Mrs. G is 63 years old and has no significant history of illness. She presents for a routine visit to her family physician. She has read newspaper articles about living wills and thought that this was something she ought to address, but had never taken it further. In the physician’s waiting room, she sees a leaflet on advance directives and decides that today would be a good day to learn more about this.
Mr. H is a 40-year-old man who was diagnosed 6 months ago with advanced glioblastoma multiforme, an incurable brain tumor. He presents to his oncologist with symptoms of early cognitive dysfunction. The physician considers what Mr. H should be told about advance directives.
Advance care planning is a process whereby a patient, in consultation with healthcare providers, family members, and important others, makes decisions about his or her future healthcare (Teno et al., 1994). This planning may involve the preparation of a written advance directive (Emanuel et al., 1991). Completed by patients when they are capable, advance directives are invoked in the event that the patient loses decision making capacity. Advance directives may indicate what interventions patients would or would not want in various situations, and whom they would want to name as healthcare surrogates to make treatment decisions on their behalf.
Advance care planning helps to ensure that the norm of consent is respected when sick people are no longer able to discuss their treatment options with physicians and thereby exercise control over the course of their care. This norm is grounded in the principle of self-determination and respect for autonomy, a classic expression of which is Justice Benjamin Cardozo’s statement in 1914 that “Every human being of adult years and sound mind has the right to determine what shall be done with his own body” (Faden et al., 1986).
Advance care planning also rests on the principle of respect for persons, and this respect must extend to those whose cultural values emphasize the interdependence of human beings and the well-being of the family or community as a whole. Advance care planning recognizes that sick people suffer a loss of dignity when they cannot command respect for their considered and cherished intentions and that such intentions may be shaped by cultural values (Kagawa-Singer and Blackhall, 2001).
In the USA, state laws allow individuals to complete advance directive documents and to name surrogate healthcare decision makers, and a federal law requires all patients admitted to hospital to be notified of this right (US Congress, 1990). Most European countries have followed suit with provisions for advance care planning (Fassier et al., 2005).
Despite considerable interest and widespread legislation in favor of advance directives, advance care planning has not been as successful as proponents would wish. In multiple surveys, patients and providers expressed positive attitudes towards advance directives (Lo et al., 1986; Shmerling et al., 1988; Frankl et al., 1989; Stolman et al., 1990; Emanuel et al., 1991; Gamble et al., 1991; Joos et al., 1993), yet they seldom complete such forms (Emanuel et al., 1991). With considerable effort, a variety of interventions can increase the use of advance directives (Cohen-Mansfield et al., 1991; Hare and Nelson, 1991; Sachs et al., 1992; High, 1993; Markson et al., 1994; Rubin et al., 1994) but only to modest levels and with minimal effect on care (Hanson et al., 1997a; Landry et al., 1997). One large study to assess the effectiveness of advance care planning in the care of dying patients (SUPPORT) found that it had no impact on physician–patient communication, incidence, or timing of written do-not-resuscitate (DNR) orders, physicians’ knowledge of patients’ preferences, the number of days spent in the intensive care unit receiving mechanical ventilation, the level of reported pain, or the use of hospital resources (SUPPORT Principal Investigators, 1995).
This lack of effect may result from several issues. The communication between clinicians and patients that guides the creation of advance directives may be flawed (Tulsky et al., 1998). Some patients change their views as time passes (Emanuel et al., 1994; Danis et al., 1994) and others request life-prolonging interventions that subsequently prove to be unrealistic. Substitute decision makers are not always sure that a patient’s situation is equivalent to that described in an advance directive (Tulsky, 2005). Furthermore, cultural values play an important role in advance care planning, and advance directives may not be acceptable to some groups of people or may be variably interpreted (Caralis et al., 1993; Blackhall et al., 1995; Carrese and Rhodes, 1995). In a review of more than 100 research articles, advance care planning, and advanced directive forms, Miles and colleagues (1996) concluded, “Advance treatment preferences have been shown to be difficult to form, communicate, and implement.” The key question is why?
