Chronic Illness Trends and the Challenges to Family Caregivers

Chapter 7

Chronic Illness Trends and the Challenges to Family Caregivers: Organizational and Health System Barriers Jennifer L. Wolff1 and Barry J. Jacobs2 1

Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA, 2Crozer-Keystone Family Medicine Residency Program, Springfield, PA, USA

Population aging has contributed to rising chronic disease and disability prevalence, growing demands on health and long-term care (LTC) delivery systems, and pressing concerns regarding the sustainability of healthcare entitlement programs (Fineberg, 2012; Oeppen & Vaupel, 2002; Orszag & Ellis, 2007). This chapter discusses the dynamics of demographic trends and the environmental context in which healthcare and long-term services and supports are organized, financed, and delivered, and relates these factors to the health experiences of family caregivers. We provide a general overview of population trends that frame the scope of family caregiving and discuss how the current health and LTC reimbursement and delivery environment relate to the care of individuals with complex care needs and their involved family caregivers. The chapter considers how broad population trends and the service delivery environment relate to family caregivers’ preparedness and experiences, as well as the impacts of engaging in the caregiving role. While these topics are of worldwide interest, the orientation of this chapter is specific to the regulatory framework, reimbursement paradigm, and delivery system of the United States.

THE BROADER CONTEXT OF DEMOGRAPHIC, CHRONIC ILLNESS, AND DISABILITY TRENDS This is a time of striking change in the expectation and experience of late life. Advances in public health and hygiene, educational attainment, and biomedical therapies have collectively contributed to dramatic and sustained increases in life expectancy. According to the US Census Bureau, the 3.1 million people aged 65 and older living in the United States in 1900 comprised 4.1% of the US population. By 2010, the population 65 years and older was about 40.2 million and Family Caregiving in the New Normal. DOI: http://dx.doi.org/10.1016/B978-0-12-417046-9.00007-6 © 2015 2013 Elsevier Inc. All rights reserved.

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comprised 13% of the general population. By 2030, the numbers of Americans aged 65 and older are projected to rise to more than 72 million and comprise 19.3% of the general population (Vincent & Velkoff, 2010). Moreover, greater numbers of people are not simply attaining “old age,” they are increasingly living into the oldest age groups beyond 85, 90, and even 100 years of age. By 2030, Americans 85 years or older (i.e., the “oldest old”) are expected to number more than 8 million (Vincent & Velkoff, 2010) and the number of centenarians will approach 150,000, approximately five times greater than the estimated 32,000 centenarians living in the United States in 1980 (Census Bureau, 2012). Population aging, along with biomedical advances that allow earlier detection and more effective treatment of chronic medical illness and other health conditions, portend greater numbers of Americans living with chronic medical illness, cognitive impairment, and disability. A recent analysis of the prevalence of health conditions among older adults between 1993 and 2009 reported variability by types of conditions, with reductions in recoverable acute conditions (e.g., hip fracture and stroke) but significant increases in the prevalence of diseases such as arthritis, diabetes, pulmonary disease, and Alzheimer’s and other dementias (Cutler, Ghosh, & Landrum, 2013). It is estimated that there are now 2.4–5.2 million Americans living with dementia (Lin, O’Connor, Rossom, Perdue, & Eckstrom, 2013; Plassman et al., 2007; Querfurth & LaFerla, 2010), and without a major therapeutic breakthrough, the Alzheimer’s Association forecasts that their numbers will grow 40% to 7.1 million by 2025 (Alzheimer’s Association, 2013). The numbers of persons living with diagnosed Parkinson’s disease is projected to rise by 68% between 2010 and 2030 (Kowal, Dall, Chakrabarti, Storm, & Jain, 2013). The challenge imposed by chronic illness increasingly extends to individuals living not just with one, but with multiple co-occurring conditions (Boyd et al., 2005; Tinetti, Fried, & Boyd, 2012). For example, billing data (which is subject to under-ascertainment), indicates that the proportion of Medicare beneficiaries with none or just one of 15 chronic conditions to be just 37% among older adults ages 65–74, while just 17% of older adults greater than 85 years of age have none or one chronic condition. In contrast, the proportion of Medicare beneficiaries with six or more chronic conditions was 9% of older adults 65–74 years and 25% of adults ages 85 and older (CMS, 2012). Given demographic trends and rising prevalence of chronic illness, the numbers of individuals with multiple chronic conditions will likely grow in the future. Individuals with chronic conditions rely heavily on the healthcare system to curtail disease progression and maintain function. Consequently, they are heavy users of all types of health services, including doctor visits, emergency room visits, prescribed medications, hospitalizations, and postacute services such as home health care (CMS, 2012; Hoffman, Rice, & Sung, 1995). Rates of health service use are incrementally higher among persons with multiple chronic conditions. The 68% of Medicare beneficiaries with more than 1 chronic conditions account for 93% of Medicare expenditures; among Medicare

