Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (2015)

6

Public Education and Engagement

The Institute of Medicine (IOM) report Approaching Death (IOM, 1997) suggests that “a continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to dying patients and families, and the obligations of communities to those approaching death” (IOM, 1997, p. 270). The rationale for this conclusion is that creation of a more supportive environment for people near the end of life and their caregivers and families—one that would ensure that people die free of avoidable distress and “find the peace or meaning that is significant to them”—requires attitudes and actions that can be motivated, strengthened, and sustained through continued public discussion. The committee responsible for that report believed that public officials, professional organizations, religious leaders, and community groups should bear the greatest responsibility for encouraging this discussion and for providing the specific information needed by patients and families faced with advancing illness. The “whole-community model for care at the end of life” presented in the report elaborates on this idea, describing potential public education programs “that aim to improve general awareness, to encourage advance care planning, and to provide specific information at the time of need about resources for physical, emotional, spiritual, and practical caring at the end of life” (IOM, 1997, p. 117).

Likewise, the IOM report When Children Die (IOM, 2003) includes several recommendations concerning better communication about end-of-life issues in ways that encompass but are somewhat broader than the activities of advance care planning. The report calls for information programs and resources to help families advocate for appropriate care for

their children and themselves, and cites as a priority research on methods for improving communication and decision making.

In the years since these reports were issued, the need for culturally appropriate public education and engagement about end-of-life care continues, and it is manifest at several levels. The committee responsible for the present report perceives several fundamental needs:

• at the societal level, to build support for constructive public policy related to the organization and financing of end-of-life care and for institutional and provider practices that promote high-quality, compassionate, sustainable care;
• at the community/family level, to raise public awareness and elevate expectations about care options in the final phase of life, the needs of caregivers, and the hallmarks of high-quality culturally relevant and appropriate care; and
• at the individual level, to motivate and facilitate advance care planning and meaningful conversations with family, other caregivers, and clinicians about values, goals, and preferences for care.

The nation has a long way to go to meet these needs. Not only do most Americans lack knowledge about end-of-life care choices, which they will at some point so urgently need, but also the health community and other leaders have not fully and productively utilized public education and engagement strategies to make that knowledge available in ways that are meaningful and relevant to diverse population groups. Worse, statements of some leaders have misled the public on these issues (see the discussion of “death panels” later in this chapter).

The proportion of the U.S. population that is aged 65 and older has more than tripled over the past century, from 4 percent in 1900 to 14 percent in 2012 (Hobbs and Stoops, 2002; U.S. Census Bureau, 2013). Yet despite this aging of America, many have not thought about the kinds of health care decisions they will face as they age or develop serious chronic conditions. As time and technology progress, those decisions will become increasingly complicated.

In this chapter, the terms “public education” and “public engagement” have slightly different meanings. “Public education” generally refers to one-way communication with audiences through media, print, and online channels, while “public engagement” refers to efforts to involve audience members and may include two-way communication and interactivity. The former is passive; the latter is active and may merge into advocacy.

This chapter begins by providing an overview of the current state of public awareness about end-of-life care. Next is a description of events and activities that have led to a changing climate for discussion of death and

dying and encouraged advance care planning. The chapter then explores considerations relevant to developing public education and engagement campaigns on end-of-life topics. This is followed by discussion of several controversial issues that have dominated recent public dialogue on death and dying. The chapter ends with the committee’s recommendation on public education and engagement.

THE STATE OF PUBLIC KNOWLEDGE ABOUT END-OF-LIFE CARE

In describing a “learning health system,” the IOM suggests that “the success of and innovations in healthcare delivery should depend on direct consumer engagement in the design of healthcare models and their aims” and that “citizen and patient engagement is central to taking advantage of advances in the personalization of care based on genetics, preferences, and circumstances” (IOM, 2011, p. 33). But what is known on consumer thinking on the delivery of care near the end of life and the readiness to engage around this topic? Recent polls provide an overall impression, and the views of individuals who addressed the committee in its three public sessions and the 578 people who submitted comments to the study’s website provide some deeper perspectives (see Appendix C), although the full range of sociocultural perspectives may not be completely represented in public polls or public comments to the committee.

Trends in Fundamental Attitudes

In the 2011 Living Well at the End of Life poll of a national sample of U.S. adults, 86 percent of respondents said they thought end-of-life care should be “a top priority for the health care system in this country” (Regence Foundation and National Journal, 2011a, p. 2). More than 90 percent said hospice care should be a top priority, and once the term “palliative care” was explained, 96 percent said it should be a top priority as well.

A Pew Research Center (2013) survey of a nationally representative sample of nearly 2,000 adults provides recent information about Americans’ attitudes regarding a number of aspects of end-of-life care, updating information from similar surveys conducted in 1990 and 2005. Since 1990, the proportion of adults who believe that “medical staff should do everything possible to save the life of a patient in all circumstances” has doubled. In part, this increase is due to a much smaller percentage who replied “don’t know” to the same question in 2013. However, the percentage who believe “there are at least some circumstances where a patient should be allowed to die” also fell over the period, from 73 to 66 percent.

Nevertheless, many Americans say they would tell their own doctors to stop treatment so they could die:

• if they had an incurable disease and were suffering a great deal of pain (57 percent),
• if they had an incurable disease and were totally dependent on another for care (52 percent), or
• if they had an incurable disease and it were difficult to function in day-to-day life (46 percent).

These percentages have remained about the same since 1990, although at the same time, a growing number of people—35 percent, compared with 28 percent in 1990—say they would tell their doctor to do everything possible to keep them alive even if they were suffering a great deal of pain and there were no possibility of recovery. Again, much of this shift is due to people previously unsure.

On the other hand, 62 percent of those surveyed believe individuals have a moral right to end their own lives if they are suffering great pain with no hope of improvement—a 7 percent increase from 1990. Substantial numbers also believe people have the right to commit suicide if they have an incurable disease (56 percent), when they are ready to die and living has become a burden (38 percent), or when their care is an extremely heavy burden on the family (32 percent). In this survey, the public was equally divided on the question of whether physicians should be allowed to prescribe a lethal drug to assist a person seeking suicide.

