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Families Caring for an Aging America (2016)

Chapter: 6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports

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Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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6

Family Caregivers’ Interactions with Health Care and Long-Term Services and Supports

ABSTRACT: Building on the findings of the previous chapters’ descriptions of family caregivers’ roles and responsibilities, this chapter examines caregivers’ experiences in health care and long-term services and supports as they try to fulfill these roles. The committee concludes that despite their critical role, family caregivers of older adults are often marginalized or ignored by providers and systems of care. Yet, providers assume that caregivers are not only available but also skilled and knowledgeable enough to provide the tasks prescribed in older adults’ care plans. Numerous barriers impede systematic recognition and partnership with family caregivers, including payment rules that discourage providers from spending time to communicate with caregivers, misinterpretations of privacy regulations, and a health insurance model oriented to individual coverage. The chapter describes the opportunities for advancing high-quality care, focusing in four priority areas: (1) identification, assessment, and support of family caregivers in the delivery of care; (2) inclusion of family caregiver experiences in quality measurement; (3) supporting family caregivers through health information technology; and (4) preparing care professionals to provide person- and family-centered care.

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Although not formally recognized as such, family caregivers1 of older adults are often key players in health care settings and long-term services and supports (LTSS)—along with physicians, nurses, nurse practitioners, physician assistants, social workers, psychologists, pharmacists, home care aides and other direct care workers, hospice workers, physical and occupational therapists, and others. Chapter 3 described the varied roles that caregivers play in coordinating, managing, and indeed providing older adults’ health care and LTSS. Chapter 5 described the types of caregiver services and supports that have been tested and shown to be effective at improving caregiver outcomes. The focus in this chapter is on caregivers’ experiences as they try to fulfill their roles in today’s health care and social services settings. The objective is twofold: first, to describe how the “current paradigm” for providing health care and LTSS serves more as a barrier than facilitator for effective caregiver involvement in older adults’ care and, second, to review ways to move to a “new paradigm” of person- and family-centered care and services with the potential to optimize caregivers’ support of older adults. The latter includes four priority areas: systematic identification, assessment, and support of family caregivers; including both family and caregiver experiences in quality measurement; supporting family caregivers through health information technology; and preparing the health care and social services workforce to provide person- and family-centered care.

THE CURRENT PARADIGM AND ITS CONSEQUENCES

It is well established that health care in the United States is often of low value, poor quality, or results in harm (IOM, 2000, 2001, 2012b). The experiences of caregivers in advocating for older adults mirror the difficulties that many Americans face in obtaining high-quality, high-value health care services. Care delivery is fragmented; there is little, if any coordination between the health care and LTSS sectors; provider reimbursement policies discourage providers from taking the time to speak with individuals about their preferences, needs, and values; services are costly; and individual’s access to understandable and timely health information is often elusive.

In some ways, the challenges that individuals encounter in navigating the health care system are amplified for caregivers who are acting on behalf of an older adult. Under the status quo, care delivery simultaneously ignores and relies heavily on family caregivers to provide ongoing support to older adults with cognitive and/or physical impairments. There is a lack of shared understanding and expectations among older adults, family care-

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1 This report uses the terms “family caregiver” and “caregiver” interchangeably to refer specifically to family caregivers of older adults. See Chapter 1 for a definition of these terms.

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

givers, and providers regarding the roles and responsibilities of family caregivers. The current paradigm has significant negative consequences for all stakeholders—older adults, families, providers, and systems of care—and presents critical ethical challenges for providers (Barnard and Yaffe, 2014; Hinton et al., 2007; Mitnick et al., 2010). These consequences include impeding information sharing between family caregivers and providers of care (Crotty et al., 2015; Petronio et al., 2004), tense and adversarial health system interactions, and expensive and unwanted care that is inconsistent with older adults’ preferences (Abadir et al., 2011; Levine and Zuckerman, 1999; Srivastava, 2010). One national survey found that only one in three family caregivers (32 percent) reported that a doctor, nurse, or social worker had ever asked them about what was needed to care for their relative. Only half as many (16 percent) said a health provider had asked them what they needed to care for themselves (NAC and AARP Public Policy Institute, 2015a). Taken together these factors contribute to the emotional, physical, and financial distress of caregivers described in in the previous chapters (Adelman et al., 2014; Wolff et al., 2016b).

