unable to make those decisions. This document, or another attached to it, may carry specific instructions to the attorney-in-fact outlining the parameters of the decisions, or specific decisions, which the principal wishes to be followed in making healthcare decisions for the principal.

    Unlike a regular power of attorney which ceases when the principal loses decisional capacity, the durable power of attorney continues after the loss of decisional capacity; hence the term "durable." A durable power of attorney may cover a variety of functions but does not necessarily include healthcare decisions. The durable power of attorney for healthcare is specific for healthcare decisions and goes into effect only when the principal has lost decisional capacity.⁽²⁹⁾ Other durable powers of attorney, e.g., those for financial transactions, may function both before and after the loss of decisional capacity.

    The texture of the authority of the attorney-in-fact in a durable power of attorney for healthcare is designated by the laws of the individual states.⁽³⁰⁾ In addition to variation from state to state, these laws, like living will legislation, are frequently revised and refined.⁽³¹⁾ In general, the attorney-in-fact can make healthcare decisions for the principal whether the principal has irreversibly lost decisional capacity or not. In some states, if the loss of decisional capacity is temporary, the attorney-in-fact may not refuse life-saving treatments or life-sustaining treatments.⁽³²⁾ In these states the attorney-in-fact can refuse life-sustaining treatments on behalf of the principal only if the loss of decisional capacity is permanent.

    While some states, e.g., Ohio,⁽³³⁾ require that the patient be terminally ill, or in a permanently unconscious state (PVS), for the attorney-in-fact to be permitted to withhold or withdraw life-sustaining treatments, other states give the attorney-in-fact comprehensive authority to make all healthcare decisions for patients lacking decisional capacity.⁽³⁴⁾ The same moral concerns revolve around defining the notion of "terminal" illness and the "irreversible" loss of decisional capacity in a durable power of attorney for healthcare as outlined earlier in the discussion of living wills.

    The appointment of an attorney-in-fact is no small matter for an individual. The gravity of the decision may be indicated by the notion that the attorney-in-fact is someone whom the principal trusts. This appointment involves a very deep trust because the attorney-in-fact is literally empowered to make life and death decisions for the principal.⁽³⁵⁾ Special reflective care needs to be taken to be sure that the principal knows whom she can trust to make such decisions. This appointment can be a member of the family or a friend outside the family. If it is a member of the family the authority of the attorney-in-fact has precedence over all other family members in making healthcare decisions for the principal. If it is a not member of the family the authority of the attorney-in-fact has precedence even over family members in making healthcare decisions for the principal.

    When an attorney-in-fact is designated, the fiduciary relationship which the physician previously had with the patient is enlarged to include the attorney-in-fact. Thus, all the principles and procedures which govern the dynamics of informed consent must be directed to the attorney-in-fact. The mutual trust which animates the physician-patient relationship must incorporate the physician-attorney-in-fact relationship on behalf of the patient. The physician has no more right to second guess the decisions of the attorney-in-fact than she does to second guess the decisions of the patient. For the attorney-in-fact has been designated as a trustworthy spokesperson for the patient/principal. The authority of the attorney-in-fact is, indeed, awesome and no less than that of the patient who has decisional capacity.

    When the attorney-in-fact makes decisions on behalf of the patient the principle of substituted judgment is the preferred principle to be followed.⁽³⁶⁾ The principle of substituted judgment holds that the individual making the decision should substitute for her own judgment, the judgment which the person, for whom she is making the judgment, would make if she could do so. In other words, the attorney-in-fact should make the decision which the principal/patient would have made if the principal were capable of making the decision herself.⁽³⁷⁾ This means that the decision of the attorney-in-fact may not be the one she would have made if she had been able to follow her own preferences. The attorney-in-fact, then, makes the healthcare decision through the "value eyes" of the principal/patient rather than through her own "value eyes." She is doing what the patient "would have wanted."

    It is not always easy to determine what the principal's decision would have been. Three ways of identifying the bases for substituted judgment can be considered. (1) The principal may have left specific instructions with the attorney-in-fact, and the latter simply carries out the instructions because they clearly represent what the principal would have wanted; for example, an accompanying living will document or a similar set of specific instructions. (2) The principal may have left some incomplete verbal clues from which the attorney-in-fact can draw inferences about what the principal would have wanted in a set of circumstances which the principal may not have envisioned; for example, "I don't think I would like to live like . . ." (3) The principal may have engaged in certain behaviors in analogous circumstances or made lifestyle choices from which inferences may be drawn about what she might like to have happen in the current situation; for example, a very physically and intellectually active person who may suddenly be confined to a persistent vegetative state.⁽³⁸⁾

    The best approach might be for the principal to leave specific instructions for the attorney-in-fact. However, this is no guarantee that the patient's wishes will be followed.⁽³⁹⁾ Providing specific instructions is not always possible in healthcare decisions but some guidelines may be possible and, indeed, quite helpful.⁽⁴⁰⁾ Minimally, the patient should include a statement of trust in the ability of the attorney-in-fact to make a good decision for the patient, given the realities of the clinical situation, which, admittedly, the patient cannot foresee in exquisite detail. To do less is to place the attorney-in-fact in a difficult decision-making position. Incorrect inferences may be drawn and erroneous decisions could follow. But the whole point of trusting an individual whom one appoints as an attorney-in-fact is the belief that she will make the best judgment of which she is capable, knowing full well that she may be the victim of human error; but also trusting that the attorney-in-fact will never act out of self-interest.

    Many times individuals simply cannot bring themselves to anticipate healthcare crises for themselves and leave few clues as a foundation for substituted judgments. But they may still wish to appoint an attorney-in-fact. An attorney-in-fact who is appointed under these circumstances and who cannot really make a decision based upon the principle of substituted judgment can only resort to the principle of best interest.⁽⁴¹⁾ This principle requires a decision-maker to make the decision that a reasonable person would make given all the facts which are known and which seems to promote what is best for the patient. For example, if a form of care is not going to provide a decent benefit for a patient, then that intervention can be refused. In this way the best interest of the patient is preserved even though the patient has not herself identified what she considers to be in her best interest.

    Here again the matter of trust enters the decisional arena. Even though a principal may have no tolerance for making or anticipating difficult healthcare decisions, she may trust another to make those decisions for her when the time comes. Thus, the attorney-in-fact is appointed with the understanding that she will act in the best interest of the principal when the time comes to make end-of-life decisions. This should not stop the attorney-in-fact from periodically reviewing the appointment and attempting to solicit some instructions from the principal.⁽⁴²⁾

    When weighing the approach individuals might wish to take to advance directives there is probably no one right way to make their wishes known. The best way is the strategy which makes patients feel most comfortable. Each way has its own assets and liabilities as will be examined below in section 3. We have already seen that the written documents have the advantage over oral advance directives of providing a means to settle disputes. Living wills allow patients to speak for themselves while durable powers of attorney place someone in a decisional position who can assess the particular circumstances first-hand. Many individuals who opt for written forms choose both a living will and a durable power of attorney for healthcare. In this case the living will may function as a set of instructions for the attorney-in-fact. If there is a substantive conflict between what is stated in the living will and a decision made by the attorney-in-fact, then the living will, in most cases, is the document to be honored (based on the principle of autonomy) because it is the patient speaking directly for herself.⁽⁴³⁾

    Regardless of the approach used advance directives allow patients to retain some measure of control in the decisions which are made in their healthcare. They no longer are consigned to the role of victims of someone else's value agenda. They can still exercise their autonomy and, in that way, advance directives can play a major role in preserving the personal dignity of patients.