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beneficiaries with six or more chronic conditions, average annual per-capita spending in 2010 was $31,444 compared to $1808 among their counterparts with no or one condition (CMS, 2012). However, Medicare, as well as most other health insurers, fail to reimburse many health-related needs such as long-term services and supports that fall outside an acute or postacute episode (Vladeck, 2002). Out-of-pocket spending for noncovered services is consequently much greater among individuals with chronic and disabling conditions (Hwang, Weller, Ireys, & Anderson, 2001; Neuman, Cubanski, Desmond, & Rice, 2007). The impacts of chronic illness are pervasive and extend beyond the financial consequences of out-of-pocket spending on health care to limitations in physical and emotional function and the ability to perform valued, important, and essential activities (Wagner, Austin, & Von Korff, 1996). Individuals with chronic and disabling illnesses are more likely to experience trouble with instrumental activities of daily living (IADLs), such as managing money, shopping, preparing meals, or taking medications as prescribed. Impaired physical and cognitive functions may also affect the ability to perform more basic activities of daily living (ADLs), such as taking care of personal hygiene, eating, getting dressed, or toileting. As a result of impaired function, some people may rely on long-term services and supports to perform daily activities. Assistance may be delivered in a wide range of residential and institutional settings, but the vast majority of individuals with disabilities live in the community (CBO, 2013; Kaye, Harrington, & LaPlante, 2010). Family members, friends, neighbors, or volunteer organizations are often instrumental in helping to navigate health system demands, manage healthcare activities, and perform daily tasks. Thus, the social, emotional, physical, and financial impacts of chronic illness and disability commonly extend beyond an individual to family, friends, and communities. In summary, dramatic demographic changes are now underway in the United States. Growing numbers of individuals attaining older ages and rising chronic disease prevalence have contributed to aggregate increases in the numbers of individuals who are living with complex health needs and disabilities, and in turn increasing demands for healthcare and long-term services and supports. Collectively, these trends have also led to greater demands being placed upon affected individuals’ family and social networks.

THE FAMILY CAREGIVER WORKFORCE: SIZE, COMPOSITION, AND SCOPE OF THE JOB The term family caregiving refers to the exchange of instrumental, emotional, or informational support to people of all ages and for a wide range of healthrelated reasons. This term is defined here as a relative, friend, or neighbor who provides assistance to a person due to an underlying physical or mental disability. Although alternative terms exist (e.g., informal caregiver, carer, family or friend, surrogate or proxy informant, decision maker, visit companion, or

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care partner), and some family caregivers are not related, this particular term acknowledges that the underlying rationale driving provision of assistance is an emotional commitment between caregiver and care recipient rather than economic remuneration. Family caregivers are the predominant providers of personal care, household, and health management assistance for chronically ill and disabled individuals (CBO, 2013; Kaye et al., 2010). A 2013 Congressional Budget Office (CBO) report estimated the economic value provided by family caregivers to older adults was $234 billion in calendar year 2011, far exceeding the $58 billion spent on community-based, long-term services and supports—and nearly double the $134 billion spent on institutional care (CBO, 2013). It is important to emphasize that estimates of the numbers, composition, and roles of family caregivers vary widely across national surveys and that there is far less systematic accounting of the qualifications and competence of this sizeable workforce relative to other healthcare providers (IOM, 2008). For example, in an analysis of eight nationally representative surveys, prevalence estimates of the number of family caregivers of chronically disabled older adults in the United States were found to vary dramatically (from 2.7 million to 36.1 million); factors contributing to these differences included survey design, sampling frame, and question wording (Giovannetti & Wolff, 2010). Caregivers come in all shapes and sizes. Despite considerable variability in the circumstances of each individual situation, national surveys consistently show that family caregivers are most often middle-aged parents, daughters, or spouses (Johnson & Wiener, 2006; Kaye et al., 2010; Wolff & Kasper, 2006), and that they typically either live together or within close proximity of care recipients (Johnson & Wiener, 2006; Wolff & Kasper, 2006). Approximately one-third to one-half of family caregivers are employed; employment rates are understandably higher among adult child caregivers relative to spouses who may be older themselves (Johnson & Wiener, 2006; Spillman & Pezzin, 2000; Wolff & Kasper, 2006). For example, the chapters in this volume by Emily Kearns and Michele Kimball describe classic “sandwich generation” caregivers who are strained by simultaneously caring for declining parents and young children while also maintaining demanding full-time jobs. The shifting composition and experience of family caregivers reflects broader health and demographic trends (see Chapter  6). Declining fertility, delayed marriage, evolving gender roles, geographic mobility, and greater rates of cohabitation and childbirth outside marriage collectively challenge the conventional definition and structure of family (Cherlin, 2010; Karraker & Grochowski, 2012). In the aggregate, population aging will result in greater numbers of chronically ill and disabled older adults alongside fewer available kin helpers who will also be older, and therefore more likely to be managing medical problems of their own. For example, the proportion of spousal caregivers aged 75 or older increased from 38.2% in 1989 to 47.4% in 1999 (Wolff & Kasper, 2006). There is a growing awareness of the challenges experienced by

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young adult (Levine et al., 2005) and grandparent caregivers (Kolomer, 2008), caregivers who provide assistance from long distances (Bevan & Sparks, 2011), and caregivers who are responsible for providing complex, medically oriented care (Reinhard, Levine, & Samis, 2012). Available data and sampling strategies in national surveys preclude a comprehensive understanding of caregiving within the context of acute-onset illnesses or transitional care, for brief periods of time, at the end of life, or within the context of institutional LTC. Family caregivers play multiple roles (Table 7.1). Because family caregiving has most often been defined in relation to chronic disability, the nature and scope of demands that pertain to navigating health system and chronic illness demands are less well understood. Nevertheless, studies using qualitative methods and