Family Caregivers and Systems of Care

In order to fulfill the numerous roles that they play (as Chapter 3 describes), family caregivers must interact with a wide range of providers and navigate within a variety of systems. For example, family caregivers often attend older adults’ medical visits with physicians (Wolff and Roter, 2008, 2011; Wolff and Spillman, 2014), facilitate the hospital discharge process (Almborg et al., 2009; Hickey, 1990; Levine et al., 2013), interact with home health care agency professionals and paraprofessionals after hospital discharge (Levine et al., 2006), and coordinate and deliver LTSS (Kaye et al., 2010; Newcomer et al., 2012). Although many older adults seek help from their family in making health care decisions (Price et al., 2012; Wolff and Boyd, 2015), there are few evidence-based strategies for effectively involving families in health care encounters.

Although some clinicians have attributed strained, concerned, or overprotective family caregivers as contributing to older adults’ risk for potentially preventable hospitalization (Davies et al., 2011; Freund et al., 2013), evidence to substantiate this relationship does not exist. In fact, the impact of specific caregiver characteristics on older adults’ health outcomes is limited and not well understood. As a result, little is known about what might be achieved by better integration and support of family caregivers.

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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The Impact of Family Caregivers on Older Adults’ Care

Table 6-1 provides examples of optimal family caregiver involvement in older adults’ care as well as barriers to their optimal involvement. For example, physicians, nurses, social workers, therapists, and other providers routinely initiate an encounter with a new patient by asking about their health history, the medications they are on, past diagnoses, previous treatments and surgeries, adverse reactions to any drugs, and so on. When family caregivers accompany an older adult, as they often do, they help provide or supplement this information particularly if the patient is forgetful or has dementia (Bookman and Harrington, 2007). The family caregiver may encourage the older person to ask questions and actively engage the provider, thus increasing his or her involvement in his or her own health

TABLE 6-1 Barriers to Optimal Caregiver Involvement in Older Adults’ Care

Aspect of Care Optimal Caregiver Involvement Barriers to Optimal Caregiver Involvement
Shared decision making When caregivers (CGs) prompt older adults to ask questions and tell a physician, nurse, social worker, or other provider their concerns, the provider may take more time to help resolve any confusion and, thus, foster decisions that best reflect the care recipient’s values and priorities. CGs can undermine older adults’ decision making if the CG inappropriately speaks for, interrupts, or criticizes the older adult during health care or social service encounters. Providers can likewise undermine decision making if they inappropriately direct their advice to the CG instead of the older adult—or when providers exclude CGs whose involvement is desired by the older adult.
Appropriate use of medications CGs can inform providers’ therapeutic advice if they help fill in missing details from older adults’ health history (e.g., current and past medications, allergies, past treatments). If providers ensure that CGs understand the appropriate use and potential side effects of medications, CGs can facilitate appropriate use and recognize adverse effects if they occur. CGs may not be able to access timely and accurate information about older adults’ prescribed medications—or may not receive adequate training to manage or administer them. As a result, they may unintentionally make medication mistakes, or they may not be able to detect medication errors or side effects.
Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
Aspect of Care Optimal Caregiver Involvement Barriers to Optimal Caregiver Involvement
Coordinated care CGs often play an integral role in arranging medical visits, coordinating home- and community-based services, facilitating older adults’ transitions between settings of care, and transmitting critical health and other information across settings of care. When CGs do not have access to up-to-date, understandable, and comprehensive information about care recipients’ health and treatments, they cannot coordinate older adults’ care and services effectively.
Assuring adequate personal care and safety CGs are the main providers of older adults’ personal care services and may also supervise LTSS provided by others. As such, they are critical to older adults’ safety and receipt of appropriate services. When CGs lack necessary skills, resources, or knowledge of care recipients’ treatments, they may unintentionally place older adults at heightened risk of adverse health events such as medication mistakes or failure to report emerging side effects.
Transitional care CGs can help ensure that critical information is transmitted correctly to new providers and care settings during transitions, monitor the appropriate delivery of services in the new care setting, and inform providers of symptoms or problems that arise. When CGs do not have access to up-to-date, understandable, and comprehensive information from providers, they cannot help ensure older adults’ safety and well-being during critical care transitions.
Emergency care CGs can help older adults avoid unnecessary emergency room visits—or help obtain emergency care when needed. Without adequate preparation, CGs may fail to recognize or act in emergency situations or overuse emergent care services when they are anxious.
Home safety CGs often arrange for modifications to older adults’ homes (e.g., ramps, grab bars) that prevent accidents and injury. When CGs are overwhelmed or lack resources, they may be unable to ensure that older adults are living in a safe environment.