2. General Problems with Advance Directives.

    From the earliest days of the passage and implementation of the Patient Self-Determination Act concerns have been raised about its usefulness.⁽⁴⁴⁾ These reservations cover a broad spectrum. A brief survey of these problems might be helpful before launching into a detailed examination of advance directives. The analysis in the following four sections may give some clues to the composition of advance directives and strategies for developing and implementing them. Perhaps, these suggestions will also reduce some of the misgivings about the effectiveness of advance directives and the Patient Self-Determination Act.

    (1) There have been suspicions that patients do not want to talk about end-of-life decisions and there has been evidence that even when they express a desire to speak with their physicians about these matters they do not have the actual conversations or do not actually sign a living will.⁽⁴⁵⁾ Concerns were expressed that conversations about advance directives are too time-consuming and require too much training. Forms came under attack. General forms were considered to be too vague and specific forms with specific directions about interventions were considered to be the gateway to inappropriate care.⁽⁴⁶⁾ Concerns were also raised about whether proxies can make appropriate decisions for patients when they are appointed in a Durable Power of Attorney for Healthcare.⁽⁴⁷⁾

    Few, if any, of these early concerns have been resolved. Evidence has been suggested which supports both sides of the controversies. Thus, the indications are that more evidence needs to be gathered on virtually every issue related to the Patient Self-Determination Act.⁽⁴⁸⁾ But in spite of its problems the Patient Self-Determination Act does seem to work in some cases,⁽⁴⁹⁾ in spite of some early evidence to the contrary.⁽⁵⁰⁾ Some recent research indicates that, even with specific instructions given in advance directives, care is inconsistent at best in half the cases studied.⁽⁵¹⁾ Additionally, one study has found that advance directives neither enhance physician-patient communication nor decision-making about resuscitation.⁽⁵²⁾ Much work still needs to be done, not just in answering the question of whether it is working or not, but also in developing which strategies will make the law truly effective.⁽⁵³⁾

    (2) Perhaps the central problem has to do with the difficulty of talking about specifics with physicians. One study has shown that advance directives have not actually enhanced communication between patients and physicians.⁽⁵⁴⁾ There seems to be a significant reluctance on the part of physicians to talk about advance directives.⁽⁵⁵⁾ Reasons may range from lack of time for discussions to discomfort with talking about dying to difficulty in predicting what patients' medical needs will be in end-of-life situations.⁽⁵⁶⁾ On the other hand, some physicians actively solicit patients advance preferences and spend considerable time discussing them.⁽⁵⁷⁾

    (3) Questions have been raised about whether patients will change their minds subsequent to signing an advance directive or whether their choices in advance directives will remain stable. In spite of concerns in this area there does seem to be some evidence that once one has decided to forego treatment in an advance directive, she remains consistent in that decision.⁽⁵⁸⁾ Thus, one may approach advance directives with some confidence in their reliability.

    (4) There will always be borderline cases regarding the implementation of advance directives and these cases present particularly difficult problems in surgery.⁽⁵⁹⁾ How one is to interpret patients' wishes expressed in an advance directive when unanticipated conditions arise have been, and will probably always remain troublesome, particularly if physicians do not have somewhat detailed conversations with their patients.⁽⁶⁰⁾

    (5) The patient's understanding of the purpose of advance directives can be a matter of some concern. But of greater concern is the methods to be used by patients in formulating them. Some very detailed methods have been suggested and they have considerable merit for those patients who have a tolerance for exquisite detail.⁽⁶¹⁾ The question still remains, however, as to the appropriate approach for those who are not enamored of such specificity. A further question remains about the correct way to interpret advance directives if they are only couched in general terms.

    (6) The lack of general use of advance directives is troublesome. If only 15% of the population signs or drafts advance directives, is their limited use worth the effort?⁽⁶²⁾ Granted that with time and further familiarity there may be an increase in the use of advance directives, the question still remains as to whether the increase will justify the effort needed to promote them. On the other hand, the significance of numbers may not be the major issue of concern in this regard. The major concern may be whether advance directives can improve the quality of care of the patients who have them.⁽⁶³⁾

    (7) Educational programs are essential for the implementation of the Patient Self-Determination Act. The question which needs to be addressed is what sort of programs are needed and whether educational programs can really help increase patients' comprehension of advance directives, their moral usefulness, and the legal requirements which govern them?⁽⁶⁴⁾ The failure of some programs may only mean that there are still challenges that can be met if creative educators turn their attention to them.⁽⁶⁵⁾

    (8) Some empirical results indicate that there is a great willingness to discuss end-of-life decisions and advance directives.⁽⁶⁶⁾ This interest is present on both the side of patient and on the side of physicians. Such results would seem to generate hope that conversations about advance directives can be effective. However, less optimistic are the results of the SUPPORT study which indicates that, in spite of extensive efforts at communication, these efforts may not substantially change physician practices and the way patients are treated in end-of-life situations.⁽⁶⁷⁾ Perhaps, as the SUPPORT study suggests, greater and more creative efforts must be made at communication.

    (9) Even if advance directives are developed, there is still a concern about whether they will be accessible when they are needed.⁽⁶⁸⁾ If advance directives are not produced when they need to be implemented, or if they are not followed by their caregivers, the effort to generate them may have no value. The transmission of the advance directive remains a matter of serious concern.

    (10) Finally, a matter of on-going debate is whether the use of advance directives are economically advantageous in managing the resources of healthcare. Some studies indicate that advance directives have a positive influence on resource management,⁽⁶⁹⁾ while other studies argue than any result is negligible.⁽⁷⁰⁾ Further studies will be needed in this area together with closer observance of the stipulations of the advance directives themselves. A related matter is whether advance directives really function as a promotion of patient autonomy or are actually used to limit care, primarily for the purpose of reducing healthcare costs.⁽⁷¹⁾

    The problems raised by the use of advance directives, and their role in the Patient Self-Determination Act cannot be minimized. However, they must also be seen in perspective. Advance directives have only recently appeared upon the healthcare scene and have only more recently been taken seriously by caregivers and healthcare institutions. An instrument with such complex implications cannot be expected to be perfect so early in its use. What may be needed at this point is not to allow the problems of advance directives to overwhelm healthcare delivery, but to bend every effort to making them work and fulfill the promise that they hold for improving the quality of patient care at the end of life. If nothing else, the societal discussion of advance directives has sparked some changes in the communication patterns between patients and physicians, a variety of educational programs, and some actual changes in the practice patterns of some physicians. Even if advance directives fail in the long run, these changes can have a salutary effect on the practice of medicine and the enhancement of the welfare of patients.⁽⁷²⁾

3. Advantages and Disadvantages of Advance Directives.

    From the observations in the previous three sections we can begin to see emerging some of the advantages and disadvantages of advance directives. In the first section this matter was directly addressed with oral advance directives. Now is the time to attempt to identify clearly the advantages and disadvantages in written advance directives. This effort should assist caregivers who are talking to patients about advance directives in their facilities. For, as was said earlier, advance directives are not for everyone and a particular form of advance directives is not necessarily preferable for all patients.