TABLE 7.1 Health-Related Responsibilities Assumed by Family Caregivers Role

Function

Examples

Attendant

Provide task assistance

Hands-on personal care task assistance

Administrator

Manage household activities

Inventory, purchase food & medications, prepare meals

Companion

Provide emotional support

Discuss ongoing life challenges, troubleshoot problems, facilitate and participate in leisure activities

Driver

Facilitate transportation

Arrange/provide transportation to appointments

Navigator

Coordinate care across providers and care settings

Schedule, attend appointments; ensure flow of information among providers

Technical interpreter

Facilitate patient understanding

Clarify providers’ explanations, technical terms; record and remember discussions with providers

Patient Ombudsman

Facilitate provider understanding

Clarify and expand on patient history, symptoms, concerns; introduce topics to provider

Coach

Encourage patient self-care activities

Prompt patients’ engagement in health care, encourage lifestyle (diet, exercise), and treatment adherence

Advocate

Request services

Arrange tests, procedures, medications, or other services

Case manager

Coordinate services

Prevent duplication of medications; assure patient keeps appointments

Healthcare provider

Deliver medical care

Administer medications, monitor clinical indices, operate equipment

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nonrepresentative samples indicate that family caregivers function as a largely hidden “shadow” workforce at the intersection of older adults’ medical and LTC delivery (Bookman & Harrington, 2007; IOM, 2008). They engage in a broad range of healthcare activities that pertain to advocacy, medical decision making, monitoring and adherence to prescribed treatments, coordination of health information, maintenance and operation of medical equipment, and management of patient transitions across care settings, such as from hospital to home (DesRoches, Blendon, Young, Scoles, & Kim, 2002; Donelan et al., 2002; Gitlin & Wolff, 2011; Stone, Cafferata, & Sangl, 1987; Wolff & Kasper, 2006). For example, in Chapter  3, Christine Hartmann describes providing intensive care coordination and financial management for her father after his disabling stroke. A recent study that characterized “disease management supporters” of nondisabled individuals with chronic illnesses found approximately 100 million US adults help a family member or friend with chronic disease management activities, such as medication management and care coordination outside the scope of disability (Rosland et al., 2013). People with greater age, lower educational attainment, and worse physical and cognitive health status are more likely to bring a family member or friend to their medical encounters (Laidsaar-Powell et al., 2013; Wolff & Roter, 2011). Approximately 40% of older adults attend medical visits with an unpaid “companion”—predominantly a spouse or adult child (Wolff & Roter, 2008, 2011). These companions are not simply present; they actively participate in communication (Laidsaar-Powell et al., 2013; Wolff & Roter, 2011) and remain involved over time (Wolff, Boyd, Gitlin, Bruce, & Roter, 2012), which suggests that companions may play a role in the coordination of care between healthcare providers. Individuals who are older (Deimling, Smerglia, & Barresi, 1990; Ende, Kazis, Ash, & Moskowitz, 1989; Kapp, 1991), less educated (Wolff & Roter, 2008), and with lower health literacy (Gaglio, Glasgow, & Bull, 2012; Smith, Dixon, Trevena, Nutbeam, & McCaffery, 2009) often desire and benefit from the active involvement of a companion when communicating during medical visits. The frequency and challenges of surrogate decision making among people who are seriously ill, hospitalized, or nearing the end of life are well documented. Between 25% and 40% of hospitalized patients and nearly all critically ill patients in the intensive care unit (ICU; Boustani et al., 2010; Raymont et al., 2004; Sessums, Zembrzuska, & Jackson, 2011) lack capacity or are impaired in their cognitive ability to engage in medical decision making. In one prospective observational study, 47.4% of hospitalized older adults were found to require at least some surrogate involvement, and 23.0% relied entirely on surrogate decision makers; surrogate decision makers were more often involved with complex decisions, such as life-sustaining treatment relative to patients who were able to make decisions independently (Torke et al., 2014). Consequences of surrogate decision making may include stress, anxiety, and emotional burdens and they can persist for years (Vig, Starks, Taylor, Hopley, & Fryer-Edwards, 2007; Wendler & Rid, 2011). Although information regarding the consequences of family caregivers’ involvement in healthcare delivery processes is limited, there are reasons to

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believe that they confer considerable benefit to the health system. For example, social support has been found to be strongly correlated with treatment adherence (DiMatteo, 2004), as well as a range of other outcomes (Taylor, 2011). Other studies find the availability and preparedness of older adults’ helpers influence the site of posthospital discharge and course of recovery (Kane et al., 2000; Kramer et al., 1997; Weinberg, Lusenhop, Gittell, & Kautz, 2007). The absence of generalizable information regarding family participation in health care has precluded a credible understanding of what benefits might result from better support of the patient-family unit.