NOTE: Shared decision making refers to older adults’ understanding of their choices and ability to make decisions with their care team to the extent that they want or are able.

SOURCES: Clayman et al., 2005; Greene et al., 1994; IOM and NRC, 2014; Ishikawa et al., 2005, 2006; Laidsaar-Powell et al., 2013; Silver et al., 2004; Thorpe et al., 2006; Wolff and Roter, 2011, 2012; Wolff et al., 2015, 2016a; Zulman et al., 2011.

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

care decisions (Clayman et al., 2005; Wolff et al., 2015). However, the caregiver may help or hinder the quality of communication with providers (Laidsaar-Powell et al., 2013; Wolff and Roter, 2011, 2012). For example, family caregivers who bring their own agenda to the visit, criticize the older adult, or dominate the conversation with the provider may diminish an individual’s participation in his or her own care (Clayman et al., 2005; Greene et al., 1994; Ishikawa et al., 2005, 2006; Wolff et al., 2015).

Reducing Health Care Utilization

The availability of a family caregiver is associated with fewer and shorter hospital stays for older adults (McClaran et al., 1996; Picone et al., 2003). The converse is true as well—complex family dynamics, providers’ unfounded assumptions regarding families’ ability to provide assistance, and caregiver burden and depression are also associated with delayed or otherwise problematic hospital discharges (Procter et al., 2001; Shugarman et al., 2002; vom Eigen et al., 1999; Wolff and Kasper, 2004), readmissions (Lotus Shyu et al., 2004; Schwarz and Elman, 2003), and more hospitalization (Dong and Simon, 2013).

Longitudinal descriptive studies have found that the availability of caregivers reduces home health care use and delays nursing home entry (Van Houtven and Norton, 2004). Using data from a nationally representative sample of older adults, Charles and Sevak (2005) also found that receiving a family caregiver’s help substantially reduces the risk of nursing home entry. These effects are strongest for adult children providing care to a single older adult (Van Houtven and Norton, 2008).

Moreover, as noted in Chapter 5, several randomized controlled trials have demonstrated that when older adults’ caregivers receive a standard assessment, training, respite, and other supports, caregiver outcomes improve. In addition, older adults’ nursing home placement is delayed, they have fewer hospital readmissions, decreased expenditures for emergency room visits, and decreased Medicaid utilization (Gaugler et al., 2013; Lavelle et al., 2014; Long et al., 2013; Mittleman et al., 2006). More recent findings from the Washington State Family Caregiver Support Program further suggest that providing screening and support for caregivers lowers overall use of Medicaid long-term care services (Lavelle et al., 2014; Miller, 2012). Additional research is needed to determine the associated cost savings (Gaugler et al., 2005; Lavelle et al., 2014; Miller and Weissert, 2000; Mittleman et al., 2006; Spillman and Long, 2009).