    There are many advantages to drafting an advance directive. An advance directive, particularly a detailed living will or special instructions to a physician or an attorney-in-fact, can provide a documented portrait of the author by delineating her wishes and values. The reflective life of the author can be enhanced through the exercise of drafting an advance directive. One cannot compose such a document without seriously reflecting upon the meaning of her life, the values which drive her, the goals she wishes to obtain, and the virtues she wishes to practice. Furthermore, such an exercise places the author within the natural rhythms of life by acknowledging that death is an integral part of the life process.⁽⁷³⁾

    An important ethical advantage is that an advance directive promotes personal autonomy by extending the making of choices beyond the loss of decisional capacity. This extension promotes continuity of care because it insures that beliefs and attitudes toward treatment which the author had prior to the loss of capacity will continue to be honored. The advance directive also acknowledges the dignity of the author by allowing her to accept the moral risks which are a necessary part of her decision-making as a moral agent.

    This last feature, namely, the element of risk-taking, causes some to allege that advance directives are unreliable and the risks attendant to attempting to forecast the clinical future constitutes their major disadvantage. Many would claim that no one can anticipate all contingencies or even enough contingencies about her future healthcare decisions to make meaningful clinical decisions in anticipation of the onset of decisional incapacity.⁽⁷⁴⁾ While all contingencies cannot be anticipated, some, if not many, of them can be.⁽⁷⁵⁾ The ability to anticipate future decisions would require the author to monitor her healthcare circumstances and adjust or reinforce the stipulations of her advance directive in light of unfolding clinical conditions.⁽⁷⁶⁾ This may mean that an advance directive which an individual wrote while she was in a relatively healthy state should be reviewed when a terminal diagnosis is returned or as a chronic disease progresses.

    The anticipation of contingencies raises another important issue. Some individuals are more willing to take risks than others. The taking of moral risks in making decisions was identified in chapter 4, section 3 as an important dimension of human dignity. Risk-taking is a virtue that is sometimes practiced with considerable ease. Even if one is taking greater risks than a healthcare professional might like, respect for her dignity requires that those wishes, along with the risks they assume, be respected.

    When recounting the advantages of advance directives, one cannot fail to notice that there are benefits which come to others as well as the author herself. A well drafted advance directive will relieve others of the need to second-guess the wishes of the author. Feelings of guilt can also be relieved because others, e.g., surrogates, will know that they are making decisions as the author would want them, and are respecting her dignity by honoring her wishes. The fear of lawsuits against caregivers who honor the author's wishes can be muted because state laws which recognize advance directives ordinarily grant immunity from prosecution or civil procedures to those who honor the wishes of patients when they comply with the stipulations of the advance directives and the law.

    Once again resource allocation issues become an element for consideration. Currently, a good deal of our healthcare resources are being allocated to the care of those lacking decisional capacity who have not expressed their wishes about the extent of their care. If individuals are encouraged to express their wishes, some of those healthcare resources in individual cases may be saved or allocated for other important societal purposes.⁽⁷⁷⁾

    The legal freedom of a physician to refuse to honor an advance directive was discussed in the previous section. Suffice it to say that advance directives have the advantage of acting as a compelling moral force on the way caregivers participate in healthcare decisions about their patients. The disadvantage is that advance directives do not bind caregivers absolutely. The dynamics of informed consent enter into this situation, for both patients and caregivers need to know the attitudes of each other so they can negotiate with each other in light of those attitudes while the patient still has decisional capacity.⁽⁷⁸⁾ In this way the advantage/disadvantage facet of advance directives can preserve both the dignity of the patient and the integrity of the caregiver.

    There are some special advantages and disadvantages which can be identified for the two forms of advance directives. Living wills have the advantage of allowing patients to speak for themselves. They are particularly advantageous if patients have taken the time to achieve some degree of specificity about treatments.⁽⁷⁹⁾ The disadvantage of living wills is that patients must anticipate situations which they might face;⁽⁸⁰⁾ they are not actually face to face with the situation. This exercise is always accompanied by some degree of uncertainty. Thus, patients are not able to make decisions based upon their immediate experience of the clinical situation. Nor can they weigh the contingencies which accompany their circumstances.

    The disadvantage of living wills in terms of foreseeing the future is countered by the advantage of the durable power of attorney. For the attorney-in-fact is able to make a decision based upon the immediate experience of the principal's clinical situation and can weigh the variables of the exact situation carefully before making a decision.⁽⁸¹⁾ On the other hand, the attorney-in-fact can only speak for the patient in light of the patient's trust for her. The attorney-in-fact is not the patient and so the nuances of the attorney-in-fact's decision may not be a mirror image of the patient's. The principal can minimize the differences by giving directives to the attorney-in-fact about the course she wishes her healthcare to take and by articulating her trust in the attorney-in-fact. A living will which has some degree of specificity could function as such a directive. Thus, those who wish to be most completely protected may want to complete both a living will and a durable power of attorney for healthcare.

    Taking into account all of the advantages and disadvantages the former seem to outweigh the latter.⁽⁸²⁾ However, apprehension, fear, anxiety, or neglect often stand in the way of individuals' completing advance directives.⁽⁸³⁾ In such cases, and they are the vast majority, periodic reminders about considering advance directives may need to be given to patients as their life experiences and healthcare circumstances change. While they might not be ready at one time to think seriously about advance directives, they might be ready at another time. For this reason on-going educational programs conducted by healthcare institutions, such as those discussed in chapter 5, section 3, are vital.

4. Writing an Advance Directive.

    One of the major problems which has emerged in the early history of advance directives, and still endures in many cases today, is that many directives are too general in character to give sufficient guidance. Language such as "no use of heroic means" tends to cloud the issues because there is no universal understanding of what constitutes "heroic means." Frequently, there is virtually no advance discussion between patients and physicians about the proper interpretation of this sort of directive.

If an advance directive is to function effectively, it must be credible and contain some measure of specificity.⁽⁸⁴⁾ Both of these features must be present if the author is to have the peace of mind that her wishes will be honored. In Cruzan, for example, the Supreme Court indicated that advance directives which are specific with regard to treatment and condition, meet the clear and convincing evidence criterion which states are permitted to establish in cases of withdrawing life-sustaining treatments from patients lacking decisional capacity.⁽⁸⁵⁾ The Court did not mean that all states should require clear and convincing evidence, preferably taking the form of specificity, but only that states could require it if the state wishes to do so.
    The credibility of the document refers to the intention and motivation of the author.⁽⁸⁶⁾ Documents which contain only a signature on a form may have doubtful credibility.⁽⁸⁷⁾ The reader may have no way of knowing if the individual signing the document really knows the significance of the document or had thought seriously about it. The author may not have accurate information about her healthcare condition or the options available to her. A credible document would have some indication about the intent of the author and the significance which the author attaches to the document. It would also establish a value profile of the author so that the selection or refusal of treatment can be seen as being consistent with the value context which provides a framework for it.⁽⁸⁸⁾ A discussion between the patient and the physician which focuses upon the intention, motivation, and values of the patient could go a long way toward guaranteeing that the advance directive would be honored.

    The specificity of the document refers to the identification of the treatments which the author desires or does not desire.⁽⁸⁹⁾ Specificity in an advance directive could also identify those outcomes which the author would like to achieve, or, at least, be able to tolerate, and those which the author would like to avoid. This level of specificity may be difficult to accomplish in exquisite detail because no one can anticipate the future with accuracy. And it may be beyond the author's level of tolerance or ability to achieve such precision. But some indication about outcomes could communicate an idea of the author's treatment wishes and the conditions where it would be appropriate to implement them.⁽⁹⁰⁾ One cannot expect to produce an ideal document but this should not stop her from producing a good one.

