ADVANCE DIRECTIVES AND ADVANCE CARE PLANNING

Advance directives are oral or written statements in which people declare their treatment preferences in the event that they lose decision-making capacity. Advance directives may allow patients to prevent unwanted and burdensome treatments when struck by terminal illness, permanent unconsciousness, or profound mental disability. Advance directives are only one part of a process known as advance care planning, in which patients, ideally in consultation with physicians and loved ones, plan in a thoughtful and reflective manner for medical care in the event of future incapacity.

This entry discusses the various types of advance directives along with the goals of and the ethical basis for advance care planning. It explores practical problems associated with advance care planning and concludes with discussions of how advance directives are used in clinical practice, and how decision makers ought to proceed in the absence of a clear advance directive.

Goals of Advance Care Planning

Advance care planning refers to any planning by patients for decision making in the event of future decisional incapacity. Although it could refer simply to signing a form in a lawyer's or doctor's office, ideally it creates an opportunity for patients to explore their own values, beliefs, and attitudes regarding quality of life and medical interventions, particularly as they think about the end of their lives. Patients may speak with loved ones, physicians, spiritual advisers, and others during the process. This reflective work can help patients make important decisions about issues that may come up even when they still have the capacity to make decisions. When a patient loses decision-making capacity, physicians and loved ones who have been involved in the advance care planning process may feel that they know the patient's goals and values better. This allows them to make medical decisions that are likely to be consistent with the patient's values and preferences.

Advance care planning accomplishes a variety of goals for patients and families. First, patients may use the process to clarify their own values and to consider how these affect their feelings about care at the end of life. Second, patients can learn more about what they can expect as they face the end of life and about various options for life-sustaining treatment and palliative care. Third, they can gain a sense of control over their medical care and their future, obtaining reassurance that they will die in a manner that is consistent with their preferences. Finally, patients may increase the probability that loved ones and healthcare providers will make decisions in accordance with their values and goals.

Advance care planning may serve other goals, not directly related to medical treatments. Patients may wish to relieve loved ones of the burden of decision making and to protect loved ones from having to watch a drawn-out dying process. Patients also may use the process to prepare themselves for death. Advance care planning may help one reflect more deeply about one's life—its meaning and its goals. Patients may reflect on relationships with loved ones, "un-finished business," and fears about future disability and loss of independence. In this way, advance care planning may improve patients' feelings of life completion and satisfaction with their treatment in their final days.

Many people engage in advance care planning through conversations with their lawyers or loved ones. Peter A. Singer and colleagues reported in 1998 that among the HIV patients that they had studied, many had engaged in serious discussions with loved ones but had not seen any reason to involve their doctors. Nevertheless, physicians, physician extenders, nurses, chaplains, and medical social workers can play an important role in assisting patients in advance care planning.

Healthcare providers have their own reasons for wanting to engage their patients in advance care planning. First, providers may use these discussions to reassure patients that their wishes will be respected. This can enhance a sense of trust. Second, providers may hope that advance directives will help to decrease conflict among family members and between family members and the healthcare team when the patient is seriously ill. Finally, they may hope that advance directives will assist them in making difficult decisions when the patient has lost decision-making capacity.

Advance care planning discussions vary depending on a patient's state of health. Patients who are in good health may benefit from selecting a healthcare proxy and thinking about whether there are any situations so intolerable that they would not want their lives prolonged. When patients are older or have more serious chronic illnesses, physicians may wish to begin a discussion that is broader in scope. Although many view advance care planning as an opportunity for patients to make known their "preferences" for treatment, many patients do not have well-formed treatment preferences. By careful exploration of patients' values, healthcare providers can help patients discover these preferences. Patients can be asked to talk about their goals for life, their fears about disability, their hopes for what the end of their life will look like, and their ideas about states worse than death. This expanded view of advance care planning allows people to think about their mortality and legacy. From such discussions, healthcare providers can help patients consider specifically whether there are certain treatments that they might wish to forgo, and to think about the circumstances under which they might forgo them.

When the patient's illness has progressed to its final stages, healthcare providers can use the groundwork from these earlier discussions to make specific plans about what is to be done when the inevitable worsening occurs. Among other things, the patient and the healthcare providers can decide the following: Should an ambulance be called? Should the patient come to the hospital? Which life-prolonging treatments should be employed and which should be for-gone? Are there particular treatments aimed at symptomatic relief that should be employed?

