BACKGROUND

Americans express strong views when asked about the kinds of care they want when they are seriously ill and approaching death. As noted in earlier chapters, in general they prefer to die at home, and they want to remain in charge of decisions about their care (CHCF, 2012; Fischer et al., 2013; Gruneir et al., 2007; Tang, 2003). However, evidence suggests these wishes are not likely to be fulfilled:

• In 2009, one in four adults aged 65 and older died in an acute care hospital, 28 percent died in a nursing home, and one in three died at home (Teno et al., 2013). Among all decedents, 30 percent were in an intensive care unit (ICU) in the month preceding death.
• An estimated 40 percent of all adult medical inpatients are incapable of making their own treatment decisions because of unconsciousness, cognitive impairment, or inability to express a choice (Raymont et al., 2004).
• Among nursing home residents, 44-69 percent cannot make their own medical decisions (Kim et al., 2002).
• Fully 70 percent of decedents participating in the Health and Retirement Study who were aged 60 and older at death and who faced treatment decisions in the final days of their lives were incapable of participating in these decisions (Silveira et al., 2010).
• The vast majority of critically ill patients cannot participate directly in decision making (Nelson et al., 2006), nor are they likely even to have met the intensivist physicians caring for them (Gay et al., 2009).

The Institute of Medicine (IOM) report Approaching Death (IOM, 1997) reviews many of the then-recognized shortcomings of the advance directive approach:

• patients' and families' lack of awareness of or interest in completing forms;
• clinicians' unwillingness to adhere to patients' wishes;
• difficulties in having meaningful family conversations about patients' wishes and in making choices in the face of prognostic uncertainty;
• lack of institutional support and processes for completing advance directives; and
• cultural and legal factors, including resistance within the medical culture as well as differences in families' cultural traditions.

A study of public views conducted around the same time that report was published reinforced these concerns (American Health Decisions, 1997). Respondents noted that there are many reasons why they or their loved ones avoid talking about death, including that it is upsetting or depressing or is an issue to be addressed in the future. They also felt that the medical system's emphasis on achieving cure and sustaining life “even when death is inevitable—can ironically result in treatments that prolong life ‘unnaturally’ and cause unnecessary suffering.”

Some of the problems identified 17 years ago have since diminished or been remedied, while others have become more acutely apparent. The mischaracterization of advance care planning as “death panels” during debates about the Affordable Care Act (see Chapter 6) suggests that misunderstandings about the process have persisted and, indeed, intensified.

The remainder of this section reviews the four-decade history of advance directives/advance care planning. Before proceeding, however, a note about these two terms is in order. Approaching Death draws a useful distinction between advance directives (documents written or completed by patients) and the broader concept of advance care planning. As Box 3-1 describes, advance care planning is a process for setting goals and plans with respect to medical treatments and other clinical considerations. It brings together patients, families, and clinicians “to develop a coherent care plan that meets the patients' goals, values, and preferences” (Walling et al., 2008, p. 3896). It can begin at any point in a person's life, regardless of his or her current health state; is revisited periodically; and becomes more specific as changing health status warrants.

BOX 3-1

Terms Related to Advance Care Planning. Advance care planning entails a number of different kinds of instruments. In this report, the committee has tried to maintain the distinctions among them, but the medical literature reviewed does not always do so, and (more...)

As anticipated in Approaching Death, the current emphasis has evolved considerably from a debate about specific legal forms and living wills to acceptance of the more general concept of advance care planning (Sabatino, 2010). Because much of the large body of research in this area focuses on advance directives (a tangible product) rather than the broader and more difficult to document topic of advance care planning, this chapter likewise talks about directives. It should be noted, however, that while the committee consistently found shortcomings in advance directives, it is more optimistic about the potential benefits of advance care planning.

The following historical review draws on a report prepared by the U.S. Department of Health and Human Services (HHS, 2008) titled Advance Directives and Advance Care Planning. That report resulted from a request by Congress in 2006 that HHS conduct a study of advance directives and how to promote their use.

For decades, people with advanced serious illnesses relied almost unquestioningly on their physicians' judgment regarding treatment matters, trusting that physicians would act in their patients' best interests as a matter of professional and personal ethics. As technology and medicine advanced, increasingly intensive interventions could keep people alive with breathing tubes and feeding tubes and high doses of powerful drugs. In many cases, people recovered and resumed their former lives, but in other cases, the lives these technologies sustained were not optimal.

Around the time public awareness of the darker potential of “heroic measures” was growing, so was the consumer rights movement. In that context, Americans sought to assert their right to control whether life-sustaining treatments were used in their care, especially when the outcome was doubtful. Among the earliest attempts to codify this new right was the California Natural Death Act of 1976² (Towers, 1978), which made the written advance directives of terminally ill patients binding on their physicians. The California law was quickly followed by similar actions in other states and upheld in state and federal courts. In 1990, Congress passed the Patient Self-Determination Act,³ which required all health care facilities receiving reimbursement from Medicare or Medicaid “to ask patients whether they have advance directives, to provide information about advance directives, and to incorporate advance directives into the medical record” (HHS, 2008, p. x), setting the stage for subsequent emphasis on this type of form.

Public concern about advance directives increased in the wake of several well-publicized legal cases that centered on the right to withdraw treatment from people lacking decision-making capacity. At the same time, new state laws outlined do-not-resuscitate protocols—medical orders signed by a clinician—for use outside as well as within the hospital. Building on this concept of having medical orders in place to guide treatment, a new model was pioneered in Oregon for recording a broader range of preferences. These Physician Orders for Life-Sustaining Treatment (POLST), now being approved in an increasing number of states (see Box 3-1 and Annex 3-2) and described later in this chapter, are actionable in and out of the hospital, even in emergency situations.

BOX 3-2

What to Keep in Mind When Choosing a Health Care Agent. The person you select as an agent must: Meet legal criteria (for example, be a competent adult and at least age 18 years)

Regional and national efforts to encourage advance care planning have evolved. Community Conversations on Compassionate Care (CCCC),⁴ operating in Upstate New York, was launched with a press conference of spiritual leaders in Rochester, New York, in 2002 to encourage everyone aged 18 and older to start early advance care planning discussions. The Center for Practical Bioethics works extensively in the Midwest and throughout the United States to effectively engage various population groups through religious, veterans, and other organizations with which they are connected and makes advance directives and related resources available through its Caring Conversations^® initiative.⁵ Nationally, the American Bar Association Commission on Law and Aging⁶ has produced a comprehensive “Consumer's Toolkit for Health Care Advance Planning” covering important issues such as selecting a health care agent and weighing odds of survival, as well as state-specific advance care planning information (American Bar Association, 2005). National Healthcare Decisions Day⁷ has been held on or near April 16 since 2008. This 50-state public awareness campaign is designed to motivate people to select a health care agent and prepare a living will, to advise them where to obtain these documents, and to link them to resources that can help in having difficult conversations. More recently, The Conversation Project⁸ was launched by author Ellen Goodman in 2010 as a grassroots public campaign designed to change and increase the conversation around end-of-life care long before a medical crisis occurs (see Chapter 6 for more detail on these and other initiatives).

Medicare covers a one-time initial preventive physical examination (the Welcome to Medicare Preventive Visit) that includes end-of-life planning as a required service for Medicare beneficiaries who desire it (CMS, 2012a). Although this is a one-time service for which the physician is paid, it is seldom used. Of the millions of beneficiaries newly enrolled in 2011, Medicare paid for preventive visits for only approximately 240,000 (CMS, 2012b); the number who chose to receive the advance care planning information is unknown, but was undoubtedly smaller.

At present, all 50 U.S. states and the District of Columbia have laws supporting advance directives and the appointment of a health care agent (through what is often called a durable power of attorney for health care; see Box 3-1) (Gillick, 2010). An examination of policies regarding advance directives in a dozen large nations around the world⁹ found that “the U.S. stands alone in terms of attention paid to advance directives, perhaps due to the emphasis on individual rights and [a] highly litigant system” (Blank, 2011, p. 210). This chapter examines what the U.S. effort in this area over the past 40 years has accomplished. (For a discussion of the 2009 controversy over death panels, see Chapter 6.)

THE CURRENT STATE OF ADVANCE CARE PLANNING AND WHAT IT ACHIEVES

The ethical principle of autonomy underlies much of the thinking about advance care planning in the United States. But the principle of autonomy—particularly with a growing segment of the population that highly values other principles, such as family cohesion—is showing signs of stress. Trying to determine in advance how one might want to be treated in some hypothetical future state is highly problematic (Loewenstein, 2005). Moreover, according to the President's Council on Bioethics (2005, p. xix), the process gives “major ethical weight to personal autonomy and choice and personal pride in self-sufficiency. But in so doing, it deliberately ignores the truth of human interdependence and of our unavoidable need for human presence and care.” And human presence and care are exactly what is needed by the overwhelming proportion of people unable to make their own decisions near the end of life.

Who Have Made Their Wishes Clear

It's always too early, until it's too late.