CHALLENGES Increased Complexity/Confusion in the Prevailing Insurance Paradigm Advances in therapeutically beneficial biomedical technologies make access to health insurance to absorb the costs of expensive health care more important than ever before. However, the US healthcare insurance landscape is pluralistic, bureaucratic, and confusing. Healthcare insurers include Medicare Parts A, B, C, and D, Medigap, retiree programs, 50 state Medicaid programs, thousands of employer-sponsored insurance plans in partnership with private insurers, the Veterans Administration, and the Federal Employees Health Benefits Program, among others. At an individual level, this complexity is amplified by churning, or rapid turnover in plan enrollment due to changes in employment or eligibility to public programs (Saunders & Alexander, 2009; Short & Graefe, 2003). Recent market-oriented approaches have expanded the role and emphasis of consumers in making coverage decisions, as well as the complexity of decisions that must be made. For example, while the underlying structure of the fee-for-service Medicare program has remained fairly stable, the introduction of the Medicare prescription drug benefit (Medicare Part D), the expansion of Medicare managed care (Medicare Part C, currently known as “Medicare Advantage”), and cutbacks in employer-sponsored supplemental health insurance have increased the number of beneficiaries facing annual enrollment decisions and have elevated the importance of these decisions. Health insurance enrollment decisions are increasingly being supported through electronic information regarding plan options, covered services, and cost sharing specific to a geographic area or prescription drug regimen. Few individuals are equipped to make informed decisions about the purchase of health insurance (Hanoch & Rice, 2006; Loewenstein et al., 2013). Access to and use of the Internet among older adults remain lower than working-age individuals (Zickuhr & Madden, 2012). In addition, the ability to navigate Internet-based enrollment decisions may exceed the capacity of individuals who are less literate or who have sensory impairments or cognitive deficits. Less literate and cognitively impaired beneficiaries more often

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fail to take up coverage that may afford valuable financial protection (Chan & Elbel, 2012; McWilliams, Afendulis, McGuire, & Landon, 2011). In one study, Medicare beneficiaries who received help from others were more likely to enroll voluntarily in a Part D prescription drug plan, compared with those who did not receive help (Howell, Wolff, & Herring, 2012). The extent to which vulnerable individuals require or elect to delegate health insurance enrollment decisions to family members or trusted friends—as well as the associated time demands of assisting with these activities—has, to the authors’ knowledge, not been systematically studied. Even for individuals with a sophisticated understanding of healthcare insurance, the bureaucracy and inflexibility of our existing systems can be bewildering and infuriating. In Chapter  4, Jerald Winakur, a Texas-based geriatrician who was the caregiver for his mother following a brain-stem stroke that affected her abilities to swallow and talk, describes becoming highly frustrated when he was unable to get Medicare to pay for a continuous positive airway pressure (CPAP) machine to help his mother breathe because she did not have the specific diagnosis of obstructive sleep apnea. He lamented: Whatever one’s political leanings, whatever one’s bias is towards our nation’s disabled, elderly, and frail countrymen, I hope that we can agree that the current situation, wherein our government promises a benefit to those in need while simultaneously making that benefit unnecessarily difficult to obtain, is a calculated, cynical, and cruel approach. (2015, p. 42)

COMPLEX CARE MANAGEMENT DEMANDS (CHALLENGING MEDICATION SCHEDULES, DECISIONS, AND COSTS) RELATED TO CHRONIC ILLNESS The majority of individuals with chronic illness must manage not just one, but multiple conditions. It is a challenge then that the US healthcare reimbursement and delivery system is largely organized around the treatment of a single disease or condition. Despite consensus regarding what constitutes high-quality chronic care (Bodenheimer, Wagner, & Grumbach, 2002a, 2002b; Von Korff, Gruman, Schaefer, Curry, & Wagner, 1997; Wagner et al., 1996), the delivery of such care is largely elusive (Anderson & Knickman, 2001). The combination of increasing chronic disease prevalence and poorly organized healthcare delivery systems has been cited as a key driver of poor-quality care (Bernstein, 2011; IOM, 2001). Factors that contribute to the existing disease-focused and acute care paradigm include limited evidence to guide clinical decision making in the care of patients with complex health needs and multiple chronic conditions (Dhruva & Redberg, 2008; Van Spall, Toren, Kiss, & Fowler, 2007); the prevailing specialty-focus of physician professional education (Darer, Hwang, Pham, Bass, & Anderson, 2004) and the relative lack of interest in training in geriatric care among health professionals (for more details, see the section entitled “Workforce Issues” later in this