    While credibility and specificity may be the most desirable characteristics of an advance directive, it would seem that many states do not consider them to be important since they mandate a definite form cast in general language, or at least, some precise language.⁽⁹¹⁾ Forms required by state law with a signature line, while not ideal, are a beginning insofar as they can identify the parameters of a patient's wishes. Caregivers in the state are familiar with them and signatures on them may bear increasing weight as the Patient Self-Determination Act is implemented. One should use a mandated form because it gives protection in those states where specific language is required by law. In those states a personally designed advance directive cannot provide the same protection. If there is a recommended form which is in wide circulation, this should also be used because healthcare institutions will not have to study the form to determine its validity. However, if the patient wishes to go beyond the forms, there is nothing to stop her. Patients are always free to write what they wish as an addendum when there is a required form, provided the form is properly signed. The supplemental document can indicate that the patient wishes to add to the standard form and then go on to state the author's explicit reflections and wishes.

    Communication remains one of the most important functions of an advance directive.⁽⁹²⁾ To whom the author's wishes are communicated is as important as the wishes which are expressed. The author's physician and family or friends are the appropriate objects of the communication.⁽⁹³⁾ Several steps to this communication process can be identified. The first step is to be taken when the author is considering signing or drafting an advance directive. At this time, some discussion with her physician can be very helpful. The physician can explain the significance of the document, present the various approaches to treatment, dispel any misunderstanding the patient might have, and the physician's commitment to honoring the author's wishes. Documents which do not include the physician in the loop of the reflections may meet with questionable acceptance if they are presented only at the time they must be implemented.

    The family members or significant others are the second important objects for communication. Often treatment decisions are delayed or made inappropriately because there is division among family members about the way a patient who lacks decisional capacity should be treated. As the second step in the communication process there could be discussion with family members at the time an advance directive is being considered. Such a discussion can give them the opportunity to listen to the convictions of the author and come to terms with them. Furthermore, it will give them the opportunity to work out any differences in interpretation of the directive which might arise. Allowing the family dynamics to play out before a crisis develops will not solve every problem in implementing an advance directive but such conversations may solve many of them and will surely mitigate some of the need for second-guessing the intentions of the author.

    The final step in the communication process occurs once the appropriate documents are signed. The signed copies should be given to the physician and suitable family members or other surrogates. Giving copies to one's attorney and religious leader might also be appropriate. Keeping the copies only in a desk drawer, safe deposit box, or a lawyer's files will likely make them inaccessible at the very time when they are needed. The Patient Self-Determination Act requires healthcare facilities to document advance directive information in the patient's records. In many states, and for many institutions, this has meant keeping a copy of the advance directive itself on the patient's chart, at least while the patient is currently in the institution or program.⁽⁹⁴⁾ Keeping the advance directive as a part of the permanent record for a patient may create some problems in case a patient changes the advance directive in any way at a later time.

    Once an advance directive is written it should not be considered to be unchangeable. This is particularly the case when certain specifications are given to the document or when an attorney-in-fact has been appointed. New technologies can be introduced to the healthcare setting or, over time, the success rate of current technologies could improve or decline. Life experiences and relationships may change an individual's perception of the direction her advance directive should take. For example the attorney-in-fact may die or may no longer be considered trustworthy for the task the principal has designated.
Of particular concern is the review of a document or one's instructions to the attorney-in-fact periodically after the document has been written or signed. Healthcare professionals might have difficulty implementing an advance directive which might be twenty years old or more. Reviewing one's advance directive every three to five years would be helpful to communicate that beliefs about end-of-life decisions prompting the advance directive are relatively current.⁽⁹⁵⁾ If all remains the same the author of the advance directive can sign the document again and enter the new date. This procedure lets others know that the authors have reflected again on their decisions and that their directive truly represents their current state of mind. If their healthcare condition radically changes, the advance directive should be reconsidered and updated. In light of a specific healthcare future rather than a vague future, the author may wish to incorporate alterations into the document. As patients go through the process of a terminal illness they may also have new insights into their goals and the values which they consider important to pursue. This experience may be a reason for additional changes. Approaching an advance directive as a "work in progress" underscores the narrative character of the author's dignity and helps to preserve that dignity by keeping thinking current in her life.

    Whenever these changes are made they should be communicated to those who have a direct interest in the decisions and care of the author. This way changes will not be countered with the presentation of older documents which might represent different views. Older documents may be destroyed or kept to show the continuity in the author's thinking if that should ever be a problem in making healthcare decisions.

    Advance directives are tools to promote patient dignity. But this outcome does not occur automatically. Patients must assume a large measure of responsibility in developing strategies which will help them achieve this end. There are limits to what healthcare facilities can do to assist patients in writing their advance directives. Ultimately the responsibility for the clarity of the documents and appropriate communication about the documents must be borne by the patient. If patients want their personal dignity preserved, they must become active in the process. The Patient Self-Determination Act provides the opportunity. The patient must do a good deal of the work.

5. Content of Advance Directives.

    When an individual is thinking about writing an advance directive either as a primary document or as a document which is supplemental to a standard form required or recommended by state law, there are some elements which would be helpful to include. Recall that the two most important features of the document are its credibility and its specificity. In addressing these issues, authors may wish to be very detailed or they may have a tolerance for only limited details. There is no single way the issues in the documents should be stated.⁽⁹⁶⁾ The amount of detail to be contained in any particular document will depend on the disposition of the author and the kind of assistance she receives in writing the document.

    Nonetheless, elements which make a document credible could include an explicit statement about the reasons for writing the document. These will certainly vary from person to person but they convey vital information to those who would read the document and have to implement it. Possible reasons would include giving guidance to caregivers and family, preserving the author's dignity, elimination of guessing about the author's wishes by secondary decision-makers, avoidance of unwanted treatments, the avoidance of prolonged dying, the extension of life, or saving costs to the estate. All of these are valid reasons for having an advance directive. And there may be many more reasons. The reasons demonstrate that the author has reflected upon what is important to her; the advance directive is not based on a whim, is not just an automatic response to some social force, nor is it the result of coercion.

    Another essential way to communicate credibility is to identify clearly those values and value priorities which have guided one's life and the goals which one seeks to achieve with the decisions being made. This approach explicitly identifies what is most important to the author. The value narrative, which was discussed in chapter 4, section 2, provides a context for the treatment decisions which one will make in the document. Included in this section would be a statement about the minimum quality of life which the author would be willing to live. Thus, any condition which irreversibly falls below that minimal level would activate the implementation of the advance directive.⁽⁹⁷⁾

    The final considerations which would establish credibility would be for the author to make some statement about her views regarding the way death fits into her life process and her acceptance of death.⁽⁹⁸⁾ This topic is often avoided by patients and physicians alike.⁽⁹⁹⁾ However, inclusion of this issue in an advance directive indicates that the document is one which must be taken seriously by those who are called upon to execute it. Also one might include some statement about the way she sees her role in anticipating contingencies when making these sorts of healthcare decisions. This is particularly important since authors must realize that they cannot anticipate every clinical contingency. Those who implement the document would be helped to know that the author has accepted this fact but wants her wishes to be followed in spite of uncertainties. Comments about the way she views the virtue of risk-taking,⁽¹⁰⁰⁾ a very significant facet of human dignity, would also be most helpful.