Although the majority of black Protestants (61 percent) and Hispanic Catholics (57 percent) would ask their doctors to “do everything possible” to keep them alive even if they were suffering great pain and had no hope of improvement, large numbers of both groups (39 percent and 43 percent, respectively) feel differently or have not decided. This finding underscores the point made in Chapter 3 that clinicians cannot make assumptions about patients’ beliefs and preferences based on race, ethnicity, religion, or culture. They must ask.

Understanding of Care Choices

Basic Terminology

Expecting people to understand what they are reading and hearing about end-of-life care or to have meaningful conversations about the subject presumes a common vocabulary. This report emphasizes the importance of high-quality palliative care, but 78 percent of Americans responding to a 2011 survey did not know what palliative care is (CAPC, 2011), and in a more recent survey, 83 percent said they had not heard of it (CHCF, 2012).

Even medical professionals conflate “palliative care” with “end-of-life care,” when in fact palliative care can be appropriate at any stage of a

serious illness when active steps are needed to reduce pain and symptoms and improve quality of life (CAPC, 2011). Nor do clinicians always correctly distinguish between “palliative care” and “hospice,” the latter being a model for delivering palliative services.

In this report, the committee also repeatedly refers to the importance of family caregivers. When people were asked what term they would use to describe “loved ones who care for [people] at the end of their lives,” however, nearly half of respondents did not have a term for that role, one-quarter said “family,” and one-quarter responded “caregiver” or “caretaker” (Calabrese-Eck, 2013).

In Chapter 3, the committee strongly endorses the need for people to name a health care agent. Because this role has numerous titles in state law and in practice—including, for example, “agent,” “surrogate,” and “health care power of attorney”—confusion is inevitable. When people were asked what term they would use to refer to the “person they designate to make healthcare decisions on their behalf,” 30 percent of respondents did not know what to call such a person, 32 percent said “family,” 15 percent “power of attorney,” 11 percent “beneficiary/executor” (perhaps recognizing this person has legal authority), and 10 percent “caregiver” (Calabrese-Eck, 2013).

Terminology matters when it comes to controversial end-of-life issues as well. While a Gallup survey conducted in May 2013 found that only 51 percent of respondents supported doctors’ helping a terminally ill patient “commit suicide” if requested by the patient, 70 percent supported such a policy—a percentage similar to that found in 1990—when the practice was described as allowing doctors to “end a (terminally ill) patient’s life by some painless means” if requested. Recognizing that the term “assisted suicide” is problematic, advocates for this policy often term it “physician aid in dying”; in Oregon, which was the first state to allow the practice through a 1994 ballot initiative,¹ and elsewhere, it is sometimes called “death with dignity” (Levine, 2014). Gallup’s question using the “painless means” wording also specified that both patient and family requested it, whereas the “assisted suicide” question specified only the patient’s requesting it (Saad, 2013).

In short, the foundation for effective communication is not laid, and “the terminology that the health care system uses and the way information is presented is often not aligned with what consumers use and seek” (C-TAC, 2014, p. 2).

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¹Oregon Death with Dignity Act, OR. REV. STAT. §§ 127.800-127.995 (2006).

Concerns About Care

Americans have two consistent concerns about care near the end of life that are reflected in a number of recent polls—the cost of care and being a burden on their families:

• Asked what would concern them if they or a family member became seriously ill, Americans ranked the potential cost of treatment as their highest concern (overall ranking 8.1 on a 10-point scale) (Regence Foundation and National Journal, 2011a).
• In a 2011 poll, Californians were asked about important concerns at the end of life, and the top concern was making sure the family was not burdened financially by care (67 percent) (CHCF, 2012).
• In the same survey, 60 percent of respondents (68 percent of African American respondents) said it was extremely important to them to make sure their family is not burdened by difficult decisions about their care.

The public’s concerns about costs and impacts on the family are well founded, as discussed in other chapters of this report.

Expression of Individual Preferences

The 2013 Pew survey referenced above found that 37 percent of Americans say they have given a great deal of thought and 35 percent say they have given some thought to their preferences regarding medical treatment near the end of life; among those aged 75 and older, one-quarter have given the issue little or no thought. Among people who say they have given the issue considerable thought, most (88 percent) have captured their preferences either in writing or in conversation with others. Americans who are older, white, and have more education or higher incomes are more likely to have put their wishes in writing. (Chapter 3 reviews this literature in more detail.)

Nevertheless, among Americans aged 65 and older, more report talking with their children about what to do with family belongings (76 percent) than about how to handle their medical care if they can no longer make their own decisions (63 percent) or can no longer live independently (55 percent). Even fewer adult children of older parents say the discussion about medical care decision making has occurred (57 percent) (Pew Research Center, 2009).

If people find the topic of care preferences difficult to discuss with family members, discussion with their health care providers appears to be no easier. Research conducted in the U.S. population in general (not specifically

among those with serious advanced illnesses) has found that most (8 in 10) want their clinician to listen to them and to have the full truth about their diagnosis; yet only 6 in 10 say that their provider listens to them, and fewer than half say their provider asks about their goals and concerns for their health and health care (Alston et al., 2012). And although the cost of health care is of concern to patients with serious illnesses, few physicians (16 percent) report having any education or training regarding financial issues and how to discuss them (Regence Foundation and National Journal, 2011b).

According to Alston and colleagues (2012, p. 7), “Unsurprisingly, 30 percent of people said they ‘very often’ get health information from a source other than their health care provider. The most common sources were their spouse or partner (15 percent), the Internet (9 percent), and a friend or family member who works in health care (6 percent).” Likewise, with respect to palliative and end-of-life care in particular, people said they received most of their information from family members and friends (49 percent) (Regence Foundation and National Journal, 2011a). In this study, only about one-third of respondents said they received such information most often from their doctor or health care provider or the news media, and 45 percent said they received very little or no such information from their physician. When asked how much they trusted the information they received, respondents gave high ratings to information that came from doctors or other health care providers (76 percent) and from family and friends (69 percent). The information that came from the news media received high trust ratings from only 17 percent of respondents.