—The Conversation Project, 2013

Most people have no documentation of their wishes regarding end-of-life care, and few have talked with either their family or physician about the subject (Clements, 2009). (See also the subsequent discussion of specific population groups.) A 2013 national survey of nearly 2,100 Americans aged 18 and older found that, while 90 percent believe having family conversations about wishes at the end of life is important, fewer than 30 percent have done so (The Conversation Project, 2013).

I have served as a clinical chaplain in home health hospices and as an independent health care ethics consultant and educator for community-based organizations over the past 10 years. I have learned over this time that it is extremely difficult for patients and their families and caregivers to address end-of-life decisions. Changes in the patient's physical, mental, and spiritual states, the news of the diagnosis, the impact on family, friends, caregivers, and even the community at large, all contribute to the emotional stress of decision making at this point in a person's life.^*

*

Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C.

According to results of a 2012 survey (CHCF, 2012), the demographic groups most likely to have had a discussion about end-of-life issues with a loved one were those aged 65 and older, whites, people with higher education and income, and those with one or more chronic conditions (see the next section for discussion of differences among population groups). And while 42 percent of respondents reported having such a discussion, only 23 percent had put their wishes in writing. More than three-quarters of respondents said they would “definitely” or “probably” want to talk with their doctor about their wishes for medical treatment toward the end of life if they were seriously ill (47 and 32 percent, respectively); however, more than 90 percent said a doctor had never asked them about those issues. Among respondents aged 65 or older—the prime age group for having chronic illnesses—84 percent had not been asked.

The older people are, the more likely they are to have participated in some kind of advance care planning activity, as shown in Table 3-1. Other factors that increase the likelihood of having an advance directive include more education, having a close family member or confidant, recent hospital admission, and having a close family member who died with pain or suffering (Carr and Khodyakof, 2007). Although marital status and number of children did not affect the likelihood of having an advance directive in the study by Carr and Khodyakof (2007), those with dependent children were significantly less likely than those without dependent children to have any advance care planning documents in place (Nilsson et al., 2009).

TABLE 3-1

Participation in Advance Care Planning Activities, U.S. Adults.

According to the HHS (2008) review, advance care planning is least likely to take place in hospitals and intensive care settings, perhaps because of patients' physical, mental, or cognitive state or because the overriding impulse is to provide what the authors call aggressive treatment. By contrast, nursing home residents are more likely than individuals in other care settings to complete advance directives.

Why People Do Not Participate in Advance Care Planning

Many factors contribute to whether people complete some sort of advance directive form. For example, people who believe doctors, not patients, should make decisions about health care and those who have a greater fear of death are significantly less likely to complete a form (Carr and Khodyakov, 2007). However, when people reluctant to complete advance directives hear the personal stories of others who have had to make end-of-life decisions for a loved one without any guidance, the desire to save their family from these painful experiences can become a prime motivator for putting their own wishes in writing (Halpern, 2012a; Steinhauser et al., 2000a).

The many and varied requirements embedded in state laws covering advance directives also discourage their completion. Problems include poor readability and lack of clarity in some state-mandated forms; restrictions on who can serve as health care agents and limitations on their authority; procedural requirements, including the need for witness signatures or notarization; inadequate reciprocity across states; and inadequate reflection of different religious, cultural, and social characteristics of individuals and families (Castillo et al., 2011).

According to Fried and colleagues (2010, p. 2329), advance care planning “may best be understood as a health behavior, for which individuals have highly varied motivation, barriers and facilitators, and self-efficacy regarding their participation.” It may be efficacious to tailor information to the readiness of individuals to participate in specific advance care planning activities, an approach similar to how the stages of change model has been used to help people adopt health-promoting behaviors, such as smoking cessation (Orleans and Cassidy, 2011).¹⁰ A stages of change strategy for advance care planning would approach people differently depending on whether they needed help in completing an advance directive, naming a health care agent, or communicating their preferences to their physician or family members (Fried et al., 2010). Individuals vary greatly in their readiness to participate in each of these activities.

A 2012 California survey (CHCF, 2012) asked adults (all ages) whether they had spoken with a loved one about their wishes for end-of-life medical treatment. Among those who had not, the most important reasons given were

• too many other things to worry about right now (41 percent);
• don't want to think about death or dying (26 percent), cited by 38 percent of Latinos and 26 percent of Asians and Pacific Islanders, but only 15 percent of African Americans and of non-Latino whites; and
• family member did not want to discuss it (13 percent).

Another reported reason patients (versus the public) do not participate in advance care planning is that they “would rather concentrate on staying alive than talk about death” (Ganti et al., 2007; Knauft et al., 2005, p. 2190).

Reluctance to engage in advance care planning sometimes originates in patients' sense that the initiative to do so should come from clinicians—hence “the importance of clinicians bringing up advance care planning with their patients who may be fearful of discussing the topic with family or be waiting for some one else to initiate discussion” (Phipps et al., 2003, p. 553). Finally, people often do not realize they have a terminal disease, what that disease is, or that they are dying (Gardiner et al., 2009).

My mother died in January 2012. She was in a nursing home for the last 7 weeks of her life and in a hospital for 2 weeks prior to that. At no time did a doctor or nurse say to me, “I'm sorry, but there is nothing we can do for your mother—let's plan for her to have an easy death.^*

*

Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C.

The Choice of a Health Care Agent

With respect to the choice of a health care agent, the following general points apply:

• Married people overwhelmingly choose their spouse (Carr and Khodyakov, 2007). Spousal proxies have been found to be more accurate than adult children in their assessment of an elder's wishes (Parks et al., 2011; but see the quote below for a counterexample), with wives being more accurate than husbands (Zettel-Watson et al., 2008).
• Unmarried and widowed parents choose a child and rarely some other relative, friend, or professional, although in families with only one or two children, a child is less likely to be selected (Carr and Khodyakov, 2007).
• People without a spouse or children choose another relative, such as a sister or a brother or perhaps a friend or a colleague (Carr and Khodyakov, 2007).

The above pattern is not universal, however, and “individuals will innovate to meet their own needs and the presumed needs of their loved ones” (Carr and Khodyakov, 2007, p. 188)—for example, when they believe decision making would be too stressful. Being a health care agent is a difficult job and an extra burden on an already stressed spouse, partner, parent, or child. Close family members may be unable to separate their feelings from the needs of the situation, be unwilling to face the prognosis or talk through the patient's wishes, or be unable to handle conflicts that arise among family members or with clinical staff. Family members who can answer yes to the following questions are less likely to struggle with the agent role: Do you have prior experience as someone's health care agent, and have you had prior conversations with the patient about treatment preferences? (Majesko et al., 2012). Box 3-2 lists some of the key considerations in an individual's choice of a health care agent.

My mother was 99 when she fell, fractured her hip, had a mild heart attack, and became unconscious. EMTs [emergency medical technicians] took her to the hospital. The surgeon there said she needed a hip operation to relieve the pain. I knew Mom would not want that. For several years, she had told me and my stepfather that she “was ready to go” and didn't care about living to 100. Her quality of life had clearly deteriorated.

When I saw Mom in the ICU, she was surrounded by beeping monitors and tubes, with nurses running in and out. Her head thrashed from side to side, and she couldn't recognize anyone. She kept repeating, “I already died once, why am I still here?” and “Let me go, let me go.” It was heartbreaking.

Some years earlier, Mom told me she had assigned me her health care durable power of attorney. I never asked to see the documents, because I thought it would be “impolite.” The day of Mom's crisis, I found out that my stepfather, who was devastated and grieving, had health care power of attorney for Mom, and I was merely the backup. Shockingly, he agreed to the operation, which was scheduled to begin in 3 hours, and I had no legal power to stop it.

I had a hard talk with my stepfather and reminded him of Mom's wishes. An hour before the operation, he agreed to talk to a hospice representative, who said Mom was eligible for hospice at their facility. Three hours later, Mom was in a quiet, machine-free hospice room, on increased pain medication, looking much more tranquil, with calm, relaxed breathing. She died 10 hours later, in that peaceful state. I know we did what she wanted.^*

*

Quotation from a response submitted through the online public testimony questionnaire for this study. See Appendix C.

An obvious and important consideration is the availability of the agent. In a survey of almost 300 physicians regarding their recent experiences with patient decision making, most (73 percent) reported having to make major decisions for patients, for various reasons. One in five reported difficulty contacting agents, and one in four reported never having talked to agents personally (Torke et al., 2009).

Most states have established default systems for authorizing surrogates. Thus, even if a proxy form is not signed or if the chosen health care agent is not reasonably available, a priority list of people who can make decisions if the patient cannot is generally in place. State laws vary, but such lists generally start with the immediate family. In some states, lists include domestic partners or close friends or senior officials in religious organizations, and in some, they include physicians, often in consultation with an ethics committee or other physician (in other states, physicians cannot take on this role). To the extent possible, default surrogates are charged with making decisions (substituted judgment) reflecting to the extent possible the patient's likely decisions, best interests, instructions if any, or personal values (American Bar Association, 2009; Kohn and Blumenthal, 2008).¹¹ If patients have not thoroughly discussed their wishes, however, it is unlikely that surrogates, even family members, can accurately gauge what those preferences would be despite believing to the contrary (Kohn and Blumenthal, 2008).