Types of Advance Directives

Advance care planning may lead to written documentation of the patient's wishes. Although this documentation can take the form of a physician's note documenting a discussion, patients often complete written advance directives. These are particularly important in states with formal requirements about the level of evidence surrogates need to forgo treatments or in situations in which conflicts are likely.

There are two types of advance directives: proxy directives and instructional directives. Both proxy and instructional directives are invoked only if the patient has lost decision-making capacity. Proxy directives, often referred to as durable powers of attorney for healthcare, allow patients to specify a person or persons to make decisions. They are relatively easy for physicians and other healthcare providers to discuss with patients and are straightforward for patients to understand. Proxy directives, however, do not indicate the patient's wishes, preferences, or values, and used alone they do not provide any information to the decision makers about what treatments the patient might have wanted under the circumstances at hand.

Instructional directives attempt to fill this gap. These directives, often referred to as living wills, identify situations in which the patient would or would not want specified treatments. For example, a patient's directive might state that "if I am permanently unconscious or terminally ill, I would not want to undergo cardiopulmonary resuscitation." Documents vary in terms of the scenarios described and the specificity of the different treatments. Some documents use general terms such as "heroic measures" or "aggressive care," whereas others list the specific interventions in detail.

Instructional directives apply only under the circumstances specified in the document. If a patient has a directive relating to treatment in the event of permanent unconsciousness, the directive will not help in decision making if that patient has suffered a devastating stroke. Although advance directives often focus on situations in which the patient would want to forgo treatment, they sometimes state circumstances under which a patient would want aggressive treatment. Finally, on some forms, people have the opportunity to provide more comprehensive information about their values and goals in relation both to their lives generally and to medical care specifically.

Philosophical Issues

The ethical argument that advance directives should be honored is based on the principle of patient autonomy and is a logical extension of the doctrine of informed consent. Patients with decision-making capacity have the right to refuse treatment, even if the treatment would extend their lives. Advance directives are a means for patients to continue to exercise this right, even if they lose decision-making capacity, by making thoughtful and informed decisions in advance. This approach allows patients to direct that medical care be given in a way that they feel best reflects their values and goals. Because physicians generally feel that they have an ethical obligation to work to preserve life, advance directives most commonly give patients a way to tell physicians caring for them the circumstances under which they would not want to be kept alive. On the other hand, some patients might use advance directives to indicate that they would want life-sustaining treatment, even under conditions in which most patients would choose to decline these measures.

Advance directives also serve ethical principles other than autonomy, such as beneficence. Physicians often feel duty-bound to preserve life under almost all circumstances, regardless of quality, even if they are uncertain that this serves the patient's best interests. Encouraging a patient to engage in advance care planning is a means for a physician to safeguard the patient's best interests.

A number of objections to the use of advance directives have been proposed in the literature. In a 1991 article, Alan S. Brett argued that an advance directive form cannot possibly direct the care that is to be given in a real clinical situation. If a patient writes a very general form, stating, for example, that "if I have no reasonable chance of recovery, I direct that no life-sustaining treatment be used," decision makers will have to determine how much of a chance of recovery is "reasonable," how much of a recovery would be worth trying for, and what precisely are "life-sustaining" interventions. Even if one specifies a list of treatments to be forgone in a number of detailed scenarios, this, too, creates problems. First of all, no matter how specific the document, it is unlikely to capture the circumstances of a real clinical situation exactly. Also, patients might not truly understand the specific treatments that they are listing in the document, running the risk of erroneously requesting or forgoing a treatment.

This objection is sound as far as it applies to advance directive documents, and it illustrates the need for a rich advance care planning process. Documents are inherently limited for the reasons Brett suggested. While they provide some insight into the patient's wishes, they nearly always require interpretation. If, however, the patient had engaged in discussions with doctors and proxies about his values, beliefs, and wishes, then decision makers will be in a better position to interpret a document and to make medical decisions with the patient's values in mind.