    With regard to specificity, the appropriate level will be a matter of the author's choice. We have seen earlier that vague or general language is seldom useful unless there is some documented conversation which interprets the language used. One of the reasons for pressing the point of specificity is that the more comprehensive the detail, the easier it will be to extrapolate and fill gaps which may not have been anticipated. For example, if a patient specifies that she does not want naso-gastric tube feedings or a gastrostomy but has neglected to include hyperalimentation, the conclusion can be drawn that she would refuse the hyperalimentation as well. Another advantage is that some specificity will put one in a position to meet any clear and convincing evidence standard the state may have or may institute in the future.

    Frequently, advance directives are implemented when two conditions are present, namely, a terminal illness, many times defined in terms of the imminence of death and the irreversible loss of decisional capacity. Unfortunately, there is enough disagreement in society about what constitutes a terminal illness and decisional incapacity that it might be helpful if the author addressed this matter. If she considers a terminal illness to be one in which she will die within a relatively brief period of time as some state laws suggest, then she might want to indicate that understanding. On the other hand, if the time element is not a concern, then she should indicate that perception as well and specify the conditions under which the advance directive should take effect. This would allow for a treatment refusal to be honored earlier than might otherwise happen.

    If the author considers decisional incapacity to be the equivalent of total and permanent loss of consciousness, this could be stated.⁽¹⁰¹⁾ If, however, she considers it to be loss of the ability to respond to her environment in any meaningful or purposeful way, it would be helpful for caregivers to know that as well.⁽¹⁰²⁾ If, as was suggested earlier, a patient wants to indicate a refusal of treatment in spite of a low probability of a return to decisional capacity, this provision can also be made.

    Even though a state's laws sometimes place certain restrictions on the implementation of advance directives through particular interpretations of matters such as what constitutes a terminal illness or decisional incapacity, authors of such documents may still wish to give their own interpretations of these issues. If the wishes of patients are to be honored in terms of their values and goals, then this information should carry strong moral weight with those who would implement the advance directive.⁽¹⁰³⁾ Special precautions may be taken to avoid an entanglement with state laws which do not reflect clinical realities. Or family members may wish to appeal to the courts for a ruling on following a patient's wishes even though they may not conform precisely to the state's laws. A court may look favorably on a document which has a good deal of specificity because, after all, honoring the wishes of the patient is paramount and may very well take precedence over a law which has been generated as a compromise among various special interest groups in the state legislature.

    In relation to the notion of specificity, it would be important for the author of an advance directive to indicate what she knows about her healthcare condition. If the author is terminally ill when the advance directive is drafted, this information is vital, for it allows any misunderstandings about the condition to be corrected or clarified. If the author suffers from some chronic disease or conditions which could result in sudden crisis or death, then her understanding here should be discussed and included. Informed consent becomes an important issue here. For, in spite of even good communication with one's physician, there is always the possibility that the patient may miss or misinterpret some information. If the author is normally healthy then general healthcare conditions, family history of disease, or the possibility of injury might be included in the document.

    When it comes to selecting or rejecting the actual treatments themselves all that was said before, in chapter 6, section 5, about refusing treatments must be considered, namely, their relative benefits and risks, the weighing of benefits against burdens, the accomplishment of particular life goals, and the futility of their further pursuit. Every possible intervention cannot be mentioned but the major interventions deserve some attention, for example, transplants, dialysis, antibiotics, respirators, transfusions, etc. The utilization of CPR, the scope of resuscitation efforts, and medically administered nutrition and hydration are interventions which should be explicitly mentioned in an advance directive.⁽¹⁰⁴⁾ The reason for specificity in these areas lies in the fact that the interventions cited are often futile and can best be judged only against realistic medical goals and the personally determined goals of the patient.⁽¹⁰⁵⁾

    Moreover, there is much controversy in society currently about CPR and tube feedings.⁽¹⁰⁶⁾ The controversy about DNR orders are related to both terminal conditions and advanced age. CPR is often considered to be futile in both cases.⁽¹⁰⁷⁾ DNR should be explicitly addressed as a part of the protocol in extended care facilities, particularly because the possibility of eventual loss of decisional capacity looms large. The controversy around medically administered nutrition and hydration focuses on whether they are to be considered medical treatment or simply comfort care.⁽¹⁰⁸⁾ Even though the Cruzan decision considered them medical treatment, the matter has not been settled in many minds. A statement in an advance directive expressing the author's wishes regarding this intervention is one of the few ways in which one can be relatively sure that her wishes will be honored.⁽¹⁰⁹⁾

    In considering the various treatments, patients can decide which they want and under what circumstances they might wish to consent to them or refuse them. For example, a patient might wish to consent to the administration of antibiotics if they will keep the patient more comfortable. But the same patient might choose to refuse antibiotics for a lethal infection and go the route of purely palliative care because the antibiotics are viewed by the patient as prolonging her dying.

    Most advance directives focus on healthcare conditions and treatments. But there is another dimension to specificity which could be considered. Some statement about the outcomes of treatment would be helpful.⁽¹¹⁰⁾ This would relate to what was said earlier about reflections on what would count as a minimally decent quality of life. When considering outcomes the author may identify those outcomes which she would want to avoid, for example, living in a persistent vegetative state or in a permanent condition in which she could not meaningfully receive stimuli from, or respond to, her environment. Or she could identify those outcomes which she would be willing to tolerate within the context of her disease process. This factor would provide great help to caregivers when a full range of treatments cannot be, or is not, specified. If the author has clearly indicated that she would not want to continue to live with a particular outcome, then the caregivers can withhold or withdraw those interventions which might perpetuate that outcome.

    In summary, advance directives are important moral and legal protections and should be carefully considered by all individuals while they are still capable of understanding their options and making healthcare decisions, no matter how tentative they may be. The more explicit the documents can be and the more extensive the communication at the time they are being drafted, the greater the chance of their being honored.⁽¹¹¹⁾ To improve their reliability they should be reviewed periodically as life conditions change so that both patients and caregivers can be confident that the document represents the most recent thinking of its author.