Although surrogacy laws meet most situations, they fall short, for example, in serving families in which intergenerational and group decision making are highly valued or cultural groups more likely to select a non-family member as health care agent (Kohn and Blumenthal, 2008). Further, the underlying presumption of health care proxy statutes is that people will have a spouse, child, sibling, or close friend whom they can name as their agent. Many people, especially among the elderly, have no such person. While data on the number of such people are lacking, they may represent 3 to 4 percent of the nursing home population alone (Karp and Wood, 2003). In many states, should they become unable to make or communicate their own health care decisions, no one has the authority to make those decisions unless a court deems them legally incompetent and appoints a guardian. Because such guardians may be strangers with little or no evidence of the patient's prior wishes, there is no assurance their decisions will be what the patient would have chosen. In the absence of clear guidance from the patient and in light of the consequent uncertainty, the default decision often is to treat the patient's various conditions regardless of likely benefit.

What Are the Effects of Advance Care Planning on Health Care Agents and Families

Health care agents and surrogates (including those who are family members) are critically important for the 44 to 69 percent of nursing home residents with decisional impairment (Kim et al., 2002). Agents may also make decisions for large numbers of geriatric patients who retain decisionmaking capacity yet defer decisions to family members (Vig et al., 2007).

Even when patients' preferences are clear to health care agents—which too often they are not (Fried and O'Leary, 2008)—the decisions these agents must make do not come without difficulty (Schenker et al., 2012). Moreover, “surrogates are not perfect ambassadors of patient preferences” (Vig et al., 2006, p. 1688). Often, caregivers (usually family members) want life-sustaining measures used even when patients do not (Phipps et al., 2003). At times, health care agents may be required to make a decision at odds with patients' expressed wishes (to die at home, for example) when clinical circumstances evolve differently than anticipated.

Health care agents' decisions inevitably are colored by their own wishes and care preferences, feelings of overwhelming responsibility, religious beliefs, and the desire for family consensus (Fritch et al., 2013; Schenker et al., 2012). Interviews with health care agents have revealed the broad range of bases on which they make their decisions: conversations with patients, the agents' own beliefs and preferences, input from others close to the family, shared values and life experiences, and written documents (Vig et al., 2006).

When health care agents cannot meet patients' requests, they feel regret or guilt that may lead to complicated grief and bereavement (Fried and O'Leary, 2008; Topf et al., 2013).¹⁵ Family decision making can have a significant and sometimes long-term negative psychological impact, including stress, guilt, doubt, grief, and even increased thoughts of suicide, especially among spouses (Abbott et al., 2013; Wendler and Rid, 2011). Wendler and Rid (2011) reviewed the literature on health care agent stressors and identified a number of problems commonly reported by agents, some of which appear to be at least partly remediable (see Table 3-2).

TABLE 3-2

Stresses on Health Care Agents and Examples of Potential Remedies.

Risk factors for complicated grief among bereaved caregivers include fewer years of education, younger age of the deceased, and lower satisfaction with social support (Allen et al., 2013). The care provided by hospices may lead to positive health outcomes, including survival, among the bereaved and may help some people avoid long-term depression and other consequences of complicated grief (Christakis and Iwashyna, 2003). A hospital-based family support specialist who maintains connections with health care agents can provide emotional, communication, decision, and anticipatory grief support (White et al., 2012).

Negative mental health effects among family members of ICU patients in one study were markedly higher (reaching 82 percent) if family members believed the information received from the staff to be too rushed, unclear, or incomplete or if they shared in end-of-life decision making (Azoulay et al., 2005). Having an advance directive reduces bereaved family members' concerns about physician communication or lack of information (Teno et al., 2007). Health care agents may also be helped by previous decisionmaking experiences; effective coping strategies; supportive life circumstances; a belief that their decisions will result in a “good” outcome; and having a clinician who is available and who provides frank information, recommendations, and respect (Back et al., 2010; Vig et al., 2007).

An approach to working with families that supports both emotional reasoning and medical requirements has been suggested, allowing patients, families, and physicians to “expand their medical focus to include disease-modifying and symptomatic treatments and attend to underlying psychological, spiritual, and existential issues” (Back et al., 2003, p. 439). Health care agents who have been well prepared, who have the support of other family members and the clinical team, and who have been given some reasonable leeway in carrying out their role will be able to do so with fewer long-lasting negative effects. Effective preparation has been shown to be best achieved when the patient-agent discussion is guided by a trained facilitator (or other knowledgeable person), when there is an opportunity to discuss concerns, and when patient misconceptions regarding the likely outcomes of treatment are corrected (Fried et al., 2002; Jezewski et al., 2007; Kirchhoff et al., 2010). Grief and bereavement are a natural corollary to losing a loved one; unrelieved stress-related problems are not.

ADVANCE CARE PLANNING AND TREATMENT PREFERENCES AMONG SPECIFIC POPULATION GROUPS

This section describes what is known about advance care planning and treatment preferences among people in specific groups described by age, disability state, religious affiliation, ethnicity, and literacy level. An important caveat is that all of these groups include individuals with a full range of attitudes and preferences, and the generalities that may be derived from population studies may not apply at all to a specific patient and family. Chapter 1 of this report notes the importance of patient-centered care for people nearing the end of life; the wide variation in preferences that exists in any group reinforces the need for end-of-life care that approaches each individual and family as unique.

Differences Across Racial, Ethnic, and Cultural Groups²⁴

Patients' backgrounds, culture, ethnicity, and race influence their perceptions about life, illness, suffering, dying, and death and the meaning they ascribe to these events. These perceptions in turn affect preferences for the kinds of care people want, how much they want to know about their situation and choices, whether and how they want to make treatment choices, whom they want to make those choices if they cannot, and the role of the family in the entire process (Blank, 2011; Kagawa-Singer and Blackhall, 2001).

In the coming years, rapid growth in the proportion of U.S. elderly that are members of racial/ethnic minority groups will challenge clinicians to communicate more effectively with people of many cultural traditions. Between 2010 and 2030, the U.S. white, non-Hispanic population aged 65 and older is expected to increase by 59 percent, whereas the minority population of the same age group will increase by 160 percent (Greenberg, 2011). It is vital, therefore, that clinicians be aware of common differences in perception among racial, ethnic, and cultural groups so that at the very least, they can ask the right probing questions and have a firmer basis for individualized understanding of patients and their families.

As noted above, although there are many differences among individual perspectives and actions within groups, the general pattern in minority populations is one of a lack of advance care planning and a preference for more intensive treatments; poorer communication with clinicians is part of this pattern. Although patients and families may not follow clinicians' advice and recommendations, “avoiding such communication increases the likelihood of poor end-of-life decision making” (Curtis and Engelberg, 2011, p. 283).

In many cultures, collective family decision making—and even sometimes the paternalistic decisions of the family patriarch—is considered as important or more so than patient autonomy (Blank, 2011). Having made reference to the collective wisdom of the family in every other aspect of their lives to that point, dying individuals cannot realistically be expected to make decisions completely on their own or to name a single health care agent. In a presentation to the committee, Rebecca Dresser, a member of the President's Council on Bioethics (2002-2009), suggested that bioethics has had an unintended and at times negative consequence by focusing on autonomy and ignoring guidance and support (Dresser, 2013).

The fact that racial and ethnic minority individuals are less likely to use advance directives or choose hospice care has been noted in numerous studies in different population groups (Johnson et al., 2008; Ko and Berkman, 2010; Ko and Lee, 2013; Muni et al., 2011; Phipps et al., 2003; Waite et al., 2013; Zaide et al., 2013). At the same time, many authors have found associations between minority race or ethnicity and the receipt of more intensive end-of-life care (see, for example, Barnato et al., 2007; Mitchell and Mitchell, 2009; Muni et al., 2011). This pattern may result from a lack of information about advance planning documents and hospice (Wicher and Meeker, 2012) or from lower levels of general or health literacy (Volandes et al., 2008b). However, Volandes and colleagues (2008a) warn that “while attention to patients' culture is important, it is also important to avoid ascribing choices to culture that may actually reflect inadequate comprehension” (p. 700). Despite the often high-pressure, complex situations in which end-of-life decisions must be made, clinicians cannot make assumptions about preferences or take communication shortcuts without jeopardizing the quality of care.

The available body of evidence suggests that multiple factors are at work in forming patient and family preferences and in translating those preferences into care (see Table 3-3). As Ko and Lee (2013, p. 6) state, “Taken together, race/ethnicity can be thought of as a proxy for personal, cultural, and social contexts, so that an individual's values, beliefs, and personal circumstances are necessary for [understanding] his or her [advance care planning].”

TABLE 3-3

Summary of Patient and Family Factors in End-of-Life Decision Making Among Individuals of Different Races, Ethnicities, and Cultures.