A related objection is the concern that patients can never know what they would want under conditions that they have not experienced or that they may change their minds. There is certainly reason to be cautious in this matter. Nevertheless, advance directives apply when patients have lost decision-making capacity, often for what is anticipated to be an indefinite period of time. Because these patients can no longer express their preferences, the choice is either to listen to their previous wishes about the situation or to apply some standard external to the patient (the provider's opinion or some societal consensus). Given these alternatives, it would seem most respectful to patients to rely on their previously stated wishes to make treatment decisions, unless there is good reason to believe that the patient did not understand what was written in the directive. Patients also should be told that they may change their advance directive at any time.

In a 1989 article, Rebecca Dresser and John A. Robertson raised another objection regarding whether advance directives should determine the medical care of a patient who has become demented. They believe that when one becomes severely demented, that individual may, in a sense, become a new person, no longer having the thoughts, memories, attitudes, values, and beliefs of one's "former self," who wrote the advance directive.

Now, imagine a moderately demented patient who has pneumonia. Until she developed pneumonia, she had appeared content and comfortable, chatting socially with the staff even though she is unable to recognize anyone, has severe memory loss, and needs assistance with daily activities. This woman has an advance directive stating that if she ever became moderately demented, she would not want lifesaving antibiotics for pneumonia. When she wrote the directive, she said that she would find such a life intolerable. Dresser and Robertson contended that the advance directive would have no moral authority over the new person, who now has pneumonia. Instead of relying on the values and beliefs of a person who no longer exists, a decision should be made based on what is in the best interests of the demented person in her current state. If she appears content and able to enjoy life, Dresser and Robertson argued, she ought to be treated with the antibiotics.

There is significant controversy over what to do in this instance. Accepting Dresser and Robertson's argument would mean frustrating the desires of many people who would not want the final chapter of their lives to involve being kept alive in a demented state. After all, the demented individual is not treated as a new person in any other way. She continues to have ownership of the property that she acquired when she was healthier. She continues to be responsible for any debts that she incurred previously. When she dies, the will that she wrote when she was of sound mind will be operative.

Practical Problems with Advance Directives

There are practical barriers to the use of advance directives. Although this entry describes an ideal of advance care planning in which patients first consult with loved ones and physicians, and then document their wishes, most advance directives are not products of this sort of process. Patients often write advance directives when they create an estate will. They may leave the document in a safe-deposit box or with their lawyer. Occasionally, they will give it to a family member. All too often, they will not take it to their doctors. Advance directives created in this manner might not be available when needed for decision making. Because there has been no discussion with physicians about life goals and values and how medicine fits into these, the physicians are deprived of critical information that is needed in interpreting the advance directives. Patients, meanwhile, might have signed documents that they do not completely understand and that are not truly in keeping with their values. The same is true for documents created in the hospital in the midst of a medical crisis. To overcome this problem, physicians need to routinely ask their patients if they have advance directives.

Furthermore, advance directives may not be available when needed. They often do not accompany patients transferred to the hospital from a nursing home. Patients may not be under the care of their regular doctor when they are hospitalized, and the hospital staff may not know about the existence of an advance directive. In addition to the federal regulations requiring hospitals to ask about advance directives, electronic medical records and registries of advance directives may also help with this problem.

Another problem is that physicians are often reluctant to raise the subject with their patients. They may be under overwhelming time constraints. They may have never been trained to discuss this issue and are not sure how to introduce the topic. They may be worried that they will give patients the impression that they are "giving up" on them or that they think they will die soon. If they have focused in past discussions on interventions rather than patient values and goals, they may have found these discussions frustrating and unhelpful.

Time constraints are difficult to overcome. Physicians could dedicate visits to discussing advance directives; but insurance companies may not pay for such a visit, and many patients may not wish to make a separate trip to the doctor for this purpose. The use of booklets and other tools to introduce the concepts involved in advance care planning may help physicians efficiently use their time to answer specific questions patients may have and to guide patients through the process. Enlisting nurses and social workers to help patients with the advance care planning process may also help.

Although physicians are often worried that patients will be put off by a discussion about advance care plans, surveys show that most patients want to discuss these issues, early in the course of their disease, and that they think that the doctor should bring up the topic. Nevertheless, there will be some patients who are not ready to discuss advance directives. Healthcare providers must be sensitive to these patients. Advance care planning is a process that should be offered to patients, not forced upon them.