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chapter); an acute-care orientation in coverage decisions and reimbursement of services; an underdeveloped infrastructure to support coordination of services; and a fundamental disconnect between payment and delivery of medical care and long-term services and supports (American Geriatrics Society Expert Panel on the Care of Older Adults with Multimorbidity, 2012; IOM, 2008). The incontrovertible result is poor quality, fragmented, and costly care that too often fails to meet the needs, priorities, and preferences of patients (IOM, 2001). Ultimately, these deficits too often leave patients—and their families—alone and unsupported in navigating the complex service delivery environment and managing challenging treatment regimens. Self-management and care coordination may impose heavy demands. Because individuals and their family members must monitor and manage health on a daily basis, their ability to troubleshoot lifestyle challenges that often accompany chronic illness is an essential component to successful chronic care (Lorig & Holman, 2003). Services that foster problem-solving skills and the knowledge and motivation for self-management are poorly reimbursed through healthcare insurers (Anderson & Knickman, 2001; Vladeck, 2002). Adhering to dietary and physical activity regimens, managing prescribed medications, monitoring health status, maintaining stable emotions, and initiating early intervention when appropriate are the foundation of chronic care. However, health education, behavioral health services such as psychotherapy, and medication therapy are typically less generously reimbursed, and consequently they are less available within the context of routine primary care delivery (Anderson & Knickman, 2001; Wagner et al., 1996). Recent efforts to promulgate self-management skills through the disseminating of the Stanford Chronic Disease Self-Management Program have approached the program and program funding as a public health, rather than healthcare delivery, intervention (Ory et al., 2013). The interdependence of individual and family health and functioning are well established through empirical work and theory that places individuals squarely within broader family systems (Bowen, 1978; Hodges, Humphris, & Macfarlane, 2005; McDaniel, Campell, Hepworth, & Lorenz, 2005). The World Health Organization (WHO) characterizes family as “the primary social agent in the promotion of health and well-being” (1991). This role is borne out in studies demonstrating the relevance of supportive networks to self-management activities (Fisher & Weihs, 2000; The MacColl Institute, 2010; Rosland et al., 2008; Rosland & Piette, 2010). Interventions that enhance family caregivers’ skills, knowledge, and abilities to assist with disease- and context-specific activities have been shown to enhance care recipient well-being for specific conditions, such as stroke (Kalra et al., 2004), dementia (Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010), schizophrenia (Pitschel-Walz, Leucht, Bauml, Kissling, & Engel, 2001), and cancer (Northouse, Katapodi, Song, Zhang, & Mood, 2010). Because some components of these interventions or the delivery of these interventions typically are not covered by the prevailing healthcare reimbursement paradigm, successful models have not been widely diffused.

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ACTIVITIES THAT PERTAIN TO COORDINATING CARE Each specific chronic medical illness—much less co-occurring mental illness, addiction or substance use, cognitive impairment, and physical disabilities— involves distinct care needs that may precipitate involvement of specialized healthcare professionals. Healthcare payers reimburse specialty provider visits—but typically do not cover healthcare professionals’ time to communicate and coordinate care between specialists (Bodenheimer, 2008; Pham, Schrag, O’Malley, Wu, & Bach, 2007) or pay for time spent communicating with patients’ family caregivers. Because healthcare providers may prescribe conflicting or contraindicated treatments, patients with complex health needs are at risk for a range of adverse consequences, including undertreatment (McGlynn et  al., 2003; Redelmeier, Tan, & Booth, 1998), inappropriate treatment (Boyd et al., 2005; Wolff, Starfield, & Anderson, 2002), and preventable injuries and medical errors (Forster, Murff, Peterson, Gandhi, & Bates, 2005; Gandhi et al., 2003; Gurwitz et al., 2003). All too often, family members are left to fill health system gaps for patients who are unable to perform the necessary tasks to manage their own care (Allen & Ciambrone, 2003; Reinhard et al., 2012; Swan, 2012). Innovations to resolve health system deficiencies and improve the quality and continuity of care have been developed (Boult et al., 2009; Peikes, Chen, Schore, & Brown, 2009), although the evidence to support their effectiveness is weak (Bernstein, 2011; Peikes, Zutshi, Genevro, Parchman, & Meyers, 2012; Friedberg, Schneider, Rosenthal, Volpp, & Werner, 2014). Motivated by health reform, new models of care are evolving and diffusing throughout the healthcare system at an accelerated pace with the support of the Center for Medicare and Medicaid Innovation, newly formed by the Centers for Medicare and Medicaid Services (CMS). The foundational underpinnings of the Patient-Centered Medical Home include family engagement (Scholle, Torda, Peikes, Han, & Genevro, 2010; Stange et  al., 2010). The Accountable Care Organization is predicated on a philosophy of population health, and therefore is consistent with the inclusion of families as stakeholders and partners in care. However, quality measurement and payment policies do not currently delineate the responsibility of delivery organizations toward family caregivers or reimburse providers for actively engaging with and supporting family caregivers. Even with the more expansive focus of these models to incorporate “person- and family-centered care,” there has been relatively little emphasis on partnering with family care­ givers. One exception has been in the area of transitional care—care to facilitate the smooth transition of patients being discharged from hospitals to reduce hospital readmission rates (Coleman & Boult, 2003). A series of randomized trials has established the potential benefit of transitional care (Coleman, Parry, Chalmers, & Min, 2006; Jack et al., 2009; Naylor et al., 1999). None of the firstgeneration models explicitly described their protocol for partnering with family

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caregivers or evaluated the effects of transitional care for patients’ family caregivers. Recognizing these limitations, the United Hospital Fund of New York recently completed a large-scale, practice-oriented quality improvement initiative to identify feasible approaches and organizational infrastructure required to extend transitional care models to include family caregivers in decision making and provide them with relevant information, preparation, and training (Levine, Halper, Rutberg, & Gould, 2013).