A relative lack of advance care planning is seen among black, Hispanic, and Asian patients across socioeconomic groups. It is seen as well across care settings, including hospitals and nursing homes and even in intensive care, where patients are least likely to be able to make their own decisions and the need for such planning is greatest (Frahm et al., 2012; Muni et al., 2011; Reynolds et al., 2008). “Advance directives, which are generally accepted in western civilization, hold little or no relevance within the [black and minority ethnic] population” (Cox et al., 2006, p. 20), including Asian cultures, in which family decision making predominates (Blank, 2011), and American Indian cultures, which hold different views from those typical of the white, non-Hispanic population regarding autonomy and informed consent (Colclough and Brown, 2013).

Asians

Whereas one U.S. study of patients with head and neck cancers found that more than 81 percent did not want anyone else present at the time of diagnosis (Kim and Alvi, 1999), patients from family-centered cultures such as the Japanese are more likely to want a relative present for such difficult conversations (Fujimori and Uchitomi, 2009). A review of the literature indicates that Asian patients in general may be less likely than patients of other cultural backgrounds to want an estimate of life expectancy and more likely to have family present when receiving bad news (Fujimori and Uchitomi, 2009). In a separate study of more than 500 Japanese cancer patients, Fujimori and colleagues (2007) found that married patients, those with less helplessness/hopelessness, and those with more formal education preferred to discuss life expectancy. Still, the majority of these patients preferred to have their physician explain the status of their illness, break bad news honestly and in a way that is easy to understand, and explain the treatment plan.

African Americans

As noted, African Americans are less likely than white non-Hispanics to express any treatment wishes or to have written advance care planning documents. Compared with whites, they also are more likely to report inadequate or problematic communication with physicians (Trice and Prigerson, 2009), to have greater concerns about staying informed about the illness, and to give the care their family member received a lower rating (Welch et al., 2005). In response, some efforts have been made to carefully tailor the messages regarding advance care planning to African American (as well as other cultural) communities. One example is the comprehensive approach of Gloria Anderson called “What Y'all Gon' Do With Me?: The African-American Spiritual and Ethical Guide to End of Life Care” (Anderson, 2006).

A study involving New York State nursing homes found lower rates of hospice use and higher rates of in-hospital deaths among blacks than whites: 40 percent of black patients and 24 percent of white patients died in hospitals, a differential accounted for largely by a higher use of feeding tubes and a lower use of do-not-resuscitate and do-not-hospitalize orders among black patients (Zheng et al., 2011). Overall, according to the authors (p. 996), “Other conditions being equal, residents from facilities with higher concentrations of blacks have higher risk of in-hospital death and lower probability of using hospice.” Further examination is needed of why differentials in use occur by diagnosis and type of nursing home, and especially how these differentials may affect quality of care and outcomes.

Some evidence suggests that the gap between African American and white patients in the use of hospice has been shrinking. Between 1992 and 2000, the hospice use rate for whites doubled and for African Americans increased almost four-fold (Han et al., 2006). Differences by race and ethnicity still are seen, however (see Table 3-4). Blacks are underrepresented in the proportion of deaths that occur in hospice, which has been attributed, at least in part, to the Medicare Hospice Benefit's requirement that enrollees give up curative efforts (Wicher and Meeker, 2012).

TABLE 3-4

Race and Ethnicity of U.S. Decedents, and Hospice Patients, 2011.

The well-documented historical abuse of African Americans in medical research, dating back more than 150 years, continues to ripple throughout the health care enterprise in many parts of the United States. The author of the award-winning book Medical Apartheid says people tried to discourage her from writing the book, claiming that “any acknowledgment of abuse will drive African Americans from sorely needed medical care. However, a steady course of lies and exploitation has already done this” (Washington, 2006, pp. 386-387). This history and profound lack of trust may be one reason why African Americans may prefer intensive life-sustaining treatment near the end of life and believe that advance care planning and hospice may deny them wanted services (Johnson et al., 2008, 2011; Lepore et al., 2011; West and Hollis, 2012).

Some believe that poor physician communication skills contribute to this lack of trust (Gordon et al., 2006). In a study of physician-patient relationships, however, the issue on which African American and white respondents were in closest agreement was whether they had complete trust in their physician; African American respondents rated all other measures of relationship quality significantly lower compared with white respondents (Smith et al., 2007).

Hispanics/Latinos

Compared with other minority populations, less research has been done among Hispanics/Latinos on end-of-life preferences and decision making. The available studies suggest, however, that they follow the general pattern seen among cultural and ethnic minority populations as previously described (Carr, 2012a). Extent of knowledge about and attitudes toward advance directives are strong predictors of whether such directives are completed among both Hispanics and whites, and disparities in rates of completion may be due to differences in these factors (Ko and Lee, 2013). Greater acculturation was found to increase the likelihood of having an advance directive among older Latinos (Kelley et al., 2010).

Interviews with 147 Latinos aged 60 and older from Los Angeles–area senior centers found that most (84 percent) would prefer care focused on relieving pain and discomfort if they became seriously ill, yet nearly half (47 percent) had never discussed these preferences with either their family or their physicians (Kelley et al., 2010). Interviewees expressed a strong preference for family involvement in decision making about end-of-life care, whether or not they were incapacitated. In another study, 71 percent of hospitalized Latinos had not had a discussion about advance directives with clinical personnel (Fischer et al., 2012). Latinos who had had such a discussion were just as likely as any other population group members to have an advance directive on file, suggesting that the primary barrier to overcome is the low rate of such discussions.

System Factors in Decision Making

Mack and colleagues (2010a, p. 1537) conclude that “wider issues within the health care system … could explain the major disparity we identified… . White patients may have greater continuity of providers and sites of care, with the confirmation of [do-not-resuscitate] orders and documentation of preferences, for example, at every encounter. Alternatively, racial bias on the part of health care providers about patient preferences could have a role.”

Several potential system barriers to advance care planning and completion of advance directives have been identified. For example, doctors' belief that African American patients “are more likely to prefer intensive, life-sustaining treatment” (Barnato et al., 2011, p. 1663) may lead to an overestimation of an African American individual's preference for such treatment. This may be one reason black patients tend to receive life-extending measures even when they have stated a preference for symptom-directed care (Mack et al., 2010a) and why the hospital care they receive is more likely to involve intensive services (Barnato et al., 2006, 2007).

Some patients may simply need more information about advance directives, the advance care planning process, and hospice and palliative care options (Johnson et al., 2008; Wicher and Meeker, 2012; Zaide et al., 2013). As a practical matter, health care providers need to be sure that the relevant discussions with all patients, regardless of race, ethnicity, language, and health literacy level, are unhurried, culturally appropriate, free of confusing medical terms and concepts, and adequately understood by the patient and family. Physicians can be part of that discussion, but may not in all cases be the most appropriate person to lead a lengthy conversation; bicultural and bilingual patient navigators or other trained laypersons may be helpful in talking to patients and their families about advance care planning. Materials in languages other than English and designed for low-literacy populations may also improve knowledge, understanding, and rates of advance care planning (Fischer et al., 2012).

ELEMENTS OF GOOD COMMUNICATION IN ADVANCE CARE PLANNING

Elements of good communication in advance care planning include open, clear, and respectful communication between clinician and patient; good communication with families and health care agents; and shared decision making and patient-centered care.

Shared Decision Making and Patient-Centered Care

Increasingly, informing and involving patients regarding the decisions about their care is recognized as a standard for good care (Fowler et al., 2013). This evolution in thinking has occurred in recent decades with respect to patient-clinician communication around care decisions broadly and is particularly relevant in the context of advance care planning. “Shared decision making emerged as a compromise in the longstanding debate about the relative role of patient autonomy and provider beneficence in medical decision-making” (Stark and Fins, 2013, p. 13).

In May 2013, an editorial in the British Medical Journal called for an equal-footing partnership between patients and doctors. The editorial also acknowledged that “achieving such a partnership is a challenge. Years of paternalism have left doctors and patients unprepared for a different type of interaction” (Godlee, 2013, p. 1).²⁹

Shared decision making is neither clearly nor consistently defined in the research literature, and more robust research methods are needed to gauge its effects more precisely (Lipkin, 2013). Nonetheless, it clearly shares characteristics and a development path with the notion of patient-centered care. Indeed, shared decision making is one aspect of patient-centeredness, an essential component of quality care. Shared decision making encompasses

• eliciting and understanding the patient's perspective;
• understanding the patient's psychosocial and emotional context;
• developing a shared understanding of the clinical problem and its appropriate treatment, given the patient's goals, preferences, and values; and
• empowering patients, which is achieved through active involvement of patients in decision making (LeBlanc and Tulsky, in press).

For patients with advanced serious illnesses, shared decision making is intended to create a context in which future decisions can be made that remain true to patients' preferences. This approach eschews the idea of specific, checkbox-style advance directives, and emphasizes participation by patients and, importantly, their families, as well as their health care agents (who may be family members), whose thoughtful selection is strongly endorsed by current practice. According to Gillick (2013, p. 575), “For frail elders and patients with advanced illness, many of whom have multiple chronic diseases, patient-centered care is impossible without caregiver involvement … [and] … the critical role of caregivers deserves considerably more attention from clinicians.”