The root cause of much of physicians' reluctance stems from lack of training in how to have these discussions. With training, physicians can feel more comfortable having these discussions, can learn how to deal with patients' emotional responses, and can have effective discussions that the physician will find truly helpful in caring for patients.

Clinical Use of Advance Directives

Rarely do advance directives clearly dictate the care that should be given to a patient who lacks decision-making capacity. Generally, some interpretation of the document is required, a responsibility left to the named surrogate decision maker, other family members, and the healthcare team.

When a patient who has an advance directive lacks decision-making capacity and is seriously ill, the healthcare providers should discuss the situation with the named surrogate and other appropriate loved ones. Reviewing the advance directive, those involved should decide what they think the patient would have wanted under the current circumstances. People who are not used to working with advance directives often misunderstand them. For example, an advance directive may state that life-sustaining treatment should be forgone but mention only the scenario of permanent unconsciousness. If the patient under discussion has had a devastating stroke but is not permanently unconscious, the document itself may not provide much evidence of the patient's wishes. In this case, it will be necessary to proceed almost as if there were no advance directive. In such situations, prior discussions involving the patient, his loved ones, and physicians about the patient's values regarding prolongation of life would be extremely useful. For example, when the patient under discussion expressed the preference to forgo treatment in the case of permanent unconsciousness, he might have given reasons for this that can shed light on his likely preferences in the circumstances of the stroke.

Even when there seems to be an applicable advance directive, there may be disagreement among family members or between family members and the healthcare team regarding the patient's care. These disagreements can occur even when everyone agrees that the advance directive applies to the current circumstances. Loved ones may disagree with the content of the advance directive, believe that the patient changed her mind, or believe that the patient made an error. In these situations, it helps to focus the decision makers on what the patient would have wanted and why the advance directive was written in the first place. Healthcare providers should, however, listen carefully to evidence that the patient changed her mind. This is a realistic possibility, and patients do not always remember to destroy the advance directive or issue a written revocation.

Other times, disagreements may occur because of differing interpretations of the document. Loved ones or healthcare providers may disagree on the meaning of a "reasonable chance of recovery," for example. In this case as well, it is helpful to try to focus decision makers on what they think the patient would have wanted.

Although it is best to gain a consensus of all the interested parties, especially about forgoing life-sustaining treatment, ultimately a named proxy has the final decision. Healthcare providers who wish to override proxies based on a patient's written advance directive should be wary. It is not clear that all patients would want their proxy's or loved one's wishes overruled. Because people often write advance directives to relieve family members of the burden of decision making, the patient may not have wanted it followed if doing so would cause tremendous anguish. In a 1992 study, Ashwini Sehgal and colleagues found that over half of a group of dialysis patients thought their doctors or proxies should have at least some leeway to interpret their advance directive. Rather than taking unilateral actions against the wishes of proxies, healthcare providers might be best off consulting with the hospital ethics committee.

When no advance directive is present, decision making often proceeds in a similar fashion. Generally, the physician will initiate a discussion with those who seem closest to the patient to discuss the patient's medical situation. Physicians should then focus the family on discussing whether the patient had ever discussed similar situations and what he or she would want under the current situation. Some states have laws regarding who is the surrogate decision maker in the absence of a written durable power of attorney. In other cases, the healthcare providers should try to determine who was closest to the patient or may find it best to reach a consensus decision. Advance directives do not change this process much but are a mechanism for the patient to provide evidence about his own wishes.

Conclusion

Advance directives provide documentation of patients' wishes for medical care in the event of future incompetence. Healthcare providers can assist patients in developing useful advance directives through the process of advance care planning. The goals of advance care planning will be different for patients at different stages of life and health, but the aim in all cases is to help patients articulate health-related values in a manner that can assist decision makers when the patients can no longer speak for themselves. In this manner, patients' autonomy and uniqueness as individuals can be respected.

gary s. fischer

james a. tulsky

robert m. arnold

SEE ALSO: Autonomy; Beneficence; Cancer, Ethical Issues Related to Diagnosis and Treatment; Competence; Conscience, Rights of; Dementia; Death, Professional Education; DNR; Ethics Committees and Ethics Consultation; Informed Consent; Life Sustaining Treatment and Euthanasia; Medical Futility,; Nursing Ethics; Pain and Suffering; Palliative Care and Hospice; Right to Die; Surrogate Decision-Making

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