Surveys indicate that most people (70-80 percent) want a patient experience that includes deep engagement in shared decision making; however, a substantial gap exists between what people want and what they receive. Those who do become more engaged report a better experience (Alston et al., 2012). Written public testimony gathered for this study through an online questionnaire (see Appendix C) indicates the often poor communication patients and families have with clinicians. People feel that explanations are rushed, issues are not explained, choices are not understood, and clinicians do not listen. Good communication, by contrast, is greatly appreciated. The way to establish good communication, one caregiver said, is to “ask patients and families what they want,” which is a message of Chapter 3.

Experts in health care communication believe a combination of three elements—clinician expertise, patient and family goals and concerns, and medical evidence²—is necessary for truly informed health care decisions, and in general, Americans strongly value all three (Alston et al., 2012). What is needed is to mobilize that general support in the specific context

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²Shortcomings in the U.S. population with respect to literacy and health literacy, which are essential to the interpretation of medical evidence, are discussed in Chapter 3.

of advanced illness. Death and dying can be a difficult, emotional issue for both public engagement and private discussion. For most people, until a family member is actually facing a serious illness, interest is just too low, the psychological barriers are too high, and preoccupation with the demands of daily life is a ready excuse not to engage. At least in the short term, that reluctance must be acknowledged and societal means found to help people understand that, in most instances, good information is available when they want it.

Public education and engagement efforts should aim to normalize difficult conversations and help people from diverse communities acquire the information and skills needed to participate meaningfully in those conversations. As a result, more people might obtain the care they want and need as they near the end of life.

THE CHANGING CLIMATE FOR DISCUSSION OF DEATH AND DYING

Events and activities since 1997 have changed the climate for discussions of death and dying, and the topic is not the taboo it was a few decades ago. As more people in the baby boom generation reach age 65—some 10,000 a day until 2030 (Pew Research Center, 2010)—public interest in and acceptance of information on death and dying will likely increase. As previously noted, the Pew Research Center (2013) found that the proportion of surveyed Americans indicating that they have given a great deal of thought to their end-of-life wishes was 37 percent in 2013, up from 28 percent in 1990. This rising interest presents opportunities for reaching people more effectively with tailored information directed at those who access different media (or no media at all), those who rely on languages other than English, and those for whom lay educators (for example, promotoras) may be the most effective and culturally appropriate educational approach, as well as other means to reach those currently underserved.

A number of significant national efforts have encouraged more effective advance care planning and “having the conversation” and sought to improve end-of-life care more generally. National organizations, including the National Hospice and Palliative Care Organization, the Center to Advance Palliative Care, several insurers, private foundations, and others, have attempted to raise public awareness about what constitutes good end-of-life care and how people can go about obtaining it.

In recent years, end-of-life experiences have been the subject of numerous family memoirs. Mitch Albom’s 1997 book Tuesdays with Morrie has sold more than 14 million copies. Websites have been created to facilitate care planning conversations (for example, The Conversation Project, DeathWise, Aging with Dignity and Five Wishes, and Engage with Grace),

organize discussions on end-of-life topics (for example, Death Cafe, Death over Dinner),³ and support community-level advocacy (for example, Project Compassion). Some focus on medical decisions, some discuss relationships, and some also cover financial issues. Major movies, television series such as Showtime’s 2013 Time of Death, and individual episodes of dramatic programs have shown greater realism with respect to death and dying. Local and national documentaries (notably Bill Moyers’ PBS series On Our Own Terms) have covered the topic extensively, providing tools for individual action and community engagement and serving as the impetus for activities in hundreds of communities nationwide (RWJF, 2004a). Box 6-1 lists these and other examples of recent efforts to bring attention to end-of-life issues.

The written public testimony gathered for this study supports public education initiatives that would help normalize discussions of death and dying (see Appendix C). Comments encourage both television advertising campaigns and improvements in the relevant content of entertainment programming (such as more realistic portrayals of the likely outcome of resuscitation). Projects such as Hollywood Health and Society at the University of Southern California’s Annenberg School for Communication and Journalism advise on a range of health topics. The Writers Project of the Robert Wood Johnson Foundation’s Last Acts initiative worked with television writers and producers specifically on death and dying issues, with the goal of increasing the realism of depictions of end-of-life decision making and promoting understanding of palliative care (Hollywood Health and Society, 2014; RWJF, 2004b).

The idea that American society can have a national conversation about death and dying is supported by the confluence of several social forces (Novelli, 2013):

• Many Americans have seen how the current health care system has treated their parents and other family members and do not want that for themselves. This activated consumer generation is likely to be less passive about accepting care that violates their own wishes.
• Many people have stories about a death gone wrong, and increasingly, people are sharing those stories. This shared yet intensely private experience is common to people of all racial, ethnic, religious, social, political, educational, and occupational groups.

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³“Discussing end-of-life issues over dinner” coverage at http://www.aarp.org/money/investing/info-10-2013/death-dinner-parties-discuss-end-of-life.html?sf19245178=1 (accessed December 17, 2014).

• Leadership in public education is emerging at the local level in communities around the country and nationally through coalitions and collaborations.⁴

Features of several continuing public education efforts focused on the issue of advance care planning are provided in Table 6-1.

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⁴Coalitions and organizations currently participating in public education efforts include National Healthcare Decisions Day and the National Alliance for Caregiving, plus numerous independent organizations, such as the Caregiver Action Network, Compassionate Friends, and the Informed Medical Decisions Foundation.

CONSIDERATIONS FOR PUBLIC EDUCATION AND ENGAGEMENT CAMPAIGNS

Several recommendations presented in this report might be considered for inclusion in public education and engagement initiatives. Such efforts are likely to be more successful if the end-of-life care topic pursued is highly relevant to an organization’s mission and reflects the interests of the audiences that organization serves. For example, libraries might create reading lists or host book discussion groups on end-of-life topics, employers might review financial and end-of-life planning with employees nearing retirement, and senior centers might be concerned with raising awareness of caregiver issues. Coalitions of organizations might manage a broader set of topics and recruit members well positioned to address them.

The following subsections provide a brief review of major considerations entailed in developing a public education and engagement campaign. These considerations—sponsorship, audiences, messages, channels, and evaluation—are adaptable to a variety of organizations and themes. They can be understood in terms of either communications or social marketing⁵ (audience versus target market, for example).