A narrative synthesis of some 37 articles on shared decision making in palliative care identifies several important themes (Bélanger et al., 2010). Although patients prefer shared decision making (preferred by 40-73 percent of patients surveyed in five studies) and it is important to them, they often are not afforded the chance to participate. In addition, the effects of participation on patient outcomes (anxiety and depression, patient satisfaction, and life expectancy) are not yet clear, and both barriers to and facilitators of shared decision making have been identified. Barriers include patients' and families' unrealistic expectations of treatment; the way options are framed for patients; delaying decisions to follow predetermined patterns of care; and providing information too gradually so that when a decision is needed all the information is not in hand. Facilitators include clinicians providing sufficient, realistic information; presenting choices; and using tools to aid patients in decision making.

How Patients Make Decisions

Advance care planning is founded on the expectation that people, once presented with evidence and facts, will make rational choices based on well-established views and preferences (Swindell et al., 2011). The growing field of behavioral economics is challenging both the notion of “rational choice” and the presence of “well-established views.” Clinicians assisting patients benefit from understanding of biases and “rules of thumb” by which patients make decisions (Swindell et al., 2010). Examples of these decisionmaking methods as they might emerge in end-of-life situations include

• being unduly influenced by a memorable event (such as news reports of the extremely rare cases in which someone in a coma for many years “miraculously” returns to consciousness);
• believing that some exceptional factor will prevent a patient's disease from following its usual course;
• being influenced by unrelated past occurrences (such as a relative's successful recovery from a serious disease or difficult, painful death); and
• preferring inaction to avoid harm (such as declining opioid drugs early in the illness so that “they will work when I need them”), even though this inaction may cause greater harm than action.

Such biases and heuristics can unintentionally thwart what patients themselves see as their best interest and goals (Swindell et al., 2010). Clinicians who understand the ways in which patients' decision making is not always rational can help patients reflect on their biases and to see whether doing so changes their expressed preferences (Halpern, 2012a; Swindell et al., 2011).

Insights into the psychology of human decision making can be used “to develop, test, and implement scalable interventions that improve the quality of the health decisions made by patients, family members, and providers” (Halpern, 2012b, p. 2789). “Choice architecture” takes into account the ways “choices are presented and the environment in which decisions are made,” adjusting them so that better decisions result (Halpern, 2012b, p. 2789).

Gaps between people's intentions and their behavior are a prominent theme in the end-of-life field. A prime example is the gap between people believing in the importance of advance directives and discussions about end-of-life wishes and their taking action in accordance with that belief (CHCF, 2012; The Conversation Project, 2013). Certainly patients have been shown to vary a great deal in the extent to which they want to be involved in decisions about their end-of-life care, and it may be possible to encourage and support good decision making without relying on unrealistic expectations about patient engagement.

Choice architecture employs a number of key strategies designed to improve the decision environment, including use of defaults and precommitment (Nease et al., 2013). The precommitment approach takes into account that most people place a higher value on present or imminent events than on events that will occur in the future. Advance care planning is an example of an action that has fairly steep immediate costs (contemplation of one's mortality and the possibility of being unable to make decisions) and benefits that may appear only theoretical. The younger and healthier the person is, the more theoretical those benefits may seem. Default or “opt-out” choices assign patients a provisional decision; if they want to make a different decision, they can, but must actively do so.³⁰ All default options in the health care system (for example, aggressive care unless stated otherwise) carry biases. Choice architecture seeks to make these biases explicit and, in some cases, encourage changing the default to one that is generally preferred by patients and clinicians. By doing so, biases that currently drive decisions may be undone, and patient choice may be enhanced. According to Halpern and colleagues (2013, p. 412), “A hallmark of defaults is that they lead gently, without restricting any options.” A randomized study of patients with incurable lung cancer found that when the patients were presented with an advance directive in which the default was palliative care, they were significantly more likely to elect that option than were patients given a standard advance directive or one that defaulted to life-extending treatment (Halpern, 2012b; Halpern et al., 2013). In studies in which a hypothetical advance directive used forgoing life-sustaining interventions as the default, many more study participants indicated that this was their preference than was the case if they had to actively choose that option (Kressel and Chapman, 2007; Kressel et al., 2007).

The important implication of the research by Kressel and colleagues is that “people might not have well-formulated, strongly held views on what forms of care at the end of life will best promote their values” (Halpern et al., 2013, p. 409). Rather than reflecting deeply ingrained preferences, their responses to advance directive document choices may be constructed at the time they are asked to provide them, similar to what has been observed with respect to other health care choices (Halpern et al., 2007). This hypothesis was tested with 132 patients having incurable lung disease and no prior directive (Halpern et al., 2013). Patients were randomly assigned to be presented with one of three advance directives that differed only in their embedded default options. While most of the patients chose what the authors called comfort-oriented care, the proportion making that choice was much higher in the group receiving the “comfort default” directive. When, subsequently, the study design was explained to patients along with the data showing how defaults had affected the choices of the patient groups, only 2.1 percent of participants reconsidered their selections, and no patients revised their original choices. This result suggests that changes to the way advance directives are structured that make it simple for patients to choose the kind of care most patients prefer (always with the option to choose otherwise) might “provide a novel way to improve end-of-life care for large populations of seriously ill patients” (Halpern et al., 2013, p. 414).

Decision Aids

Decision aids have been developed to guide discussion, support patients, and make discussion of difficult issues easier.³¹ Recognizing that patients nearing the end of life are likely to be in a state of decline, the designers of these aids generally attempt to make their completion as low burden as possible. Many of these tools have been tested and used in the palliative care setting or with cancer patients, and many of them apply to a single decision, such as whether to place a feeding tube in a cognitively impaired patient.

Even an apparently simple open-ended question such as “What is your understanding of your illness?”—certainly fundamental to a discussion of choices—can have significant clinical utility. A study of patient responses to this question found substantial differences among patient groups: 77 percent of patients with cancer could name or describe their condition, sometimes using precise biomedical terms; 39 percent of patients with congestive heart failure and 41 percent with chronic obstructive pulmonary disease could do so; and some patients (particularly those with limited education) had little knowledge or understanding of their illness (Morris et al., 2012). Patients' responses to this question may, therefore, signal the opportunity for clinicians to provide more information about the illness, discuss how it may affect the patients' lives, and describe its likely course, as well as reveal whether patients have unmet emotional needs.

Decision aids are of three general types: those used in face-to-face encounters; those designed for use outside clinical encounters (take-home materials, for example); and those that use some intervening medium, such as telephone or video (Elwyn et al., 2010). Results of randomized trials of video decision aids, reported in Table 3-5, show that across the board, participants were comfortable with the decision aids and found them useful. According to the authors of one of these studies, “Physicians often underestimate the emotional resilience of patients and their desire to be involved in this decision-making process” (El-Jawahri et al., 2010, p. 309).

TABLE 3-5

Effects of Video Materials on Health Care Decisions Among Selected Audiences.

A research team at the forefront of developing and evaluating decision aids defines them as follows:

Decision support interventions help people think about choices they face: they describe where and why choice exists; they provide information about options, including, where reasonable, the option of taking no action. These interventions help people to deliberate, independently or in collaboration with others, about options, by considering relevant attributes; they support people to forecast how they might feel about short, intermediate and long-term outcomes which have relevant consequences, in ways which help the process of constructing preferences and eventual decision making, appropriate to their individual situation. (Elwyn et al., 2010, p. 705)

Video is not the only effective medium for decision aids. In another recent study involving 120 patients with metastatic cancer who were no longer receiving curative therapy (55 intervention patients, 65 control patients), the intervention group received a pamphlet (“Living with Advanced Cancer”) and a discussion with a psychologist about preferences and values (Stein et al., 2013). Those receiving the intervention had do-not-resuscitate orders placed earlier and were less likely to die in the hospital than patients in the control group. Previous research had indicated that providing the pamphlet alone caused patients distress; with the addition of the discussion with a psychologist, no negative impact on patients or caregivers was found.

The timing of the use of decision aids also is important. By the time a patient is admitted to a hospital palliative care unit, for example, many of the most significant decisions may have been made, or patients may be too sick or preoccupied to participate (Matlock et al., 2011).

MODEL ADVANCE CARE PLANNING INITIATIVES

The National Quality Forum's National Framework and Preferred Practices for Palliative and Hospice Care Quality includes seven preferred practices related to advance care planning (NQF, 2006). They reflect many of the issues raised in this chapter, and many build on positive experiences with model advance care planning initiatives that have improved the effectiveness of the process or its reach in the population. The seven practices are as follows:

• Document the designated surrogate/decision maker in accordance with state law for every patient in primary, acute, and long-term care and in palliative and hospice care.
• Document the patient/surrogate preferences for goals of care, treatment options, and setting of care at first assessment and at frequent intervals as conditions change.
• Convert the patient treatment goals into medical orders, and ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services [EMS], and hospital care, through a program such as the Physician Orders for Life-Sustaining Treatment (POLST) program.
• Make advance directives and surrogacy designations available across care settings, while protecting patient privacy and adherence to Health Insurance Portability and Accountability Act (HIPAA) of 1996 regulations, for example, by using Internet-based registries or electronic personal health records.
• Develop health care and community collaborations to promote advance care planning and the completion of advance directives for all individuals, for example, the Respecting Choices and Community Conversations on Compassionate Care programs.
• Establish or have access to ethics committees or ethics consultation across care settings to address ethical conflicts at the end of life.
• For minors with decision-making capacity, document the children's views and preferences for medical care, including assent for treatment, and give them appropriate weight in decision making. Make appropriate professional staff members available to both the child and the adult decision maker for consultation and intervention when the child's wishes differ from those of the adult decision maker (NQF, 2006, pp. 42-45).