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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The Importance of Caregiver Assessment

Chapter 3 described how caregivers and the caregiving experience are uniquely individual. Caregivers may share many common experiences, but individual caregiver’s roles are highly variable and dependent on numerous factors that affect his or her availability, capacity, and willingness to assume critical responsibilities. Thus, providers cannot develop an individualized care plan for older adults—if a caregiver’s help is needed—without assessing or knowing who the primary caregiver is and what his/her capabilities are. As Chapter 5 finds, the most effective caregiver interventions begin with an assessment of caregivers’ risks, needs, strengths, and preferences. Research also suggests that primary care settings can be appropriate venues for assessing caregivers and providing them needed supports (Callahan et al., 2006; Burns et al., 2003).

A note of caution: caregiver assessments can have unintended consequences if they are used primarily to determine an older adult’s eligibility for services. Anecdotal reports suggest that agencies with limited resources have used the availability of caregivers to deny older adults services that they need and are eligible for.

Overall, these findings suggest that investments in family caregiver services and supports may generate savings in both health care and social services. However, there is much to learn. Despite research showing the benefits, providers, payers, and health care organizations have yet to establish mechanisms to capitalize on or optimize the role of caregivers in the health care of older adults. A workable mechanism for documenting the identity of the family caregiver in older adults’ medical records needs to be developed. For example, providers may need to create a new field in the demographic section of the electronic health record to capture caregiver information and also develop an alert to ask for updates at each new encounter.

The lack of research and investment in developing systems for routinely identifying, assessing, and engaging older adults’ caregivers is striking. Moreover, although important research by the Agency for Healthcare Research and Quality, Centers for Disease Control and Prevention, Centers for Medicare & Medicaid Services (CMS), Patient-Centered Outcomes Research Institute, National Institutes of Health, and other federal agencies is assessing the effectiveness of innovations in health care delivery and payment, most of these efforts do not explicitly involve family caregivers.

Decision Making

Older adults and their families confront a wide range of decisions in care delivery and planning for future care needs. Such decisions range from whether to adjust, stop, or start a prescribed medication, the selection of

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

alternative treatment options or procedures when confronting a major life event or diagnosis, whether to continue life-sustaining support, and making choices about residential care such as whether to move to a nursing home. A considerable research literature has focused on shared decision making in health care. Research on individual or family decisions regarding nursing home placement or other LTSS issues is scare. The term “shared decision making” is generally used to describe the process of communication, deliberation, and decision making in which one or more professionals

  • share information about testing or treatment options including severity and probability of potential harms and benefits and alternatives of options given individual circumstances;
  • elicit individual preferences regarding harms, benefits, and potential outcomes; and
  • engage in an interactive process of reflection and discussion until a mutual decision is reached about the subsequent treatment or plan of action (Braddock et al., 1999; Charles et al., 1999; Clayman et al., 2012; Dy and Purnell, 2012).

Given that the vast majority of individuals prefer to participate in decisions about their health (Chewning et al., 2012) and that optimal decisions rely on an understanding of care recipients’ values and priorities, strategies to engage people in their care have received great attention (Alston et al., 2014; Edwards and Elwyn, 2009; Fried, 2016; Stacey et al., 2012). Although the importance of family in older adults’ decision making is well appreciated (Price et al., 2012; Vladeck and Westphal, 2012), relatively little attention has been directed at developing interventions to support older adults and their family members when confronting difficult decisions (Garvelink et al., 2016). The gap in knowledge is significant given variability in individual preferences for participating in medical decision making (Brom et al., 2014; Kiesler and Auerbach, 2006; Levinson et al., 2005). Moreover, older individuals who lack the capacity to make informed decisions are likely to prefer or rely on the help of family members (Stacey et al., 2012; Wolff and Boyd, 2015).

Family involvement in decision making is distinct from patient–provider decision making in numerous ways. Such decisions may occur during the course of care when older adults and their family members communicate face to face with providers or they may occur during routine conversations, such as at the dinner table or in discussions among family members that do not involve the older adult. The decisions may be made in a crisis situation or over time.