One answer may be that the traditional conceptual framework underlying advance care planning and use of advance directive forms is not rooted in the needs and experiences of patients. Traditionally, advance care planning was thought to help people to prepare for treatment decisions in times of incapacity, to be based on the ethical principle of autonomy, and to focus on completing written advance directive forms within the context of the physician–patient relationship. However, from the perspective of patients, advance care planning also helps patients to prepare for death, is influenced by personal relationships, is a social process, and occurs within the context of family and loved ones (Singer et al., 1998). Thus, the process of advance care planning and outcome measures used in previous research may not have focused on the issues of greatest importance to patients and their loved ones.
The original goal of the movement for advance care planning – from the perspective of ethicists and legal scholars – was to assist patients to make treatment decisions for the event of incapacity. However, from the patient’s perspective, the primary goal of advance care planning is more commonly preparing for death and dying (Martin et al., 1999). People struggle to find ways to cope with death (Field and Cassel, 1997). Once a central ritual of social and religious life, death has been privatized, desacralized, hidden behind institutional walls, and implicitly made taboo. Advance care planning can help people to prepare for death, which, from the patient’s perspective, tends to mean helping them to achieve a sense of control, relieving burdens on loved ones, and strengthening or reaching closure in relationships with loved ones (Martin et al., 1999). Given this reconceptualization, clinicians approaching patients to discuss advance care planning ought to keep in mind the following goals for the process (Martin et al., 2000).
Autonomy is central to advance care planning, but not primarily in the sense of controlling each treatment decision, as has generally been assumed. Bereaved family members feel that improved communication would improve end of life care, but that focusing on specific treatment decisions avoids considerations of death and “may not satisfy the real needs of dying patients and their families” (Hanson et al., 1997b). Achieving an overall sense of control in the dying experience is an important psychosocial outcome. Advance care planning can help people to achieve a sense of control by thinking beyond an itemized list of concrete objectives to a situation that maps a personal approach to dying by considering the values and goals that should guide their dying (Singer et al., 1998; Martin et al., 1999).
People who are dying want to attend to the needs of their loved ones, and patients fear that loved ones may bear the burdens of a protracted terminal illness. Advance care planning allows people to determine settings for care and limits for life-sustaining treatments that may inappropriately lengthen dying, and it facilitates reflective discussion of values, goals, and preferences with loved ones in a non-crisis environment. This may help loved ones who bear the burdens of anxiety and physical care through a protracted dying process. Advance care planning may also help to prepare those who serve as substitute decision makers in a crisis, and mitigate the guilt felt by loved ones who must make difficult substitute decisions with respect to life-sustaining treatment. Advance care planning can also help the healthcare team to be prepared for the patient’s death.
People live in a web of social ties and generally fear dying in isolation. Advance care planning facilitates communication about death and thus provides an opportunity to strengthen relationships with loved ones. Advance care planning may help people to settle their differences with loved ones, including giving or seeking forgiveness for past disagreements. Reflecting on life and the meaning of death, and sharing those reflections with loved ones may also help to strengthen personal relationships.
Decision making about end of life is influenced by culturally shaped values. The principle of autonomy is the dominant ethic of healthcare in North America and Western Europe. Yet for many other people, autonomy may not be the dominant value. For example, a study of attitudes toward end of life decision making among people of Chinese origin found that they were indifferent or negatively disposed to advance care planning. These people reflected a world view that values interdependence, compassion, and protection, by contrast with independence and autonomy. Consequently, to be consistent with a patient-centered approach, healthcare professionals should discuss patient’s goals about end of life decision making.
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 to 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 (Pearlman et al., 1993). This expanded view of advance care planning allows people to think about their mortality and legacy. From such discussions, healthcare providers can help patients to 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 forgone? Are there particular treatments aimed at symptomatic relief that should be employed?
Even with this emphasis on the discussion and process, advance directive forms remain useful as they provide a legal, written record of the patient’s values and preferences that may be useful in some end of life scenarios. Numerous advance directive forms have been developed by organizations, governments, and academics. Instruction directives (also called living wills) describe what type of care a person would or would not want in various situations. Proxy directives (sometimes called durable powers of attorney for healthcare) indicate who a person would want to make treatment decisions on his or her behalf. These two types of directive are designed to accomplish different, important, and complementary objectives.