These standards reflect several innovations in advance care planning that have occurred since Approaching Death (IOM, 1997) was published. These innovations overcome some of the difficulties experienced with conventional advance directives related to timing, relevance, lack of support, and unavailability when needed.

Physician Orders for Life-Sustaining Treatment

The POLST paradigm is an approach to advance care planning designed to ensure that seriously ill or frail patients can choose the treatments they want or do not want and that their wishes are documented and will be honored in an emergency (National POLST, 2012a). POLST is a clinical process designed to facilitate communication between health care professionals and patients, their families, their health care agents, or their designated surrogates. The process encourages shared, informed medical decision making. The result is a set of portable medical orders, POLST forms (see Annex 3-2), that respects the patient's goals for care with regard to the use of cardiopulmonary resuscitation; artificially administered nutrition; and other medical interventions, such as intubation and future hospitalization (Bomba et al., 2012; National POLST, 2012a). Medical intervention options generally are described as “comfort measures only,” “limited additional interventions,” and “full treatment” and align with the intensity of the desired interventions. “Comfort measures only” indicates that the primary goal for care is maximizing comfort. If comfort needs cannot be met in the patient's location, the patient is transported to a clinical care setting where those needs can be met. “Comfort measures” are medical care and treatment provided with the primary goal of relieving pain and other symptoms and reducing suffering, and may include offering food and fluids by mouth; turning the patient in bed; providing wound care; and providing oxygen, suctioning, and other manual treatment of airway obstruction for comfort. “Limited additional interventions” includes comfort measures plus some medical interventions, such as administration of antibiotics and intravenous fluids. “Full treatment” includes measures provided in the other two categories, as well as use of additional medical interventions, such as intubation or mechanical ventilation.³²

These medical orders support the person's preferences with respect to treatment, preferred site for receiving care, and death, and can be reviewed and revised as needed (Bomba et al., 2012; National POLST, 2012a). They are intended to stay with patients near the end of life as they are transferred from home to hospital or any other type of care facility and to be in force wherever patients may be. POLST are followed in all care settings and by all health care professionals, including emergency medical services personnel, who in an emergency, cannot interpret a living will or take orders from a health care agent (Bomba et al., 2012; National POLST, 2012b,c).

POLST are not intended for everyone; they are for people with serious illnesses or frailty whose health care professionals would not be surprised if they died within the next year, based on their current health status and prognosis. POLST also are appropriate for patients who reside in a long-term care facility or receive long-term services at home as a result of frailty, and for persons of advanced age who want to avoid or receive any or all life-sustaining treatment. Among vulnerable populations, including persons with disabilities, POLST are intended only for seriously ill or frail patients facing end of life, not the entire population (Bomba et al., 2012; National POLST, 2012a).

The POLST process begins with the clinician's preparing for the discussion by first reviewing the patient's current health status and prognosis to ensure that POLST are appropriate for that patient. The second step entails retrieving and reviewing completed advance directives and prior do-not-resuscitate and/or POLST forms; the third, determining the patient's capacity to make POLST decisions; and the fourth, educating the decision maker about POLST. A conversation or series of conversations between the patient and trained clinicians helps define the patient's values, beliefs, and goals for care that will drive the choice of interventions. The discussion can occur in all clinical care settings, including the physician's office, the long-term care facility, the hospital, or the patient's home. If the patient lacks the capacity to make medical decisions outlined on the POLST form, discussion occurs with the health care agent or the appropriate surrogate, identified under state law. The clinician reviews possible treatment options on the entire POLST form and ensures shared, informed medical decision making. The POLST form is signed by the physician, because it represents a set of medical orders; in some states, nurse practitioners are authorized to sign the form. The conversation should also be documented in the patient's medical record (Bomba et al., 2012).

The POLST form typically is printed in a bright, neon color so it is difficult to overlook on the patient's home refrigerator or in an inches-thick medical chart. It is written in plain language, avoiding both medical and legal jargon, and intended to be based on conversations among the clinician, the patient, and the health care agent (Bomba et al., 2012; National POLST, 2012d).

The physician (or nurse practitioner, if state scope-of-practice regulations allow) should review the POLST form periodically as required by law, and also if

• the patient is transferred from one care setting or care level to another,
• there is a substantial change in the patient's health status (for better or worse), or
• the patient or other decision maker changes his or her mind about treatment.

The advantages of POLST forms are such that their use is supported by the American Hospital Association, AARP, the National Hospice and Palliative Care Organization, and other groups. At the community level, a project sponsored by Excellus BlueCross and BlueShield in Upstate New York has worked to educate the community about that state's POLST program (called Medical Orders for Life-Sustaining Treatment [MOLST]) (Compassion and Support, 2014a). The project has engaged employers, insured members, and clinicians in efforts to increase advance care planning and adherence to patients' informed preferences (see also Chapter 6).

The POLST form is neither an advance directive nor a replacement for advance directives (Bomba et al., 2012; National POLST, 2012e). Both advance directives and the POLST form are helpful advance care planning documents for communicating patient wishes when appropriately used. As discussed in this chapter, one of the principal problems with the “living will” type of advance directive is that it may have been completed when a person was in relatively good health. At that point, it is almost impossible for people to predict the kind of care they would want in some future, more compromised state. Another problem is that clinicians often are unaware of the existence of the advance directive and do not always follow it if they are, if only because they believe patients' former wishes are not relevant in their current situation. Finally, advance directives often do not accompany patients as they transfer between care settings. The POLST form is designed to overcome these limitations. Salient features of the POLST form and the ways in which it differs from advance directives are summarized in Table 3-6.

TABLE 3-6

Differences Between POLST and Advance Directives.

Like advance directives, POLST forms allow patients to choose a range of intensities of care, from comfort measures only to full treatment, and to indicate whether they want emergency medical services personnel to attempt resuscitation. In one study of more than 700 patients with POLST in place, 42 percent specified comfort measures only, 47 percent specified limited interventions, and 12 percent specified full treatment (Hickman et al., 2010).

Effects of POLST on Patient Care

The developers of the POLST paradigm have conducted a number of studies to document its effects. These studies have yielded the following findings:

• The treatment preferences of nursing home residents without a POLST form were less likely to be reflected in medical orders, and their preferences for treatment other than cardiopulmonary resuscitation were less likely to be recorded (Hickman et al., 2010).
• Nursing home residents with POLST comfort measures only orders were less likely to receive life-prolonging treatments than those with POLST limited treatment or full treatment orders and those with traditional do-not-resuscitate and traditional full-code orders (Hickman et al., 2010).
• Having a POLST form made no difference in the amount of symptom care patients received (Hickman et al., 2010).
• Treatments provided to nursing home residents were highly consistent with POLST orders for resuscitation (98 percent), medical interventions including hospitalization (91 percent), and antibiotic administration (93 percent), but less consistent with orders regarding use of feeding tubes (64 percent) (Hickman et al., 2011).
• Patients whose POLST orders specified higher levels of medical treatment received that treatment (Hammes et al., 2012; Hickman et al., 2011).
• Care diverged from that specified in POLST orders only rarely (Hammes et al., 2012).
• One-half to three-quarters of patients with a POLST form specifying no resuscitation attempt nevertheless had orders for limited additional interventions or full treatment, which can include other medical interventions or life-sustaining treatments (Fromme et al., 2012; Hickman et al., 2009).

New York authorized the statewide use of MOLST in all care settings in 2008 after a successful 3-year community pilot was conducted to ensure that emergency medical services personnel could read and follow do-not-resuscitate and do-not-intubate orders on the MOLST form (Compassion and Support, 2008). Standardized professional training and community education materials, policies and procedures, and a quality assurance program were developed. Community-wide quality and implementation data were collected from emergency medical services, hospitals, nursing homes, hospices, assisted living facilities, enriched housing facilities, and Program of All-inclusive Care for the Elderly (PACE) programs in two Upstate New York counties (Caprio and Gillespie, 2008; Compassion and Support, undated-b).

California authorized the use of POLST in 2009, and efforts have been made to encourage facilities in the state, including nursing homes, to adopt their use. Among 283 respondents to a survey of state nursing homes, 69 percent reported that they had admitted a resident who had a POLST form (Wenger et al., 2012). Overall, 54 percent of nursing home residents had a POLST form. Fewer than 10 percent of nursing homes reported any difficulties in following the POLST orders or having emergency personnel follow them; however, problems that reportedly did arise with more frequency included

• difficulty in retrieving original POLST forms from other facilities (62 percent of respondents),
• difficulty in getting physicians to complete (38 percent) and sign (34 percent) the forms,
• family disagreement with the content of the forms (28 percent), and
• difficulty in interpreting POLST orders to make treatment decisions (21 percent).