Sponsorship

Especially with topics as sensitive as advance care planning and end-of-life care, the choice of a credible and trustworthy entity to sponsor a public education and engagement effort is critical. In many communities, coalitions of organizations have come together to sponsor a project, bringing in more people and providing assurance that the effort is broad based.

As reviewed in Chapter 1, a great many stakeholder groups have a professional or civic interest in end-of-life issues. They include health and social services professionals, clergy, volunteers, and others who provide direct care and counseling; those who manage health care institutions and programs, run public and private insurance programs, and advocate for better care; state and federal policy makers; and business executives and union leaders. Health care systems and voluntary health organizations may be able to deliver credible messages, but sponsorship and participation in coalitions are often broader than that. Other organizations—such as labor unions, religious organizations, public health agencies, and insurers—interested in the health and welfare of their members or the community also may become interested. A sponsor or coalition partner can be as large as a

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⁵Social marketing is the application of marketing principles to issues and causes involving personal behavior (antismoking campaigns, for example) or community betterment (promoting HIV/AIDS awareness, for example) (Grier and Bryant, 2005; Walsh et al., 1993).

TABLE 6-1 Features of Selected Organizations’ Public Awareness and Engagement Activities Related to Advance

SOURCES:

^aPersonal communication, S. Schettle, Twin Cities Medical Society and Honoring Choices Minnesota, December 5, 2013.

^bPersonal communication, P. Malley, Aging With Dignity, December 6, 2013.

^cPersonal communication, H. Warshaw, The Conversation Project, December 7, 2013.

^dCCCC, 2008, 2014; Personal communication, P. Bomba, Community Conversations on Compassionate Care, February 2, 2014.

^ePersonal communication, N. A. Kottkamp, National Healthcare Decisions Day, December 3, 2013.

national mental health organization or as small as one of its local chapters, a national religious body or an individual congregation.

Excellus BlueCross BlueShield, serving Upstate New York, has supported a Community-Wide End-of-Life/Palliative Care Initiative since 2001 that engages a broad array of professionals, consumers, and other collaborators from diverse backgrounds. This collaboration has achieved heightened awareness of the value of advance care planning and greatly increased the percentage of people who have completed health care proxies (through its Community Conversations on Compassionate Care Program); has implemented Medical Orders for Life-Sustaining Treatment (MOLST) (New York’s Physician Orders for Life-Sustaining Treatment [POLST] paradigm initiative) and eMOLST programs, described in Chapter 3; has led regional and statewide discussions and encouraged improved policies related to high-quality palliative and end-of-life care, including pain management and use of feeding tubes; has engaged in additional community-wide education efforts; and has conducted a number of surveys to establish baseline data and determine progress toward measurable goals (CCCC, 2014).

Audiences

Different end-of-life messages are relevant to different audiences, and there are various ways to segment audiences for the purpose of crafting messages with maximum appeal. The general rule of thumb in audience segmentation is to have relevant sameness within groups and relevant differences between groups (Andreason, 1995; Noar, 2006). Policy makers and health care leaders might respond to one message, whereas members of racial and ethnic minority groups might be interested in another; likewise, older and younger adults would likely respond to different messages.

Clinician audiences are a vital complement to public audiences. Opportunities for engagement exist within the clinical community. For example, clinicians who believe health professions schools should do a better job of teaching about palliative care might work through a professional group—and possibly even attempt to engage segments of the public—to advocate for increased palliative care training. Likewise, senior centers, employer groups, and other entities might want to tie messages for caregivers to programs aimed at healthy living, retiree benefits, and so on.

Audiences defined as the “general public” or “all Americans 65 and older” are usually too diffuse to be maximally useful in campaign planning. The more carefully a market can be segmented into different groups, with different messages and appropriate media for each, the more likely the members of those groups are to respond as desired (Andreasen, 1995;

Grier and Bryant, 2005; Walsh et al., 1993). Given the usual limited funding for educational and engagement efforts, audience segments can be prioritized by importance or likelihood of response. Thus, “segmentation can help managers achieve both efficiency and effectiveness” (Andreasen, 1995, p. 177).

Audiences can be segmented by socioeconomic strata, by role (e.g., caregivers, clergy), by their involvement with the issue, and in many other ways. For example, research has shown that people who have had a recent hospitalization or who have been a caregiver for someone who recently died are particularly receptive to engaging in advance care planning (Carr and Khodyakov, 2007). They would be a natural audience for messages on that topic.

Timing may be important in identifying a target audience. The point at which a serious illness is diagnosed may be the most critical period of attention and focus for individuals who are ill and their families, and the time when they are most in need of useful information. People in this audience may be seeking relatively in-depth information about what to expect as their illness progresses and how to respond to increasing care requirements.

An additional consideration is whether and how to target by behavior. People who actively seek out health information—for example, on the Internet—might constitute a discrete audience segment. Or people may reach a stage of behavior change that prompts them to seek information (the “stages of change” decision-making model is described in Chapter 3). Even within audience groups, there may be significant subaudiences. Online information seekers may be inclined to view their doctors as collaborators to whom they can bring relevant health care information for review and follow-up, or they may make use of the information independently. Making good use of online information sources requires that people “have skills to effectively seek out the desired information, evaluate it, and then apply the information they find toward solving their health problems” (IOM, 2009, p. 10). Almost 60 percent of the very large number of Internet users who seek out online health information say they have used it in making health decisions, and almost 40 percent say they have used it to change the way they manage a chronic condition or pain (Fox, 2006). Nevertheless, information provided in Chapter 3 about the low level of health literacy raises some question as to whether people can use the information they find in a way most useful to them. By contrast, people who have difficulty finding answers to their health questions or understanding complex issues may prefer to rely on their physicians to provide them with information. Although both groups are active information seekers, they differ in where they look

for information, the way they relate to physicians, and their demographic characteristics.⁶

Messages

Not until the target audiences have been chosen and some research on their current views on relevant themes has been conducted can the work of crafting specific messages begin. A number of past public engagement campaigns around end-of-life issues have focused on the concept of consumer/patient “control of your destiny” and the ability to “make your own decisions on your own terms” (for example, the public engagement campaign that accompanied Bill Moyers’ public television series On Our Own Terms in 2000). Research on the efficacy and outcomes of this messaging has been insufficient to allow assessment of audience response to this specific approach. Message development often proceeds in stages, beginning with in-depth personal interviews or focus groups, to gain a deeper understanding of the views held on a subject by members of a target audience. Those insights can be part of the basis for survey questionnaires administered to larger groups to learn what aspects of an issue are most meaningful. Survey responses can be either programmed (forced choice) or open-ended. Open-ended comments are another rich source of opinion data.

