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6 Public Education and Engagement
Pages 345-384

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From page 345...
... 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.
From page 346...
... 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)
From page 347...
... 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.
From page 348...
... 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)
From page 349...
... . Nor do clinicians always correctly distinguish between "palliative care" and "hospice," the latter being a model for delivering palliative services.
From page 350...
... (Pew Research Center, 2009)
From page 351...
... report having any education or training regarding financial issues and how to discuss them (Regence Foundation and National Journal, 2011b)
From page 352...
... 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.
From page 353...
... The written public testimony gathered for this study supports public education initiatives that would help normalize discussions of death and dying (see Appendix C)
From page 354...
... : https://www.compassionandsupport.org National Healthcare Decisions Day: http://www.nhdd.org Life Before Death: The Lien Foundation: http://www.lifebeforedeath.com/ index.shtml Before I Die: http://beforeidie.cc Death Clock: http://www.deathclock.com Films and Television Series Time of Death: http://www.sho.com/sho/time-of-death/home On Our Own Terms: http://www.pbs.org/wnet/onourownterms Honoring Choices Minnesota: http://www.honoringchoices.org A Good Day to Die: http://thediemovie.wordpress.com Ways to Live Forever: http://trailers.apple.com/trailers/independent/ waystoliveforever How to Die in Oregon: http://www.howtodieinoregon.com/trailer.html Amour (Academy Award Winner, Best Foreign Language Film) : http://www.sonyclassics.com/amour • Leadership in public education is emerging at the local level in com munities 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.
From page 355...
... . Sponsorship Especially with topics as sensitive as advance care planning and endof-life care, the choice of a credible and trustworthy entity to sponsor a public education and engagement effort is critical.
From page 356...
... d (NHDD) e Purpose Encourage Improve how people Ensure that end- Motivate advance Inspire, educate and discussions of end-of- talk about and plan of-life care wishes care planning empower the public life care preferences for end-of-life care are expressed and discussions and and providers about the respected completion of importance of advance care advance directives planning Target Anyone over age 18 All adults, especially Anyone over age 18 General public and health audience those who would be care providers "champions" of the message Time frame 2008-present 1997-present 2012-present 2002-present 2008-present Outreach Volunteers; media; Mass media, word of National media Volunteer coalition; Public events, website, methods partnerships with mouth, professional campaign, website, employer outreach; email, social media the faith community, associations, social media, dissemination of multicultural groups, champions, traditional media, educational tools health and human translation of the entertainment through workshops, services providers Five Wishes advance industry, employers, print, video, Internet, directive into 27 faith community and broadcast and languages social media
From page 357...
... A Kottkamp, National Healthcare Decisions Day, December 3, 2013.
From page 358...
... 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)
From page 359...
... , 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)
From page 360...
... ConsumerStyles is Porter Novelli's tri-annual survey that tracks Americans' attitudes, lifestyle values, purchasing behaviors, technology use, and traditional and social media habits.
From page 361...
... 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)
From page 362...
... 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.
From page 363...
... 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)
From page 364...
... , discussed advance care planning with their physician (8 percent) , and/or completed an advance directive (3 percent)
From page 365...
... 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.
From page 366...
... 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.
From page 367...
... . 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.
From page 368...
... 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 15  dvance A 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.
From page 369...
... . 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)
From page 370...
... Civic leaders, public health and other govern mental agencies, community-based organizations, faith-based organi zations, 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 in formed decision making regarding treatment and care; • encourage meaningful dialogue among individuals and their fami lies 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.
From page 371...
... American Journal of Preventive Medicine 34(Suppl.
From page 372...
... 2010. The impact of advance care planning on end of life care in elderly patients: Randomised controlled trial.
From page 373...
... care planning. Journal of the American Medical Association 303(3)
From page 374...
... 2011. CMS rule reversal: Understanding the impact on advance care planning.
From page 375...
... 2013. Senators revive push for end-of-life-care planning.
From page 376...
... 2012. Acceptors and rejecters of life-sustaining treatment: Differences in advance care planning characteristics.
From page 377...
... : Reflec tions on the VERB™ campaign. American Journal of Preventive Medicine 34(Suppl.
From page 378...
... 378 DYING IN AMERICA ANNEX 6-1: SELECTED PUBLIC ENGAGEMENT CAMPAIGNS ON HEALTH-RELATED TOPICS Campaign Goals Target Populations VERB™a Increase and maintain physical Primary audience: tweens (children Launched June activity among tweens 9 to 13) 2002 (children ages 9 to 13)
From page 379...
... Outreach to from 67 percent in 2003, the first year of parents and other adults lagged, data collection. but when implemented, focused Campaign exposure was found to have a on gaining their buy-in to the dose-response effect on previous-day campaign in order to garner physical activity during data collection in support for the initiative.
From page 380...
... 380 DYING IN AMERICA Campaign Goals Target Populations Mothers Against Prevent underage drinking; Youth, victims and families of Drunk Driving stop drunk driving; victims of drunk driving, policy (MADD) b reduce the number of makers Launched accidents, injuries, and September 1980 deaths from drunk driving and support victims of drunk driving "The Real Cost" Reduce the number of youth Teens aged 12-17 who are at risk AntiTobacco cigarette smokers; prevent for using or have experimented Campaignc teenagers from trying with cigarettes Announced cigarettes, or if they have February 2014 already done so, get them to quit
From page 381...
... Food and Drug Administration educates at-risk teenagers by will evaluate the campaign through a spotlighting the health hazards of multiyear, nationwide, longitudinal study smoking in advertisements and on to assess changes in tobacco-related social media. knowledge, attitudes, and behaviors.
From page 382...
... 382 DYING IN AMERICA Campaign Goals Target Populations "Truth" Prevent teens from ever trying Primary audience: teenagers aged AntiTobacco a cigarette and reduce youth 12-17 Campaignd smoking Secondary audience: young adults Launched aged 18-24 February 2000 "Immunise Increase the number of children Mothers with children up to age 5 Australia" up to age 6 who have been Secondary audience included Program Social fully immunized family, friends, and health care Marketing providers Campaigne Launched February 1997 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.
From page 383...
... Virgin Mobile; From 2000 to 2004, it is estimated that truth •  a website and social media, which was significantly associated with reduced include facts, games, and contests; youth smoking prevalence and prevented and more than 450,000 teens and young •  a grassroots truth tour that travels adults from using tobacco. the country to connect with youth From 2000 to 2002, truth saved $1.9-$5.4 and engage them on a peer-to-peer billion in medical care costs to society.


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