Oregon researchers conducted a small survey of emergency medical services personnel to learn the impact of POLST on their work. They found that POLST orders affected both treatment and decisions regarding whether to transport patients to a hospital (Schmidt et al., 2013). Another recent study of 58,000 decedents in Oregon found that nearly 31 percent had POLST forms entered in Oregon's POLST registry. Among those whose completed POLST forms stated a preference for comfort measures only (“Patient prefers no transfer to hospital for life-sustaining treatments. Transfer if comfort needs cannot be met in current location.”), that preference was highly likely to be honored (Fromme et al., 2014, p. 2). Only 6.4 percent of these decedents died in a hospital, compared with 34.2 percent of decedents without a POLST form in the registry. This suggests that such forms can be effective in limiting unwanted life-sustaining treatment.

New POLST programs in many states have carried out substantial community engagement efforts with diverse audiences. These efforts are intended to provide education about the program, especially how the POLST form differs from conventional advance directives; to obtain consumer and professional input; and to build momentum for statewide adoption (examples include the efforts of New York, described at http://www.compassionandsupport.org, and those of the Massachusetts Department of Public Health [2011]).

Challenges to POLST

Although many states have or are working to implement POLST, opposition to the paradigm has emerged in some communities, in some cases as a result of confusion between POLST and advance directives. For example, disability rights advocates successfully lobbied against Connecticut's effort to enact POLST legislation in spring 2013 because they felt POLST limited rather than expanded patient options (Hargrave, 2013). Some Catholic theologians and organizations, including the Catholic Medical Association, have also raised objections to POLST (Brugger et al., 2013; Nienstedt et al., 2013), while others have endorsed them when used properly (Catholic Bishops of New York State, 2011). In a letter to the committee, the Catholic Health Association, which takes the view that portable medical documents such as POLST forms can be useful, emphasized the importance of “attending to some of the identified shortcomings and risks of these documents” (Rodgers and Picchi, 2013, p. 2). Their concerns related to POLST include the following:

• The definition of whom POLST are for—The core idea is that POLST are for people who are seriously ill and near the end of life, but deviations from that notion have been seen.³³
• Relevant training of health professionals—People who work with POLST, especially emergency personnel and staff of long-term care facilities, need training in the POLST process; effective communications regarding its use; and other skills, such as an understanding of the applicability of a POLST form in a given situation so they do not deny treatment for remediable problems that are not imminently life-threatening.
• Potential lack of meaningful conversation—Clinicians may simply check off the boxes on the POLST form without having the necessary conversations with patients and health care agents. In New York State, an eight-step protocol has been developed to guide clinician-patient/family interactions so as to ensure thoughtful MOLST discussions (Bomba et al., 2012).
• Significance of the clinician's signature—Physicians or other clinicians sign the form, but attest only that the orders are to the best of their knowledge consistent with the patient's current medical condition and preferences, not that they participated in the discussion of the orders. But the POLST form cannot be viewed as “simply another form to be completed by the health care professional, separated from the context of the advance care planning that is essential to the POLST paradigm” (Rodgers and Picchi, 2013, p. 2), because physicians are accountable for the medical orders in the form when they sign it.
• Voluntary nature of POLST—Perhaps especially in long-term care facilities and other institutional settings, the fundamental voluntary nature of POLST, in whole or in part, must be safeguarded, and completion of a POLST form should not be a requirement.

Electronic Health Records

Electronic storage of advance directives, statements of wishes, health care proxies, or other relevant materials—either in the patient's electronic health record or an external database—holds promise for solving some current problems with these documents. An example is described in Box 3-3.

BOX 3-3

New York State's eMOLST. New York State's eMOLST program is an example of well-coordinated electronic documentation of advance care choices. eMOLST is a secure Web-based application that clinicians can use with patients. The application's standardized (more...)

A 2013 telephone survey of New York nursing homes found that almost 58 percent had implemented eMOLST, while 61 percent indicated interest in the program. A similar survey of hospices in the state found that 38 percent had implemented eMOLST, while 44 percent were interested. A similar survey of hospitals is under way.³⁴

In theory, electronic systems should facilitate finding advance planning documents when critical decisions must be made. If records use a standard template, it may be easier to locate the relevant information to determine whether current care preferences are reflected in the medical record (Yung et al., 2010). According to Wilson and colleagues (2013, p. 1093), “Standardization is a fundamental prerequisite for efficient production and effective delivery of services,” and electronic systems can—although they do not always—achieve standardization. Another potential advantage of having advance directives in electronic health records is that they can remind clinicians to inquire whether patients' care preferences have changed and whether they wish to update the identity and contact information for their health care agent. For example, Partners Health System has pioneered an innovative and complete electronic health record module that supports appropriate discussion and documentation of end-of-life planning (Block, 2013). The module includes areas for documenting individuals' preferences for receiving information about their illness, their understanding of their illness, and their goals and fears. Some of the other diverse and innovative ways in which clinicians and institutions are using electronic means to support advance care planning are described in Table 3-7.

TABLE 3-7

Selected Examples of the Use of Electronic Health Records and Other Technologies to Support End-of-Life Planning.

Currently, however, there are some gaps in practice. Not all advance directive registries are linked to patients' electronic health records. In addition, while electronic health records have increased the documentation of advance directives, they have resulted in “an increase in inaccurate advance directive documentation from labeling errors made in transfer of information to the [electronic health record],” and systems of advance care planning and electronic health records have not yet been well coordinated (Bose-Brill and Pressler, 2012, p. 286). For example, EpicCare is one of the principal electronic health record systems adopted by U.S. health care providers. A study of the availability of advance care planning documents (including living wills, POLST forms, information about health care agents, and do-not-resuscitate orders) was conducted among active patients in EpicCare's ambulatory care electronic health record system (Wilson et al., 2013). The study found that, while 51 percent of those aged 65 and older had such a document, only about one-third of their records included a scanned document—the only type that includes signatures, which are required to make them legally valid. Minority patients were less likely to have a scanned document. Additional problems included a lack of standardization in where in the record advance care planning information is recorded, thwarting easy retrieval, and a time lag between completion of advance care planning documents and their appearance in the electronic record.

Under the Health Information Technology for Economic and Clinical Health (HITECH) Act,³⁵ Medicare and Medicaid have provided significant financial incentives for hospitals and physicians to engage in “meaningful use” of certified electronic health record technology (CMS, 2014). To receive these payments, physicians and hospitals must show they are “meaningfully using” electronic records to achieve certain specific objectives established by the Centers for Medicare & Medicaid Services. Thus far, the data standards related to advance care planning have been minimal, applying only to hospital patients aged 65 and older, but the evolution of meaningful use offers possibilities for expansion in various core areas, such as patient education and patient engagement. As noted earlier in this chapter, the ACA's meaningful use provisions for electronic health records do not require, and the major commercial electronic health records do not provide for, robust documentation of advance care planning, including advance directives, POLST, or information about designation of and contact information for a health care agent. Meaningful use stage 2 includes as an objective only to “record whether a patient 65 years old or older has an advance directive” (CMS, 2012c, p. 1); further, this is not considered a “core” objective, and it is relevant only for eligible hospitals and critical access hospitals, not for eligible professionals (CMS, 2012d,e). Final recommendations from the Health Information Technology Policy Committee for meaningful use stage 3 maintained this stage 2 objective; however, the policy committee is now recommending that it be a core objective for eligible hospitals and a menu objective for eligible professionals (HHS, 2014). (See also the discussion of research needs related to electronic health records in Chapter 5, as well as that chapter's recommendation.)

A PROPOSED LIFE CYCLE MODEL OF ADVANCE CARE PLANNING

As reflected in the standards of the National Framework and Preferred Practices for Palliative and Hospice Care Quality (NQF, 2006), discussed earlier, good advance care planning is not a one-time event, but should occur at appropriate decision points throughout life, roughly as detailed below (Benson and Aldrich, 2012; Bomba, 2005). The following life cycle model of advance care planning is based on these standards and practices, findings from the extant literature reviewed in this chapter, and the committee's expertise and expert judgment. Considering the aspects of advance care planning throughout the life cycle continuum normalizes the process and aims to avoid the emotional burden sometimes experienced by patients, families, and loved ones who have not adequately prepared for making end-of-life care decisions. This proposed model has implications for quality improvement programs, clinician training, public and patient education, and payment systems.

RESEARCH NEEDS

A large body of research exists on advance directives—whether they have been created, whether they have been followed, and what impact they have on important outcomes of care. This literature is a principal reason that the usefulness of simple checkbox-style documents has come into question. Much less research has been conducted on the effectiveness of more thorough advance care planning conducted over time and tailored to immediate decisions as needed, as in the life cycle model described above. Also needed is further investigation into how advances in thinking about shared decision making and behavioral economics can be applied specifically in end-of-life situations. A focus on preparing people for in-the-moment decision making, rather than specifying exact treatment preferences, holds promise as well. With respect to the POLST paradigm and other community-wide efforts to encourage advance care planning, the research challenge is one of developing and validating best practices to ensure the integrity of these program models as they are diffused to other settings. Likewise, investigations should be initiated to determine the most effective ways in which electronic health records can support advance care planning.