Several recent end-of-life campaigns—aided by the ability to make resources available via the Web—are providing much more in the way of supporting materials to back up their basic messages (see Box 6-1 and Table 6-1). An example is The Conversation Project, discussed in Chapter 3, whose basic theme is that people need to talk about the important but difficult topic of end-of-life care. Its message is the provocative “Have you had the conversation?” It supports that message by providing a Conversation Starter Kit and personal stories that can help normalize the discussion of the topic (Bisognano and Goodman, 2013). Lately, The Conversation Project has extended its message to emphasize the importance of conversations with clinicians as well.

Channels

Healthy People 2020, the federal government’s initiative to promote disease prevention and health promotion goals for the nation, acknowl-

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⁶From Porter Novelli’s 2013 ConsumerStyles survey. 2013 ConsumerStyles is an online survey (administered through GfK’s KnowledgePanel^®) among a representative sample of 6,717 U.S. adults, fielded March 29 to April 16, 2013. ConsumerStyles is Porter Novelli’s tri-annual survey that tracks Americans’ attitudes, lifestyle values, purchasing behaviors, technology use, and traditional and social media habits.

edges the important role of communications media in forming public views on health and disease. According to the U.S. Department of Health and Human Services (HHS, 2013), “Health communication and health information technology (IT) are central to health care, public health, and the way our society views health.” Information on health and medical care is widely available through traditional print and broadcast outlets, as well as through the Internet and social media, with more than 70 percent of Americans using the Internet to acquire health information (Fox and Duggan, 2013). Typical mass media campaigns are only one way to reach and influence key target audiences on end-of-life topics. Communicating through intermediaries, such as faith communities, health care providers, and consumer affinity groups, is another approach. The Robert Wood Johnson Foundation’s 10-year Last Acts campaign was built on a model of involving trusted organizations as “message carriers,” and by its close, organizations of all sizes were participating and sharing information with their constituents (Patrizi et al., 2011). Social media can be useful channels as well, especially when they engage people who feel connected to the message source. Offering high-quality websites at moments of readiness is another potentially useful strategy.

Entertainment television has not been overlooked as a vehicle for carrying health-related messages (Singhal and Rogers, 2004), including messages about death and dying. Both long story arcs—such as the illness and death of Dr. Mark Greene at the end of E.R.’s eighth season—and specific episodes of a program (e.g., N.Y.P.D. Blue, Gideon’s Crossing) have portrayed dilemmas and decisions that arise at the end of life. Some audience members who would never watch a documentary or attend a lecture on the topic are thereby exposed to valuable information (and sometimes misinformation). Social modeling theories suggest that audiences learn from fictional characters with whom they identify, making them more likely to emulate behavior that has positive outcomes and avoid behavior that has negative outcomes (Singhal and Rogers, 2004).

Evaluation

Evaluation is essential for campaigns to assess progress, make course corrections, and achieve meaningful results. Finding campaigns that have been well evaluated is difficult, however, and many of those that have been evaluated tackle topics that are so different from end-of-life care that comparisons may be elusive. The 2013 Pew Research Center survey cited earlier provides baseline data on consumer awareness, attitudes, and behavior regarding a number of issues related to advanced illness and end of life. Such national baseline information is a good starting point and with some refinement could be used to gauge the effectiveness of public awareness and

engagement initiatives at the state or local level. Organizations that sponsor end-of-life public education and engagement initiatives might be able to adopt at least some of these tracking survey questions for their projects for both program improvement and accountability purposes, as well as the ability to compare their project’s results with national trends. See Annex 6-1 at the end of this chapter for brief descriptions of selected health-related public information and engagement campaigns and their results.

CONTROVERSIAL ISSUES

Widely publicized controversies related to end-of-life care and dying are nothing new. These topics are perennial flashpoints for conflicts of values, particularly in a heterogeneous nation such as the United States. People’s views on serious illness and the end of life, bereavement and loss, and the duties of caregivers are deeply held and vary across many societal dimensions (see Chapter 3), as well as individuals of similar backgrounds. These are vital public issues as well, and while people may differ in their opinions about them, dissemination of relevant facts and evidence will enable those opinions to be based, insofar as possible, on the facts as they are known and a candid assessment of their limits.

This section examines several contentious issues related to end of life that are certain to recur. Because their recurrence can be foreseen, stakeholders should be prepared and should work with like-minded individuals and groups to coordinate their messages and campaign aggressively and effectively to promote an evidence-based and factual approach to these topics. Moreover, concern about spurious attacks should not deter advocates of person-centered, family-oriented care from responsible public engagement, from making policy recommendations, or from advocacy.

Physician-Assisted Suicide

Supporters refer to the ethical principle of autonomy in advocating state laws and policies to allow physician-assisted suicide. However, many clinicians and others believe the practice violates a different fundamental principle: “Do no harm.”

Opposition to public policy support for physician-assisted suicide goes beyond religious objections. Allowing people “a choice” of whether to end their lives may be fraught with opportunities for coercion and disruption of patients’ trust absent vigorous attempts to ensure that all Americans have access to high-quality care that would meet complex needs near the end of life, as well as systemic changes that would lessen burdens (financial and otherwise) on family members. As the American Geriatrics Society (AGS) stated in its 1996 Supreme Court amicus brief in the case of Vacco v. Quill,

“The health care available to the terminally ill may be the most important factor influencing the care provided and may result in requests for [physician-assisted suicide] that could be avoided if appropriate care were available. . . . The AGS has been opposed to legalizing [physician-assisted suicide] or physician involvement in euthanasia, primarily on the grounds that our frail elderly patients are especially vulnerable to social coercion and that the well-being of those who are old and sick is not being carefully considered” (Lynn et al., 1997, pp. 497-499).