1.  President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Deciding to forego life-sustaining treatment: ethical, medical, and legal issues in treatment decisions. Washington, D.C.: US Government Printing Office, 1983, pages 136-141 and 145-151.
2.  Emanuel LL, Emanuel LJ. The medical directive: A new comprehensive advance care document. JAMA 1989;261:3288-3293.
3.  Markson L et al. The doctor's role in discussing advance preferences for end-of-life care: perceptions of physicians practicing in the VA. JAGS 1997;45:399-406.
4. Annas GJ. The health care proxy and the living will. N Engl J Med 1991;324:1210-1213.
5. American College of Physicians, Ethics manual. 3rd edition. Philadelphia, PA: American College of Physicians, 1992, page 16.
6. Joint Commission for the Accreditation of Health Care Organizations. 1997 comprehensive accreditation manual for hospitals. Oakbrook Terrace, IL: Joint Commission on Accreditation of Health Care Organizations, 1996. Standard RI.1.2.4.
7. Wishes may be expressed in a multitude of valid ways. A particular structure does not make a wish any more or less representative of the accuracy of the wish. Certain structures may fulfill criteria for particular social conventions such as a signed advance directive. But other structures may very well be just as accurate portrayals of what an individual wishes to happen in particular situations.
8. Cf. chapter 6, section 5.
9. Rubenfeld J. The right to privacy. Harvard Law Review 1989;102:737-807.
10. In re Colyer. 99 Wash2d 114, 660P2d 738 (1983).
11. This was the centerpiece of the decision about Bro. Fox who had not written a formal advance directive but let his wishes be known in a formal discussion (more structured than simply a "casual" conversation) about Karen Quinlan and the use of life-sustaining treatments. The court ruled that written documentation was not necessary in such an expression of patient wishes. Oral statements were enough to withdraw life-sustaining treatments. (Cf. In re Eichner (In re Storar) 52NY2d 363, 438 NYS2d 266, 420 NE2d 64, cert denied, 454 US 858 (1981).)
12. Without clear and unambiguous direction about the patient's wishes, the physician often has to fall back on her own judgment about the patient's best interest, utilizing the principle of beneficence. Such judgments often take the form of continued treatment. (Cf. Council on Ethical and Judicial Affairs, AMA. Decisions near the end of life. JAMA 1992;267:2229-2233.)
13. Such mechanisms might include patient care committees, ethics committees, probate hearings, etc.
14. The covenant relationship is one which is richer than simply a relationship of agreement and cooperation. It also involves a deep sense of trust and fidelity based upon roles which seek the intrinsic good of the partners to the covenant. (Cf. Pellegrino Ed, Thomasma DC. The christian virtues in medical practice. Washington, D.C.: Georgetown University Press, 1996, page 80. Cf. also May WF. The physician's covenant: images of the healer in medical ethics. Philadelphia, PA: The Westminster Press, 1983 pages 106-144.)
15. Lynn J. Why I don't have a living will. Law, Medicine & Health Care 1991;19;101-104.
16. Walker RM et al. Living wills and resuscitation preferences in an elderly population. Arch Intern Med 1995;155:171-175.
17. Emanuel L. The health care directive: learning how to draft advance care documents. J Am Geriatr Soc 1991;39:1221-1228.
18. State of Indiana. Healthcare consent law. Indiana Code § 16-8-11 (West Supp. 1988). This is called a "Life-Prolonging Procedures Declaration."
19. Collins ER, Weber D, The Society for the Right to Die. The complete guide to living wills: how to safeguard your treatment choices. New York: Bantam Books, 1991, pages 50-51. Attached to the stipulation "terminal illness" is sometimes found a time qualifier, e.g., "we consider terminally ill patients as those whose condition is irreversible whether treated or not and who most likely will die within 3 to 6 months." American College of Physicians, Ethics manual. 3rd edition. Philadelphia, PA: American College of Physicians, 1992, page 19.
20. American Academy of Neurology. Position of the american academy of neurology on certain aspects of the care and management of the persistent vegetative state patient. Neurology 1988;39:125-126.
21. Choice in Dying. Refusal of treatment legislation. New York: Choice in Dying, 1996, Introduction page 2.
22. Such a stipulation might be made in the case of an Alzheimer's patient. (Cf. King NMP. Making sense of advance directives. Revised Edition. Washington, D.C.: Georgetown University Press, 1996, page 10.) A detailed advance directive would be required, however, such as the one suggested by Linda Emanuel. (Cf. Emanuel L. The health care directive: learning how to draft advance care documents. JAGS 1991;39:1221-1228.) More about this issue will be discussed in section 6 below.
23. American Academy of Neurology. Position of the american academy of neurology on certain aspects of the care and management of the persistent vegetative state patient. Neurology 1988;39:125-126.
24. Thus we find phrases such as "death will occur in a relatively short period of time," "death is imminent," "death will occur in a short period of time" etc.
25. This attitude is endorsed by a good many physicians who believe that no aggressive therapeutic interventions whatsoever, including artificial nutrition and hydration should be used for PVS patients. (Cf. Payne K et al. Physicians' attitudes about the care of patients in the persistent vegetative state: a national survey. Ann Intern Med 1996;125:104-110.)
26. However, physicians do not always have to honor the wishes expressed in an advance directive, (Cf. King NMP. Making sense of advance directives. Revised Edition. Washington, D.C.: Georgetown University Press, 1996, pages 153 and 251. Cf. also Choice in Dying. Refusal of treatment legislation. New York: Choice in Dying, 1996, Introduction pages 2-3.) just as they do not always have to honor every wish of a competent patient. In Indiana, the physician who feels that she cannot honor a patient's advance directive must attempt to help the patient find another physician who can honor the advance directive. (Cf. Indiana Code Ann. § 16-36-1-1 to 16-36-1-14 (Burns 1992).) In Ohio, a physician can refuse to honor a patient's advance directive as a matter of "conscience" but the patient may be transferred to another physician. (Cf. State of Ohio: Senate Bill 1, 1991.)
27. In Cruzan, (Cf. Cruzan v. Director, Missouri Department of Health. 110 S.Ct. 2841 (1990)) the Court held that advance directives can act as clear and convincing evidence of the wishes of an incompetent. It didnot require that the incompetent be in a terminal condition for the advance directive to function in this way. Nor did it require that physicians comply with advance directives. Such matters are left to state laws.
28. Peterson L. Advance directives, proxies, and the practice of surgery. Am J Surg 1992;163:277-281.
29. Collins ER, Weber D, The Society for the Right to Die. The complete guide to living wills: how to safeguard your treatment choices. New York: Bantam Books, 1991, pages 68-69.
30. Ibid., page 117.
31. Choice in Dying. Refusal of treatment legislation. New York: Choice in Dying, 1996, Introduction page 2.
32. Ohio is an example of such a stipulation. (Cf. State of Ohio: Senate Bill 1, 1991.)
33. State of Ohio: Senate Bill 1, 1991.
34. Choice in Dying. Refusal of treatment legislation. New York: Choice in Dying, 1996, Introduction pages 3-4.
35. The trust factor is particularly important if the attorney- in-fact is permitted to make decisions about life-sustaining treatments for patients who have only temporarily lost decisional capacity. An example of this feature might be found in Rhode Island. (Cf. R.I. Gen Laws §§ 23-4.10-1 to 23-4.10-2 [1989].)
36. Jonsen AR et al. Clinical ethics: a practical approach to ethical decisions in clinical medicine. 4th edition. New York: McGraw-Hill, Inc., 1998, page 87.
37. The problem here, as with all advance directives, is that the patient cannot foresee all future circumstances. Thus, the attorney in fact may not be able to duplicate exactly the judgment which the principal might have indicated prior to the onset of decisional incapacity. For this reason the principal might want to be careful not to be unduly restrictive in giving instructions to the attorney-in-fact. The attorney-in-fact may have to massage new information into the "substituted" judgment. This is an added reason for the element of trust in choosing the attorney-in-fact who may have to consider new information while, at the same time, remaining faithful to the spirit of the beliefs, values, and preferences of the principal.