Decision-making theory points to the various means used by individuals to arrive at important decisions; the stages of change theory described in this chapter is one such model. A better understanding of patient and family decision-making styles might help clinicians work with their patients more effectively and lead to decisions most relevant and appropriate to each patient. In addition, more information is needed on the way the care system respects, responds to, and sometimes shapes the decisions of patients and whether or in what ways this is affected by race, gender, income, literacy, insurance status, or other factors. Findings from such research should be useful in improving communication between clinicians and the full range of patients they serve. This type of research might lead to the development of appropriate decision supports as well.

Specific research needs include investigation into the effectiveness of strategies for advance care planning (versus advance directives) and their effects on achieving concordance with patients' informed preferences and quality of care. Specific needs relate also to

• the development of guidelines for pediatric and adolescent advance care planning;
• continued research toward understanding children's involvement in end-of-life decision making and comparative effectiveness studies of different approaches to decision support and communication;
• understanding of racial, ethnic, and cultural differences in advance care planning among nursing home residents;
• best practices and needs for different Asian, Hispanic, and South Asian populations;
• ways to improve shared decision making;
• the significance of and strategies for implementing choice architecture in advance care planning programs; and
• the most effective and cost-effective designs for financial incentives and reimbursement for clinicians to participate in advance care planning, recognizing that doing so takes time and may require repeated consultations.

FINDINGS, CONCLUSIONS, AND RECOMMENDATION

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ANNEX 3-1: ADVANCE CARE PLANNING IN THE CONTEXT OF COMMON SERIOUS CONDITIONS

For each of the four common serious conditions described in this appendix, all of which are leading causes of death in the United States, the failure to provide palliative care—important components of which are the setting of treatment goals and effective communication among patient, family, and clinicians—is a major shortcoming in the quality of care.

ANNEX 3-2: OREGON PHYSICIAN ORDERS FOR LIFE-SUSTAINING TREATMENT (POLST) FORM

Footnotes

1

These individuals are variously called surrogates, proxies, or agents. A health care agent is an individual designated in an advance directive, while a health care proxy is any designated substitute decision maker, including a guardian or conservator. A surrogate is a person who, by default, becomes the decision maker for an individual who has no appointed proxy (HHS, 2008). In this report, the term “health care agent” is generally used. The form that names the agent is often called a durable power of attorney for health care.

2

Natural Death Act, Ch. 1439, 1976 Cal. Stat. 6478 (enacting Cal. Health & Safety Code § 7188 (repealed 2000)).

3

The Patient Self-Determination Act, Omnibus Budget Reconciliation Act of 1990, Public Law 101-508 §§ 4206 and 4751, 104 Stat. 1388-155 and 1388-204 (1991).

4

See https://www​.compassionandsupport​.org/index​.php/for_patients_families​/advance_care_planning​/community_conversations (accessed December 16, 2014).

5

See https://www​.practicalbioethics​.org/resources​/caring-conversations (accessed December 16, 2014).

6

See http://www​.americanbar​.org/groups/law_aging.html (accessed December 16, 2014).

7

See http://www​.nhdd.org/public-resources (accessed December 16, 2014).

8

See http:​//theconversationproject.org (accessed December 16, 2014).

9

The other countries in this review were Brazil, China, Germany, India, Israel, Japan, Kenya, Netherlands, Taiwan, Turkey, and the United Kingdom. Usage of advance directives is low in other countries, even in those whose legal systems allow them (Blank, 2011).

10

In the Orleans and Cassidy (2011) review, the stages of change are specified as precontemplation (not thinking about participating in the activity yet), contemplation (thinking about participating in the next 6 months), preparation (planning to complete the activity in the next 30 days), action (participated in the activity within the past 6 months), and maintenance (participated in the activity more than 6 months ago).

11

Ostensibly, these laws provide the maximum feasible protection of the wishes of the incapacitated person and “the fundamental right to make health care decisions for oneself” (Kohn and Blumenthal, 2008, p. 9) (as expressed in the laws of Illinois, Louisiana, and Utah, for example).

12

By contrast, a survey involving more than 10,000 physicians found that more than half (55 percent) would not consider halting life-sustaining therapy because the family demanded it; for 29 percent, that decision would depend on circumstances (Kane, 2010).

13

Advance care planning is defined in this study as having one or more of the following: a living will, a power of attorney for health care, or life support instructions (Ganti et al., 2007). No distinction is drawn between completion of such a document with and without comprehensive discussion with the physician.

14

Of those receiving the advance care planning intervention, 10 percent of patients' wishes were unknown; 3 percent of patients' wishes were known but not followed.

15

Complicated grief is long-lasting and shares elements of both depression and posttraumatic stress disorder. For a full description, see http://www​.health.harvard​.edu/fhg/updates/Complicated-grief​.shtml (accessed December 16, 2014).

16

These findings were adjusted to take into account potential confounders such as advance directives and advance care planning.

17

The term “child” here encompasses adolescents.

18

See http://www​.agingwithdignity​.org/five-wishes.php (accessed December 16, 2014).

19

They are the FACE Intervention (Lyon et al., 2009), the Footprints Model (Toce and Collins, 2003), and Respecting Choices (Hammes et al., 2005).

20

In this study of 8,232 people over age 50 who died while enrolled in the Health and Retirement Study between 1995 and 2010, disability was defined as needing help with at least one of the following activities of daily living: dressing, bathing, eating, getting in or out of bed, walking across the room, and using the toilet.

21

An intriguing recent report found in four analyses that saving money, in itself, is a buffer against anxiety about death by providing a sense of control over one's fate and protecting people from existential fears (Zaleskiewicz et al., 2013).

22

Sessums and colleagues (2011) recommend three capacity-assessing instruments suitable for use in a physician office visit: the Aid to Capacity Evaluation (ACE), the Hopkins Competency Assessment Test (HCAT), and Understanding Treatment Disclosure (UTD). These instruments have robust likelihood ratios (sensitivity/specificity) and moderate to strong levels of evidence.

23

Defined as “agreeing or agreeing strongly with both of the two statements: (1) the Bible is God's word and everything happened or will happen exactly as it says and (2) the Bible is the answer to all important human problems” (Sharp et al., 2012, p. 283).

24

The terms used to describe population groups in this section vary and are generally those used by the authors cited.

25

Previous research indicated that when physicians talked to patients about advance directives, they spent two-thirds of the time talking; discussed attitudes toward uncertainty only 55 percent of the time; and asked about patients' values, goals, and reasons for treatment preferences 34 percent of the time (Tulsky et al., 1998).

26

This systematic review of English-language research papers was conducted by investigators in Japan, but they note that most of the research they found reported on experiences in Western countries.

27

Most of these 270 patients had at least a 6-month relationship with their oncologist.

28

In this study, audiotapes of 51 family conferences, involving 214 family members and led by 36 different physicians, were made and analyzed. On average, clinicians spoke more than 70 percent of the time.

29

A number of articles on the topic of shared decision making from the British Medical Journal have been collected at http://www​.bmj.com/specialties​/shared-decision-making (accessed December 16, 2014).

30

An early successful application of “opt-out” decision making was designed to encourage people to participate in an employer-subsidized 401(k) savings plan. Automatically enrolling employees unless they actively opted out “materially increase[d] participation while maintaining a high level of employee satisfaction” (Nease et al., 2013, p. 245).

31

For example, the question “Are you at peace?” may be a sufficient screening question to identify patients for whom fuller spiritual assessment or specialized services are needed (Steinhauser et al., 2006).

32

Each state POLST paradigm program is responsible for developing that state's POLST form; therefore, the forms vary from state to state. Forms from various states are available at http://www​.polst.org​/educational-resources/resource-library (accessed December 16, 2014).

33

For example, Delaware's Division of Public Health asked medical providers to discontinue using the state's MOLST form until it could be revised because the agency determined it was being used for non–terminally ill patients, which is “beyond the legal parameters set forth in regulation 4304” (Delaware Health and Social Services, 2012).

34

Personal communication, P. A. Bomba, Community Conversations on Compassionate Care, 2013.

35

Health Information Technology for Economic and Clinical Health (HITECH) Act, Title XIII of Division A and Title IV of Division B of the American Recovery and Reinvestment Act of 2009 (ARRA), Public Law 111-5, 111th Cong., 1st sess. (February 17, 2009).

36

Heart failure hospitalizations are considered an ambulatory care–sensitive condition by the federal Agency for Healthcare Research and Quality: http://www​.qualitymeasures​.ahrq.gov/content.aspx?id=38562 (accessed December 16, 2014).

37

The study by DesHarnais and colleagues (2007) involved 30 patients with heart failure (42 percent of the study population), as well as 41 patients with terminal cancer diagnoses.

38

In the Temel et al. (2010) study, palliative care specifically included the advance care planning activities of establishing goals of care and assisting with decision making regarding treatment.