In 1997, the U.S. Supreme Court ruled that assisted suicide is not a constitutionally protected right, although it did not bar states from formulating their own statutes to address it, and five now allow it under state law or court authorization.⁷ Legislatures in Oregon, Vermont, and Washington have enacted laws that permit state residents to end their lives voluntarily with a lethal dose of medication prescribed by a physician if they are “terminally ill” (Oregon), have a “terminal condition” (Vermont), or have a life expectancy of less than 6 months (Washington).⁸ During 2013, similar legislation was introduced in at least six states, and proposals to specifically outlaw the practice were introduced in two states. In Montana, legislation was proposed on both sides of the question, and the state Supreme Court ruled that physicians who help a person end his or her own life voluntarily will not be subject to trial for homicide.⁹ In early 2014, a New Mexico judge ruled that terminally ill, mentally competent patients have the right to “aid in dying” under the state constitution.¹⁰ If upheld, that decision may apply statewide. Continuing efforts to revise state laws guarantee that this controversial issue will be recurrent, at least locally if not nationally (Eckholm, 2014).

Withholding and Withdrawal of Life Support

Over the years, the issue of withholding and withdrawal (especially) of life support has stimulated contentious public debates and led to numerous changes in law and policy. These debates have frequently focused on women or minorities (Holloway, 2011). Many of their cases have prompted unprecedented public intervention in what would ordinarily be considered private family decisions.

The most widely publicized, and protracted, legal cases centered around three young women who left no advance directives—Karen Ann Quinlan,

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⁷Washington v. Glucksberg, 521 U.S. 702 (1997); Vacco v. Quill, 521 U.S. 793 (1997).

⁸Oregon Death with Dignity Act, OR. REV. STAT §§ 127.800-995, 1997; Washington Death with Dignity Act, R.C.W. 70.245, 2009; Vermont Patient Choice and Control at the End of Life Act, Act 39, 18 V.S.A. Chapter 113 (2013).

⁹Baxter v. Montana, 224 P.3d 1211 (Mont. 2009).

¹⁰Morris v. Brandenberg, D-202-CV-2012-02909 (N.M. 2d Jud. Dist., Jan. 13, 2014).

Nancy Beth Cruzan, and Teresa Marie Schiavo. Their sudden, unexpected, and permanent unconsciousness (from different causes) ignited strident public debates.¹¹ In each instance, the courts eventually decided that treatment could be withdrawn, but years of legal wrangling devastated family members and health care team members. According to Holloway (2011, p. 147), “When the body belongs to a woman or a member of a racial or ethnic minority, the privacy [that legal] protections ordinarily grant is already at risk.” The notoriety of such cases may prompt people to consider their own end-of-life preferences.¹²

As of early 2014, two cases involving clashes over cessation of treatment of individuals declared brain dead again received considerable media attention. One in California involved an African American child whose family wanted her to continue receiving treatment (Debolt, 2014). The other was a Latino woman whose family and husband wanted life support withdrawn, but because she was pregnant, Texas state law was believed to prohibit it (Hellerman et al., 2014). In the latter case, after 2 months of public discussion, a judge ruled the Texas law was being misapplied and ordered an end to treatment. As of June 2014, the child in California had been kept alive on life support for 6 months after being declared brain dead (Debolt, 2014). As technology improves the ability to keep body systems functioning even without mental function, more such cases can be expected.

Distributive Justice and Futile Care

As discussed in previous chapters, when patients and families have a clear understanding of the course of a terminal illness, the consequences and experience of cure-oriented versus palliative care, and the quality of life each produces, most choose the palliative approach. A minority of patients nevertheless do want aggressive care, and at present, they usually receive it. As a result, some question whether patients should be entitled to medical interventions that hold no realistic promise of extending life or improving or maintaining quality of life. Because many critical care services are expensive, is this the best way to spend health care dollars?

The principle of autonomy would suggest that individuals should receive whatever services they want. However, the amount of money society

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¹¹For a fuller legal and historical review of these cases, see Fine (2005) and Johnson (2009).

¹²An assessment of 117 individuals aged 50 and older enrolled in an ongoing advance directive study during the period of the Schiavo controversy found that 92 percent had heard about the case and had taken one or more actions as a result: had become more certain about their choices (61 percent), talked to their family or friends about what they would want in a similar situation (66 percent), decided to complete an advance directive (37 percent), discussed advance care planning with their physician (8 percent), and/or completed an advance directive (3 percent) (Sudore et al., 2008).

has available to spend on health care is not infinite. There are trade-offs and opportunity costs, as spending on truly futile health care services may deprive other people of important benefits, and services that provide the patient no benefit may be thought of as too expensive regardless of their cost (Meisel, 2008).

Other countries have faced this issue and come to different conclusions, while U.S. policy makers have strictly avoided any measures—such as basing reimbursement policy on comparative effectiveness assessments—that might have the effect of limiting care (Satvat and Leight, 2011). Ironically, economists and policy analysts readily acknowledge that allocation decisions are actually common in the United States, based mainly on ability to pay; they are merely implicit and hidden, rather than explicit, transparent, and potentially more fair (Lauridsen et al., 2007; Swanson, 2009).

Tensions surrounding this issue might be alleviated if research continued to show that receiving more medical interventions near the end of life does not produce better outcomes in terms of longevity or quality of life, as other chapters of this report have documented. The nation can no longer pretend that there is no upper limit on what it can afford, and the debate will continue to be divisive if concern about health care costs results in some version of a cap on spending.

Making Dying Visible

Given Americans’ acknowledged reluctance to discuss dying, an unlikely controversy arose in early 2014 about the use of social media to discuss the consequences of a serious illness. Lisa Bonchek Adams is an active user of social media—Facebook, Twitter, and her blog¹³—which she uses to talk about her metastatic breast cancer and coping with illness and grief and to urge her online followers to have cancer screenings. Although her illness is advanced and likely will eventually be the cause of her death, she was not dying at the time the controversy erupted.