For most situations, we recommend that advance directive forms contain both instruction and proxy directives. Furthermore, we recommend detailed instruction directives that systematically lead people through a process that helps them to think about the form and to articulate values, goals, and preferences relevant to healthcare decisions. Most function as a worksheet and then a form for documentation. Non-detailed instruction directives instead provide limited space, usually a few lines, in which people may write instructions. General instructions noted on a non-detailed directive are generally inconsistent with specific treatment preferences (Schneiderman et al., 1992). Moreover, compared with a detailed advance directive, a non-detailed advance directive results in less-uniform interpretation by physicians (Mower and Baraff, 1993).
When detailed, scenario-based instruction directives with intervention choices are used, it is possible to derive a patient’s personal thresholds for intervention (Emanuel, 2007). These can be particularly helpful when inferring from scenarios in a prior statement to real situations. For instance, in some documents, scenarios are arrayed in a sequence that approximates a gradient of prognosis severity (Emanuel et al., 1991). For each scenario, potential interventions are arranged approximately by level of burdensomeness. Individuals tend to have thresholds regarding burdensomeness and prognosis that can be seen when all the options are filled in. This approach is supported by the finding that most patients are concerned about prognosis and treatment burden when they engage in advance care planning (Weeks et al., 1998; Fried et al., 2002; Fried and Bradley, 2003).
Yet, as carefully as such documents may be completed, rarely do advance directives clearly dictate the care that should be given to a patient who lacks decision-making capacity (Fischer et al., 2004). 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 clinicians should discuss the situation with the named proxy 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. It is easiest when the situation under consideration matches well the scenarios described in the advance directive. However, frequently the advance directive form may not be sufficiently detailed to guide treatment, in which case it may be necessary to proceed almost as if there were no advance directive. In such situations, prior discussions involving the patient, his or her loved ones, and clinicians about the patient’s values regarding medical treatments would be extremely useful.
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 (Fischer et al., 2004). Loved ones may disagree with the content of the advance directive, believe that the patient changed his or her mind, or believe that the patient made an error. Disagreements may occur because of differing interpretations of the document, such as the meaning of a “reasonable chance of recovery.” 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.
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. One study showed that over half of a group of patients on dialysis thought their doctors or proxies should have at least some leeway to interpret their advance directive (Sehgal et al., 1992). In such situations, clinicians may be best off consulting with the hospital ethics committee.
Advance care planning enables clinicians to respect patients’ wishes for medical care in the event of future incompetence. 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 to articulate health-related values in a manner that can assist decision makers, allow patients to maintain control, relieve burdens on others, and strengthen important personal relationships.
Mrs. G is requesting information about advance care planning. Her physician should refer her to one of the available information sources or provide her a form and encourage her to begin the process of advance care planning with her preferred proxy decision maker. After a period of time, Mrs. G and her substitute might together meet with the physician. At this meeting, the physician can review Mrs. G’s treatment preferences to ensure that she has understood the information in the advance directive form and is capable of completing it. If her health situation changes, the physician should recommend that Mrs. G update her advance directive.
Mr. H, unfortunately, may soon be incapable of making healthcare decisions. The physician should raise the subject of advance care planning with him in a sensitive manner and follow the same steps as described for Mrs. G. However, in the case of Mr. H, the physician will have to pay particular attention to the issue of capacity. This situation also represents an opportunity for the physician to tailor the information considered by Mr. H in advance care planning to the likely future of progressive cognitive deterioration. It is also an opportunity for the patient, his family, and the physician to begin to prepare for his impending death.
An earlier version of this chapter has appeared: Singer, P. A., Robertson, G., and Roy, D. J. (1996). Advance care planning. CMAJ 155: 1689–92. Portions from the following sources were also used: Martin, D. K., Emanuel, L. L., and Singer, P. A. (2000). Planning for the end of life. Lancet 356: 1672–6; Fischer, G. S., Tulsky, J. A., and Arnold, R. M. (2004). Advance Directives. In Encyclopedia of Bioethics, 3rd edn, ed. S. G. Post. New York: Macmillan Reference USA.