38. Only #1 would, without difficulty, satisfy the clear and convincing evidence standard which was the centerpiece of the holding in Cruzan. (Cf. Cruzan v. Director, Missouri Department of Health. 110 SCt. 2841 (1990).) In rare cases #2 might work if the clues were specific enough and had been communicated to a variety of individuals. Clear and convincing evidence would probably never encompass #3. The focus on clear and convincing evidence (in those states where it is required) gives added weight to the need to clearly express one's wishes before the onset of decisional incapacity. Making others draw too many inferences is fraught with risk.
39. Teno JM et al. Do advance directives provide instructions that direct care? JAGS 1997;45:508-512.
40. King NMP. Making sense of advance directives. Revised Edition. Washington, D.C.: Georgetown University Press, 1996, pages 126-129.
41. Jonsen AR et al. Clinical ethics: a practical approach to ethical decisions in clinical medicine. 4th edition. New York: McGraw-Hill, Inc, 1998, page 87.
42. At the time of drafting or signing advance directive documents, individuals may be reluctant to get too specific because of anxiety or the perceived weight which such documents carry. After a period of time they may become more willing to talk about the import of their advance directives. Family members and attorneys-in-fact should seize this opportunity to gain a clearer perspective on the author's/principal's wishes. This conversation becomes particularly important since surrogates often have difficulty in determining what a patient would want without the patient's guidance. (Cf. Seckler AB et al. Substituted judgments: how accurate are proxy predictions? Ann Intern Med 1991;115:92-98.)
43. Collins ER, Weber D, The Society for the Right to Die. The complete guide to living wills: how to safeguard your treatment choices. New York: Bantam Books, 1991, page 69.
44. Wolf SM et al. Sources of concern about the patient self-determination act. N Engl J Med 1991;325:1666-1671.
45. Gamble ER et al. Knowledge, attitudes, and behavior of elderly persons regarding living wills. Arch Intern Med 1991;151:277-280.
46. Brett AS. Limitations of listing specific medical interventions in advance directives. JAMA 1991;266:825-828.
47. Seckler AB et al. Substituted judgment: how accurate are proxy predictions? Ann Intern Med 1991;115:92-98.
48. One of the strongest challenges to the Patient Self-Determination Act has come from the SUPPORT study. (Cf. Connors AF et al (The SUPPORT Principal Investigators). A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591-1598.)
49. White ML, Fletcher JC. The patient self-determination act: on balance, more help than hinderance. JAMA 1991;266:410-412.
50. Emanuel EJ et al. How well is the patient self-determination act working?: and early assessment. Am J Med 1993;95:619-628.
51. Teno JM et al. Do advance directives provide instructions that direct care? J Am Geriatr Soc 1997;45:508-512.
52. Teno JM. Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention 1995. J Am Geriatr Soc 1997;45:500-507.
53. It is toward the achievement this goal that this text is aimed.
54. Virmani J et al. Relationship of advance directives to physician-patient communication. Arch Intern Med 1994;154:909-913. Cf. also Teno JM. Advance directives for seriously ill hospitalized patients: effectiveness with the patient self-determination act and the SUPPORT intervention 1995. J Am Geriatr Soc 1997;45:500-507.
55. Morrison RS et al. Physician reluctance to discuss advance directives: an empiric investigation of potential barriers. Arch Intern Med 1994;154:2311-2318.
56. McCue JD. The naturalness of dying. JAMA 1995;273:1039-1043.
57. Markson L et al. The doctor's role in discussing advance preferences for end-of-life care: perceptions of physicians practicing in the VA. J Am Geriatr Soc 1997;45:399-406.
58. Danis M et al. Stability of choices about life-sustaining treatments. Ann Intern Med 1994;120:567-573.
59. Peterson LM. Advance directives, proxies, and the practice of surgery. Am J Surg 1992;163:277-281.
60. Durable powers of attorney for healthcare were developed to deal with precisely this problem.
61. Emanuel LL. The health care directive: learning how to draft advance care documents. J Am Geriatr Soc 1991;39:1221-1228.
62. LaPuma J et al. Advance directives on admission: clinical implications and analysis of the patient self-determination act. JAMA 1991;266:402-405. Cf. also Hanson LC, Rodman E. The use of living wills at the end of life. Arch Intern Med 1996;156:1018-1022.
63. Oleson KJ et al. A quality improvement focus for patient rights: advance directives. J Nurs Care Qual 1994;8:52-67. The SUPPORT study raises some genuine issues of concern in this matter. (Cf. Connors AF et al (The SUPPORT Principal Investigators). A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591-1598.)
64. Siegert EA et al. Impact of advance directive videotape on patient comprehension and treatment preferences. Arch Fam Med 1996;5:297-212.
65. DesRosiers M, Navin P. Implementing effective staff education about advance directives. J Nurs Staff Dev 1997;13:126-130.
66. Reilly BM et al. Can we talk? inpatient discussion about advance directives in a community hospital: attending physicians' attitudes, their inpatients' wishes, and reported experience. Arch Intern Med 1994;154:2299-2308.
67. Connors AF et al (The SUPPORT Principal Investigators). A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591-1598.
68. Morrison RS et al. The inaccessibility of advance directives on transfer from ambulatory to acute care settings. JAMA 1995;274;478-503.
69. Chambers CV et al. Relationship of advance directives to hospital charges in a medicare population. Arch Intern Med 1994;154:541-547.
70. Schneiderman LJ et al. Effects of offering advance directives on medical treatments and costs. Ann Intern Med 1992;117:599-606.
71. Levinsky NG. The purpose of advance medical planning --- autonomy for patients or limitation of care? N Engl J Med 1996;335:741-743.
72. Hanson LC. Can Clinical interventions change care at the end of life? Ann Intern Med 1997;126:381-388.
73. McCue JD. The naturalness of dying. JAMA 1995;273:1039-1043. We saw the importance of addressing many of these issues in chapter 4 when we examined the issue of human finitude.
74. Brett AS. Limitations of listing specific medical interventions in advance directives. JAMA 1991;266:825-828.
75. What can never be anticipated is how the patient would feel about an intervention once they experience their malady in the framework of actually implementing an advance directive. It often happens that patients do think differently about an intervention once they experience a disease or injury. Many say they would never undergo chemotherapy; but when the cancer develops they elect it. Many say they could never live as a paraplegic; but after the accident they are grateful for another chance at life, even from a wheelchair. Would an Alzheimer's patient who has elected a DNR order really prefer CPR when the arrest occurs? Or would someone in a PVS really prefer to live life that way? On one level these questions seem to make no sense because such patients have lost contact with the world and, presumably, their inner states. But one cannot help but wonder. Hence the factor of taking risks.
76. In one study, most patients (85%), who initially decided to forego life-sustaining treatments did not change their minds. However, this does not mean that it is not helpful for patients to review their wishes from time to time, especially as their clinical situations change. (Cf. Danis M et al. Stability of choices about life-sustaining treatments. Ann Intern Med 1994;120:567-573.) Besides helping patients, such a review, particularly if documented, would give caregivers greater confidence in following the wishes of patients because they would have a series of articulations of wishes rather than having to rely on just one.