Adams’ use of social media to discuss her disease was questioned in separate opinion pieces in both The Guardian and The New York Times by writers who found that her public discussion of her illness was unseemly (“dying out loud”) and who appeared to counsel passive acceptance as a more humane (and cheaper) alternative (Keller, 2014). People who follow Adams’ posts, and Adams herself, were quick to point out the many inaccuracies and misinterpretations of her intent and her own personal choices (Elliott, 2014; Tufekci, 2014), and a widely publicized backlash ensued that resulted in useful media soul searching, namely around using “one woman’s story as an occasion for debate about what might be wrong with broader

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¹³See http://lisabadams.com (accessed December 17, 2014).

approaches to dying” (O’Rourke, 2014). Following this public outcry, The Guardian removed the controversial article from its website (Elliott, 2014)

The controversy highlights Americans’ ambivalence about talking about dying, the sensitivity with which social justice principles need to be applied, and the dangers of making facile judgments about the care and treatment choices made by others. From a media analysis point of view, it shows evidence of the ability of story and of social media to engage people in a meaningful way if trust and respect are built over time, as Adams had done over a period of years.

The 2009 Controversy Over “Death Panels”

A significant setback to more effective advance care planning occurred when Section 1233 of a House bill (HR 3200, 111th Cong.) that led to the Patient Protection and Affordable Care Act of 2010 was withdrawn after false and misleading statements that it would establish “death panels.” The provision would have reimbursed clinicians for the time spent in advance care planning with patients. Such conversations would have included discussion of the documents that can help ensure that patients’ wishes regarding care are followed in the event they become unable to express them.¹⁴

Too often, clinicians, patients, and families embark on a treatment journey for a serious disease without important information and understanding

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¹⁴Specifically, Section 1233 of HR 3200, 111th Cong., titled “Advance Care Planning Consultation,” would have allowed “(A) An explanation by the practitioner of advance care planning, including key questions and considerations, important steps, and suggested people to talk to; (B) An explanation by the practitioner of advance directives, including living wills and durable powers of attorney, and their uses; (C) An explanation by the practitioner of the role and responsibilities of a health care proxy; (D) The provision by the practitioner of a list of national and State-specific resources to assist consumers and their families with advance care planning, including the national toll-free hotline, the advance care planning clearinghouses, and State legal service organizations (including those funded through the Older Americans Act of 1965); (E) An explanation by the practitioner of the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services and supports that are available under this title; and (F) . . . An explanation of orders regarding life sustaining treatment or similar orders, which shall include—(I) the reasons why the development of such an order is beneficial to the individual and the individual’s family and the reasons why such an order should be updated periodically as the health of the individual changes; (II) the information needed for an individual or legal surrogate to make informed decisions regarding the completion of such an order; and (III) the identification of resources that an individual may use to determine the requirements of the State in which such individual resides so that the treatment wishes of that individual will be carried out if the individual is unable to communicate those wishes, including requirements regarding the designation of a surrogate decision-maker (also known as a health care proxy)” (America’s Affordable Health Choices Act of 2009, HR 3200.IH, 111th Congress, 1st sess. http://www.gpo.gov/fdsys/pkg/BILLS-111hr3200ih/pdf/BILLS-111hr3200ih.pdf [accessed August 22, 2013]).

of the illness and its likely course, and at times with a conscious effort to protect another from the truth about these matters (Kumar and Temel, 2013; Piemonte and Hermer, 2013). Without understanding the likely course of illness and the risks and benefits of treatment choices, patients (and families) cannot make informed decisions about care (Hajizadeh et al., 2013; Weeks et al., 2012). By contrast, a good advance care planning process gives people “a way to think about death and dying”; for some people, that discussion can allow them to confront dying directly instead of its being a “vague, unmanageable concept” (Martin et al., 1999, p. 88).

At least an hour is usually needed to explore such topics thoroughly (Briggs et al., 2004; Detering et al., 2010). According to the National Center for Health Statistics (undated), in 2010, the average U.S. physician visit lasted only 21 minutes, and more than half of visits lasted 15 minutes or less. Lack of time and lack of payment make clinicians even less likely to have difficult conversations they may be reluctant to have in the first place.

The allegation of “death panels” was first made in 2009. Although no aspect of Section 1233 bore any resemblance to the accusation, it was repeated so often that many people came to regard it as truth. Public education efforts by medical and public health authorities were ineffective in countering this misinformation. The Kaiser Family Foundation’s Health Tracking Poll of March 2012—2 years after passage of the Affordable Care Act—revealed that 36 percent of Americans erroneously believed the law actually contains a provision to “allow a government panel to make decisions about end-of-life care for people on Medicare,” and 20 percent responded “don’t know” (KFF, 2012). When that polling question was repeated in 2013, 40 percent said they believed the law contains this provision, and 21 percent did not know (KFF, 2013). Thus, 3 years after the act’s passage, 60 percent of Americans either believed or were unsure whether “death panels” are law.

Section 1233 of HR 3200 (111th Cong.) was strongly opposed by conservative protestors. House Minority Leader John Boehner and Representative Thaddeus McCotten (R-MI) said the legislation “may start us down a treacherous path toward government-encouraged euthanasia” (Boehner and McCotter, 2009; Pear and Herszenhorn, 2009)—opposition that was

“startling because the need for such legislation had been recognized by both political parties for some time” (Altman and Shachtman, 2011, p. 282). In the months before the introduction of HR 3200 with Section 1233, two bills were introduced in the House and one in the Senate relating to orders for life-sustaining treatment and advance care planning, two with bipartisan support.¹⁵

Recent polls conducted with the American public also reveal strong support for advance care planning. In one 2011 poll,

• 97 percent agreed or strongly agreed that “it is important that patients and their families be educated about palliative care and end-of-life care options available to them along with curative treatment”;
• 86 percent thought these discussions should be fully covered by health insurance; and
• 81 percent thought they should be fully covered by Medicare (Regence Foundation and National Journal, 2011a).

Similarly, when the California HealthCare Foundation polled 1,669 adult Californians (including 393 people who had lost a loved one in the previous year) about their attitudes toward end-of-life topics, respondents were asked, “One idea is to have insurance plans cover a doctor’s time to talk with patients about treatment options towards the end of life. Do you think this is a good idea or a bad idea?” Eighty-one percent of respondents thought it was a “very good” or “somewhat good” idea (CHCF, 2012).¹⁶ Although the question was worded neutrally, this level of support was significant—especially because public opinion research indicates that 43 percent of American consumers do not trust their health insurance plan (PRG, 2012).