EXPANDED EMPHASIS ON “PATIENT-CENTERED” CARE IN THE ABSENCE OF A GUIDING FRAMEWORK Patient-centered care has been described as the pinnacle of healthcare quality (Berwick, 2009). Defined as “care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions” (IOM, 2001), patient-centered care reflects the idea that patients and providers are engaged in continuous healing relationships grounded in trust (Epstein, Fiscella, Lesser, & Stange, 2010). By definition, patient-centered care embraces patients’ involvement in their care. Patients share information about their priorities and goals; providers educate, counsel, and empower individuals with the knowledge, skills, and confidence they need to manage their health. Although there is agreement about the importance of incorporating patient preferences, needs, and values in healthcare decision making, the process is not always straightforward. Engaging patients may be particularly challenging in the care of persons with impaired hearing, cognitive deficits, physical disabilities, or complex medical needs. Some people prefer a less active role when interacting with health professionals; others may prefer to delegate medical decisions to either a healthcare provider or to a family member or trusted friend (Legare et al., 2011; Levinson, Kao, Kuby, & Thisted, 2005; Price, Bereknyei, Kuby, Levinson, & Braddock, 2012). Family involvement has been defined as a property of patient-centered care (Gerteis, Edgman-Levitan, & Daley, 1993). However, there is an absence of theoretical clarity and best practice models that explicitly describe how health professionals should optimally support family involvement in patient care. For example, treatment burden is a meaningful domain to both patients (Eton et al., 2013; Tran et al., 2012) and family caregivers (Robinson, 1983; Zarit, Reever, & Bach-Peterson, 1980). Healthcare professionals have a responsibility to maximize benefits and minimize harms and burdens to patients in their care. Whether and to what extent healthcare providers are responsible for eliciting and acting on the needs of family caregivers of patients in their care is less clear (Adelman, Tmanova, Delgado, Dion, & Lachs, 2014; Mitnick, Leffler, & Hood, 2010). Ambiguity in how family caregiver perspectives relate to concepts, terms, and metrics that reflect optimal care has led to their perspectives as often excluded

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from mainstream quality measurement and metrics of provider performance. As one example, with the exception of its family member nursing home survey, the Consumer Assessment of Healthcare Providers and Systems exclusively assesses patient perspectives of the experience of health care. Recent national quality efforts acknowledge the broader social context in which many individuals manage their health. For example, the National Quality Strategy includes “Person- and Family-Centered Care” as one of its six priorities. The Institute for Patient- and Family-Centered Care defines patient- and family-centered care as “an approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families” with core concepts that include respect and dignity, information sharing, participation, and collaboration (Institute for Patient- and Family-Centered Care, 2010). Despite being conceptually represented in high-quality care, the inclusion of family caregiver needs and perspectives are often overlooked in practice, in part because healthcare insurers and providers view the legal beneficiary of services at the individual level (Gaugler, Potter, & Pruinelli, 2014). Family caregiving advocates have made specific recommendations for how to more routinely incorporate family caregivers’ perspectives and input in healthcare processes. Feinberg (2012) of the American Association of Retired Persons (AARP) Public Policy Institute has called upon healthcare professionals to assess family caregivers’ “information, care, and support needs, as well as their experiences of care.” Whiting (2014) of the National Alliance for Caregiving has proposed that “shared decision-making” refer to discussions between the patient, doctor, and family caregiver, and that it include caregivers in the healthcare team. Several recent initiatives build on these recommendations to more clearly support family caregivers for individuals with chronic and disabling conditions. For example, Rhode Island’s Family Caregiver Support Act of 2013 (2013-H5155, 2013-S-0615) requires a caregiver assessment as part of Medicaid LTC services and supports whenever the plan of care depends on a family caregiver for providing assistance with activities of daily living needs. Interpretative guidelines issued by CMS in 2013 that pertain to hospital discharge planning and its Conditions of Participation (S&C: 13-32-HOSPITAL) explicitly mention ascertaining family caregiver availability, willingness, and ability to assist patients who are being discharged from the hospital when patients do not have the ability to provide requisite self-care. Building on these guidelines, several states are working to pass the Caregiver Advise, Record, Enable (CARE) Act to require hospitals or rehabilitation facilities to (i) record the name of a family care­giver when a patient is admitted for treatment, (ii) notify the family care­ giver when the patient is discharged to another facility or released home, and (iii) to provide explanations and in-person instructions about the patient’s aftercare needs, such as providing wound care or medication management. The tension between patient privacy and shared information access for family caregivers is exacerbated by the individually oriented healthcare paradigm

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(Petronio, Sargent, Andea, Reganis, & Cichocki, 2004). The Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule offers guidance regarding the privacy of individual personal health information and provides individuals with the right to access information maintained about them. The Privacy Rule requires covered entities to afford patients’ designated personal representatives the same right of access to information as the patient, and permits covered entities to share identifiable health information relevant to a patient’s care with family members or friends who are involved in their care. However, anecdotal reports and qualitative studies indicate that family caregiver access to patient health information may be limited at times due to provider confusion or fear of litigation (Levine, Halper, Peist, & Gould, 2010; Levine et  al., 2013; Zulman, Piette, Jenchura, Asch, & Rosland, 2013). The Privacy Rule has been used to structure privacy policies of electronic health information exchange. The overwhelming emphasis of consumer e-health initiatives to date has been directed at providing patients secure access to their health information (Ricciardi, Mostashari, Murphy, Daniel, & Siminerio, 2013). Best practices or regulatory standards that pertain to proxy access to the patient portal have yet to be clarified by the Office of the National Coordinator for Health Information Technology (Sarkar & Bates, 2014).