77. Some studies in the relation between advance directives and resource allocation have not indicated, in general, that there is a dramatic savings of resources by the use of advance directives. (Cf. Schneiderman LJ et al. Effects of offering advance directives on medical treatments and costs. Ann Intern Med 1992;117:599-606 where the effect was negligible. Cf. also Teno JM et al. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? J Clin Ethics 1994;5:23-30 where similar reports were reported. Cf. also Emanuel EJ, Emanuel LL. The economics of dying: the illusion of cost savings at the end of life. N Engl J Med 1994;330:540-544 where the savings represent a meager 3.3%.) On the other hand, other studies indicate as much as a 68% reduction in cost in a medicare population using advance directives. (Cf. Chambers CV et al. Relationship of advance directives to hospital charges in a medicare population. Arch Intern Med 1994;154:541-547.) While the studies indicating little to no savings cannot be minimized, it must be noted that in individual cases cost savings could be substantial. (Cf. Previous computations on Nancy Cruzan in chapter 5, note 40.)
78. Molloy DW et al. Treatment preferences, attitudes toward advance directives, and concerns about health care. Humane Med 1991;7:285-290. Cf. also Walker RM et al. Living wills and resuscitation preferences in an elderly population. Arch Intern Med 1995;155:171-175.
79. This will be further examined in section 6 of this chapter.
80. Edinger W, Smucker DR. Outpatients' attitudes regarding advance directives. J Fam Pract 1992;35:650-653.
81. Peterson LM. Advance directives, proxies, and the practice of surgery. Am J Surg 1992;163:277-281.
82. White ML, Fletcher JC. The patient self-determination act: on balance, more help than hindrance. JAMA 1991;266:410-412.
83. Markson LJ et al. Implementing advance directives in the primary care setting. Arch Intern Med 1994;154:2321-2327.
84. Emanuel LL et al. Advance directives for medical care ------ a case for greater use. N Engl J Med 1991;324:889-895. (Cf. also King NMP. Making sense of advance directives. Revised Edition. Washington, D.C.: Georgetown University Press, 1996, pages 126-128.) On the other hand it must be noted that some evidence suggests that specificity in advance directives does not fulfill the promise of enhancing healthcare decision-making in the vast majority of cases. It seems that it is successful in barely 50% of cases. (Cf. Teno JM et al. Do advance directives provide instructions that direct care? JAGS 1977;45:508-512.) Of course, by some standards, 50% success may not be entirely insignificant.
85. Cruzan v. Director, Missouri Department of Health. 110 SCt. 2841 (1990).
86. Peterson LM. Advance directives, proxies, and the practice of surgery. Am J Surg 1992;163:277-281.
87. Ulrich LP. The patient self-determination act: a training program for healthcare professionals. Kettering, OH: Breckenridge Bioethics, 1991, pages 95-97.
88. Value histories are particularly helpful to develop this dimension of an advance directive. (Cf. Monagle JF, Thomasma DC (eds). Medical ethics: policies, protocols, guidelines & programs. Gaithersburg, MD: Aspen Publishers, Inc., 1995, section 8:1.)
89. Emanuel LL. The health care directive: learning to draft advance care documents. J Am Geriatr Soc 1991;39:1221-1228.
90. Pinch WJ, Parsons ME. The ethics of treatment decision making: the elderly patient's perspective. Geriatr Nurs 1993;14:289-293.
91. Cf. State of Ohio: Senate Bill 1. 1991. Cf. also states such as Indiana in Choice in Dying. Refusal of treatment legislation. New York: Choice in Dying, 1996.
92. Virmani J. Relationship of advance directives to physician-patient communication. Arch Intern Med 1994;154:909-913. Although this study demonstrates that little communication actually occurred between patient and physician in the population studied, it, nevertheless, indicates the need for such communication.
93. The SUPPORT study surmises that greater success might have been achieved if the patients had spoken to their physicians directly rather than through nurse intermediaries. (Cf. Connors AF et al (The SUPPORT Principal Investigators). A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 1995;274:1591-1598.)
94. Monagle JF, Thomasma DC (eds). Medical ethics: policies, protocols, guidelines & programs. Gaithersburg, MD: Aspen Publishers, Inc., 1995, section 5.
95. 95. Carney MT, Morrison RS. Advance directives: when, why, and how to start talking. Geriatrics 1997;52:65-73 suggests an annual review and revision. This may be a bit too demanding for the average healthy person. But even more frequent reviews might be appropriate for those suffering from serious or critical illness.
96. Ulrich LP. The patient self-determination act: a training program for healthcare professionals. Kettering, OH: Breckenridge Bioethics, 1991, pages 161-166.
97. Statements about the patient's perception of her quality of life would be particularly important since there is much agreement that what counts as an acceptable quality of life has a very large subjective component. (Cf. Jonsen AR. Clinical ethics: a practical approach to ethical decisions in clinical medicine. 4th edition. New York: McGraw-Hill, Inc., 1998, pages 107-115. Cf. also Gula RM. Quality of life: a focus on the patient's total good. Health Progress 1988;69:34-39.) Determination of one's quality of life can admit of a number of different benchmarks. One could focus upon functional attributes and perceptions of one's well being such as those Spitzer et al. identified: (1) active involvement in an occupation; (2) activities of daily living; (3) perception of one's health; (4) support of family and friends; and (5) outlook on life. (Cf. Spitzer WO et al. Measuring the quality of life of cancer patients: a concise QL-index for use by physicians. J Chron Dis 1981;34:585-597.) In any case an assessment of one's quality of life and the value of its pursuit can best be determined by the individual herself as she evaluates her ability to flourish, i.e., the ability to fulfill her potentials and goals.
98. Rinpoche S. The tibetan book of living and dying. San Francisco, CA: Harper San Francisco: 1992, pages 29-31.
99. Seravalli EP. The dying patient, the physician, and the fear of death. N Engl J Med 1988;319:1728-1730.
100. Cf. above chapter 4, pages 16-17 and 27.
101. This could cover the persistent vegetative state even though some may not consider this a terminal condition. (Cf. The Multi-Societal Task Force on PVS. Medical aspects of the persistent vegetative state. N Engl J Med 1994;330:1499-1508 and 1994;330:1572-1579.)
102. This approach could cover conditions such as Alzheimer's where the patient has lost cognitive contact with the world and which the patient could consider "terminal" even though death may not be imminent.
103. The emphasis in Cruzan (Cf. Cruzan v. Director, Missouri Department of Health. 110 S.Ct. 2841 (1990).) and Vacco v. Quill (Cf. Vacco v. Quill. 117 S.Ct. 2293 (1997).) on the right of patients to refuse treatment "regardless of physical condition" as stated in the latter, may give renewed impetus to the movement to honor advance directives even if there is not a "terminal" condition present. The key issues would then be the loss of decisional capacity and the desire of the patient to avoid a prolonged state where recovery is hopeless.
104. Emanuel LL. The health care directive: learning how to draft advance care documents. J Am Geriatr Soc 1991;39:1221-1228.
105. Wicclair MR. Ethics and the elderly. New York: Oxford University Press, 1993, pages 22-29.
106. Additionally, CPR and artificial nutrition and hydration are the two major issues (along with ventilator support) which have been addressed by the courts from Quinlan (Cf. In re Quinlan. 70 N.J. 10, 355 A.2d 647 (1976).) to the present day.
107. Council on Ethical and Judicial Affairs, AMA. Guidelines for the appropriate use of do-not-resuscitate orders. JAMA 1991;265:1868-1871.
108. Lynn J (ed). By no extraordinary means: the choice to forgo life-sustaining food and water. Bloomington, IN: Indiana University Press, 1986. This entire volume examines this difficult issue.
109. Many states (10) have various stipulations in their advance directive legislation about the ability to forego artificially supplied nutrition and hydration. (Cf. Choice in Dying. Maps. New York: Choice in Dying, 1997.)
110.  Pinch WJ, Parsons ME. The ethics of treatment decision making: the elderly patient's perspective. Geriatr Nurs 1993;14:289-293.
111.  An example of the kind of document which could be generated as a result of the guidelines outlined above can be found in Cantor NL. My annotated living will. Law, Medicine & Health Care 1990;18:115-119.