So why did the important effort represented by Section 1233 fail? Leaving aside the fear that underlies many Americans’ unwillingness to contemplate mortality, concerns about paying for advance care planning were exacerbated by opposition to comparative effectiveness research. Opponents claim that such research will prevent Americans from obtaining treatments they want and lead to rationing based on an external view of

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¹⁵Advance Planning and Compassionate Care Act of 2009, HR 2911, 111th Cong.; Life Sustaining Treatment and Medical Preferences Act of 2009, HR 1898, 111th Cong.; and Advance Planning and Compassionate Care Act of 2009, S 1150, 111th Cong. HR 1898 and S 1150 had bipartisan support. Furthermore, previous versions of S 1150 had been introduced in 2007 (S 464, 110th Cong.), 2002 (S 2857, 107th Cong.), 1999 (S 628, 106th Cong.), and 1997 (S 1345, 105th Cong.), all with bipartisan support.

¹⁶The group most likely to say it was a bad idea were men aged 65 and older; 30 percent of this group thought it was a “somewhat bad” or “very bad” idea.

their likely effectiveness or excessive expense. While other countries do factor cost comparisons into decisions on which services to reimburse with public monies (Satvat and Leight, 2011), the U.S. approach explicitly prohibits any consideration of treatment costs (Altman and Shachtman, 2011).

The objections to facilitating advance care planning may be misplaced when, as discussed in Chapter 3, some evidence suggests that people who do plan for their care most often choose less aggressive care. This choice has been associated with increased survival, better quality of life, and decreased stress and psychological impacts on family members (Mack et al., 2010; Temel et al., 2010; Wright et al., 2008). No association has been found between having an advance directive discussion or document and earlier death (Fischer et al., 2010). Indeed, according to Winter and Parks (2012, p. 741), “Ironically, we found that those who avoid living wills and end-of-life conversations are the least likely to have treatment wishes respected, because their proxies are unlikely to know their wishes.”

Improving the care people receive at the end of life by giving them the care they actually want while saving money by avoiding costly and futile interventions people do not want could have been a strategy with multiple benefits for the health system. But the discussion of these two goals—individual care and collective savings—in the same public conversation may help explain why the proposed provision “became the lightning rod it did” (Kaebnick, 2013, p. 2). Accordingly, some commentators would keep the financial argument completely out of the advance care planning discussion (Fried and Drickamer, 2010). As a Washington Post opinion piece said, because health care reform was promoted in large part on the grounds that it would control rising and unsustainable health care costs (Antos et al., 2009), in that context, “citizens are not delusional to conclude that the goal [of Section 1233] is to reduce end-of-life spending” (Robinson, 2009).

In early January 2011, the Centers for Medicare & Medicaid Services (CMS) withdrew “voluntary advance care planning” as a specified element of the Medicare annual wellness visit (HHS, 2011). This decision was due to the discordant views of stakeholders, “including those who disagreed when the idea of voluntary advance care planning was first proposed under the Patient Protection and Affordable Care Act” (Holley, 2011). The CMS final rule acknowledged as much:

In August 2013, the bipartisan team of Senators Mark Warner of Virginia and Johnny Isakson of Georgia again pursued the goal of reimbursement for advance care planning discussions by introducing the Care Planning Act of 2013.¹⁷ According to Warner, the bill “is about honoring a patient’s choice, not making it for them” (Mundy, 2013). Nevertheless, the staying power of the distortions around “death panels” may have doomed the senators’ initiative.

As Piemonte and Hermer (2013, p. 24) advise, “If we are ever to make progress toward creating policy that incentivizes physicians to engage in constructive end of life conversations, we need to do so in a way that appeals to the shared values of those across the political spectrum.” Recent public opinion research suggests there is ample support for advance care planning and insurance that covers it. Targeted public education and engagement efforts may move the needle on these policy initiatives.

RECOMMENDATION

Recommendation 5. Civic leaders, public health and other governmental agencies, community-based organizations, faith-based organizations, consumer groups, health care delivery organizations, payers, employers, and professional societies should engage their constituents and provide fact-based information about care of people with advanced serious illness to encourage advance care planning and informed choice based on the needs and values of individuals.

Specifically, these organizations and groups should

• use appropriate media and other channels to reach their audiences, including underserved populations;
• provide evidence-based information about care options and informed decision making regarding treatment and care;
• encourage meaningful dialogue among individuals and their families and caregivers, clergy, and clinicians about values, care goals, and preferences related to advanced serious illness; and
• dispel misinformation that may impede informed decision making and public support for health system and policy reform regarding care near the end of life.

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¹⁷Care Planning Act of 2013 (S 1439, 113th Cong., 1st sess.).

In addition,

• health care delivery organizations should provide information and materials about care near the end of life as part of their practices to facilitate clinicians’ ongoing dialogue with patients, families, and caregivers;
• government agencies and payers should undertake, support, and share communication and behavioral research aimed at assessing public perceptions and actions with respect to end-of-life care, developing and testing effective messages and tailoring them to appropriate audience segments, and measuring progress and results; and
• health care professional societies should prepare educational materials and encourage their members to engage patients and their caregivers and families in advance care planning, including end-of-life discussions and decisions.

All of the above groups should work collaboratively, sharing successful strategies and promising practices across organizations.

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ANNEX 6-1:
SELECTED PUBLIC ENGAGEMENT CAMPAIGNS
ON HEALTH-RELATED TOPICS

SOURCES:

^aAsbury et al., 2008; Berkowitz et al., 2008; Huhman et al., 2004, 2010; Wong et al., 2004, 2008.

^bEl-Guebaly, 2005; Fell and Voas, 2006; MADD, 2014; McCarthy and Wolfson, 1996.

^cFDA, 2014a,b.

^dALF, 2012, 2014; Emery et al., 2012; Evans et al., 2002; Farrelly et al., 2002, 2005, 2009a,b; Holtgrave et al., 2009; Richardson et al., 2010.

^eCarroll and Van Veen, 2002.

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