SCARCITY OF HEALTH PROFESSIONALS WITH GERIATRIC EXPERTISE As noted in Chapter 6, the growing numbers of Americans attaining old age will create a pressing need for geriatric expertise among the healthcare workforce. Most clinicians receive little training in providing competent treatment for older adults with complex needs (IOM, 2008). Professional programs across all healthcare disciplines have been slow to address this problem. Articles and commentaries by individuals representing professional organizations in the disciplines of medicine, nursing, social work, and psychology express concern regarding inadequate numbers of health professionals with geriatric expertise to care for the aging US population (Bragg, Warshaw, Meganathan, & Brewer, 2010; Foundation, 2012; Meyers, 2006; Pace, 2014; Warshaw, Bragg, Layde, Meganathan, & Brewer, 2010). In Chapter 4, Winakur bemoans that few medical students are interested in geriatrics because of the demanding administrative requirements in order to receive Medicare reimbursement for medical services. Declining numbers of geriatric medical fellows in spite of increased financial support for fellowship training indicates more than short-term compensation may be needed to attract physicians to geriatric medicine (Langston, 2012). According to the Eldercare Work Force Alliance, less than 3% of medical students are exposed to coursework in geriatric electives, 5% of social work graduates complete a specialization in aging, and 3% of practicing psychologists devote the majority of their practice to older adults (Eldercare Work Force Alliance, 2014).

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Many professional organizations have articulated strong support for a more robust patient-family caregiver–healthcare professional partnership (Kelly, Reinhard, & Brooks-Danso, 2008; McDaniel et  al., 2005; Mitnick et  al., 2010; American Medical Association, 1993). Several influential texts and articles from the field of family medicine describe best practices in family systems thinking and techniques (Christie-Seely, 1984; Doherty & Baird, 1983). McDaniel and colleagues’ comprehensive book is notable in its life-course approach to familyoriented primary care. They state that “without considering the patient in his/her family context, the physician may inadvertently eliminate both a wider understanding of illness and a broader range of solutions,” and that the primary focus of health care is the patient in the context of the family (McDaniel et al., 2005). Despite the existence of family-oriented educational curricula and support for them by professional organizations, the dissemination of best practices lags (Yaffe & Jacobs, 2008). For example, although the American Academy of Pediatrics (2003) has embraced family-centered care as a foundational tenet of its field, it is often not integrated into pediatric clinical practice (Kuo et al., 2011). The American College of Physicians, the national guild organization for internal medicine, published a position paper alongside other professional organizations that offered ethical guidance for physicians to develop mutually supportive patient–physician–caregiver relationships (Mitnick et  al., 2010). However, the Accreditation Council for Graduate Medical Education (2013) “ACGME Program Requirements for Graduate Medical Education in Internal Medicine” makes scant mention of intervening with patients’ family members (directing internists to provide education and support) in a 35-page document that is otherwise highly detailed and comprehensive. The American Psychological Association (2014a) produced the “Caregiver Briefcase,” an informational website to increase psychologists’ expertise with family caregivers. Yet the American Psychological Association (2014b) “Guidelines and Principles for Accreditation of Programs in Professional Psychology” specifies no particular clinical content that programs must teach to be accredited. A minority of clinical psychology programs require students to study family therapy or other interventions of potential help to family caregivers. In fact, anecdotal reports and qualitative studies suggest that some healthcare professionals view family caregivers as “trouble” due to their advocacy on behalf of patients for additional time, information, resources, or respect (Levine & Zuckerman, 1999; Speice et al., 2000). In other circumstances, families may be valued for their ability to serve as knowledgeable informants or to communicate on behalf of patients who are incapacitated due to serious illness, cognitive or hearing impairment, or language barriers. Infrequent but controversial challenges arise when surrogate decision making is inconsistent with patients’ expressed wishes (Abadir, Finucane, & McNabney, 2011; Srivastava, 2010) and situations in which family caregivers engage in abuse (Dong & Simon, 2013). However, the most pervasive perspective that care providers often harbor

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toward family caregivers is perhaps indifference—or as an afterthought. The involvement of a family member is too often equated with adjunct support in the care of the patient—the assumption being that the family caregiver’s presence denotes a willingness and ability to assist with any given health-related need of the patient they are assisting (Levine et al., 2013).

FUTURE TRENDS Several converging demographic trends and changes in the broader services delivery environment will affect individuals with chronic and disabling conditions and family caregivers in the coming decades. Continued population aging and the coming “care gap”—the decreasing ratio of available family members to chronically ill and disabled older Americans (Redfoot, Feinberg, & Houser, 2013)—have the potential to escalate demand for both healthcare and LTC services, as well as exacerbate budgetary concerns that pertain to federal entitlement programs. Advances in healthcare technologies that continue to shift care toward outpatient and community-based delivery are likely to increase demands on family caregivers, some of whom may be older and managing health issues of their own, while remote monitoring devices facilitate greater independence and aging in place. Finally, delivery system and payment reform are now stimulating unprecedented innovation and collaboration across organizations that provide healthcare and long-term services and supports. How these shifting influences will affect family caregivers in the new normal is far from clear, but we venture to suggest the following: Pervasive challenges of caring for growing numbers of Americans with chronic disease and disability will make the family caregiving experience mainstream and will elevate public awareness of family caregiving as a societal issue that requires broader-based supportive solutions and strategies. Support for family caregivers will emerge as an issue of active discourse on the political agenda, along with proposals to ensure the future viability of entitlement programs. ● The transformation of healthcare and long-term services and supports away from delivering fee-for-service and toward delivering value and health will prompt greater attention to devising strategies that support and sustain the work of family caregivers. Healthcare organizations seeking to improve quality and efficiency of care will rethink workflows and processes in an attempt to better identify and prepare family caregivers with the information, knowledge, and skills that are necessary to undertake or oversee treatment regimens for patients with a range of diagnoses (e.g., dementia) and settings (e.g., in the hospital or as a part of the hospital discharge process) in recognition of the value that they bring to the care of patients with some of the most complex and costly health needs. ●

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Innovative collaborations that are now being formed to attain greater efficiency and reduce duplication of services for patients may be catalyzed to benefit family caregivers. Collaborations across the aging services networks, healthcare delivery systems, social service agencies, employers, community institutions, and payers will pave the way for new approaches to address the varied needs of family caregivers. For example, partnerships between large employers and local Area Agencies on Aging might emerge to produce community-based programs to support working caregivers. Greater integration of healthcare and social services will raise awareness of the benefits and make more feasible partnerships with family caregivers to promote more effective and proactive management of conditions to prevent potentially avoidable complications and expensive hospitalizations. ● Decreasing costs of novel technologies that allow remote monitoring of health and functioning will facilitate safer community living and greater independence with oversight of family caregivers and health professionals. Greater use of asynchronous electronic communication between family caregivers and healthcare/social service teams will reduce the time that family caregivers spend obtaining, managing, and coordinating health information. Web-based and telephone communications will make it possible to deliver empirically tested interventions to support family caregivers using more flexible approaches and multiple modes of communication. And robotic technologies and sensors—more sophisticated and mobile than those that exist today—will have a greater role in ensuring that home-dwelling consumers are safe and well cared for and that their family members are not overburdened. ●

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98  SECTION | II  Threats to Family Caregiving in the United States Howell, B., Wolff, J., & Herring, B. (2012). Medicare beneficiary knowledge of the Part D program and its relationship with voluntary enrollment. Medicare and Medicaid Research Review, 2(4), E1–E22. Hwang, W., Weller, W., Ireys, H., & Anderson, G. (2001). Out-of-pocket medical spending for care of chronic conditions. Health Affairs, 20(6), 267–278. Institute for Patient- and Family-Centered Care (2010). Retrieved 29.10.14. IOM (2001). Crossing the quality chasm. A new health system for the 21st century. Washington, DC: National Academy Press. IOM (2008). Retooling for an aging America: Building the health care workforce. Washington, DC: The National Academies Press. Jack, B. W., Chetty, V. K., Anthony, D., Greenwald, J. L., Sanchez, G. M., Johnson, A. E., et al. (2009). A reengineered hospital discharge program to decrease rehospitalization: A randomized trial [Randomized Controlled Trial Research Support, N.I.H., Extramural Research Support, U.S. Gov’t, P.H.S.]. Annals of Internal Medicine, 150(3), 178–187. Johnson, R., & Wiener, J. (2006). A profile of frail older americans and their caregivers. Washington, DC: Urban Institute. Kalra, L., Evans, A., Perez, I., Melbourn, A., Patel, A., Knapp, M., et al. (2004). Training carers of stroke patients: Randomised controlled trial. BMJ, 328(7448), 1099. Kane, R., Chen, Q., Finch, M., Blewett, L., Burns, R., & Moskowitz, M. (2000). The optimal outcomes of post-hospital care under medicare. Health Services Research, 35(3), 615–661. Kapp, M. (1991). Health care decision making by the elderly: I get by with a little help from my family. Gerontologist, 31(5), 619–623. Karraker, M. W., & Grochowski, J. R. (Eds.). (2012). Families with futures: Family studies in the 21st century (2nd ed.). New York, NY: Routledge. Kaye, H., Harrington, C., & LaPlante, M. (2010). Long-term care: Who gets it, who provides it, who pays, and how much? Health Affairs (Millwood), 29(1), 11–21. . Kelly, K., Reinhard, S., & Brooks-Danso, A. (2008). Professional partners supporting family caregivers. The American Journal of Nursing, 108(9 Suppl.), 6–12. . Kolomer, S. (2008). Grandparent caregivers [Review]. Journal of Gerontological Social Work, 50(Suppl. 1), 321–344. . Kowal, S. L., Dall, T. M., Chakrabarti, R., Storm, M. V., & Jain, A. (2013). The current and projected economic burden of Parkinson’s disease in the United States [Research Support, NonU.S. Gov’t]. Movement Disorders: Official Journal of the Movement Disorder Society, 28(3), 311–318. . Kramer, A., Steiner, J., Schlenker, R., Eilertsen, T., Hrincevich, C., Tropea, D., et al. (1997). Outcomes and costs after hip fracture and stroke. A comparison of rehabilitation settings. JAMA, 277(5), 396–404. Kuo, D. Z., Houtrow, A. J., Arango, P., Kuhlthau, K. A., Simmons, J. M., & Neff, J. M. (2011). Family-centered care: Current applications and future directions in pediatric health care. Maternal and Child Health Journal. . Laidsaar-Powell, R. C., Butow, P. N., Bu, S., Charles, C., Gafni, A., Lam, W. W., et al. (2013). Physician-patient-companion communication and decision-making: A systematic review of triadic medical consultations. Patient Education and Counseling. . Langston, C. (2012). Decline in geriatric fellows defies pay boost: +10% = −10%. Retrieved from: .

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FURTHER READING The MacColl Institute. (2010). The care model: Expanded chronic care model. Retrieved 12.12.10.