Not all family members may share the same views or possess the same information to guide decision making, leading to disagreement or conflict

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

regarding the optimal course of care. Such differences in perspectives is an important feature of family involvement in care (Lobchuk, 2006; Urbanik and Lobchuk, 2009) as both older adults and families commonly value and expect family involvement in decision making, but that congruence regarding attitudes, decisions, and behaviors may be low (Kitko et al., 2015; Moon et al., 2016; Shin et al., 2013). As differences between older adults’ and family members’ perspectives are inversely associated with effective illness management and care planning (Brom et al., 2014; Kiesler and Auerbach, 2006; Kitko et al., 2015; Moon et al., 2016), strategies to more effectively involve and better support the role of family caregivers in decision making could be beneficial for both older adults and their family caregivers. The nuances and range of considerations in decision making vary widely by specific circumstances but the process and effects may be highly consequential. For example, the challenges of surrogate decision making have been widely documented and may include stress, anxiety, or emotional burdens that persist for years (Vig et al., 2007; Wendler and Rid, 2011; Whitlach and Feinberg, 2007).

Access to Older Adults’ Health Information

The Health Insurance Portability and Accountability Act (HIPAA) has provisions that govern access to an older adult’s health information by his or her family caregiver, other family members, or friends. The HIPAA Privacy Rule provides family caregivers three avenues of access to an older adult’s protected health information (HHS, 2016):

  • First, every state allows people to designate a “personal representative” via a health care advance directive (health care power of attorney). If the person has not designated a representative, most states have a statute that determines the process for identifying an authorized surrogate decision maker. If the person lacks the capacity to manage his or her affairs, a guardian may be appointed through judicial proceedings.
  • Second, people can name the individual with access to their protected health information through a formal HIPAA authorization document or a signed “directed right to access.”
  • Third, if there is no formally appointed representative or authorized surrogate, health care providers can share a person’s information with a family caregiver if (a) the person gives permission; (b) the person is present and does not object; or (c) the person is not present and the provider determines that it is in his or her best interest to share the information. In these discretionary disclosure situations, the Privacy Rule directs providers to limit the disclosed
Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

information to that which the involved third party reasonably needs to know about the person’s care or payment.

It appears that the HIPAA Privacy Rule is commonly misinterpreted as a barrier to caregivers’ access to older adults’ health information (Levine, 2006). Although there is no published research on the impact of HIPAA on older adults and their caregivers, anecdotal reports suggest that many providers misunderstand the law and its regulations. Providers may tell caregivers that they cannot share any health information even when the individual older adult has authorized it. Or, providers may be overly restrictive in discretionary disclosures. Institutional culture may also affect the sharing of information with caregivers.

See Appendix H for further details regarding HIPAA and caregivers’ access to older adults’ protected health information.

COMMITTING TO A NEW PARADIGM: PERSON- AND FAMILY-CENTERED CARE

The National Strategy for Quality Improvement (“The National Quality Strategy”), developed by the U.S. Department of Health and Human Services (HHS), calls for more transparent, accountable, and higher quality care through broad partnerships that extend beyond individual providers and settings and that actively involve individuals and their families (HHS, 2013). The strategy also calls for using quality measures to help achieve person- and family-centered care. However, this vision is not reflected in current approaches to quality measurement or care delivery and financing reform efforts.

The quest for higher quality and more affordable care has led to a growing appreciation of the impact of the broader social and physical environments in which individuals are born and their lives unfold. The World Health Organization has characterized family as “the primary social agent in the promotion of health and well-being” (WHO, 1991). As providers, payers, and society work toward higher value systems of care to support population health, the need has never been greater for delivery systems to more effectively partner with and support family caregivers of older adults with complex needs.

The committee agreed that a new vision for health care and LTSS—in which family caregivers are better supported in the care of older adults—is needed now. This vision, described in Chapter 1, requires fundamental change in the delivery of health care and LTSS, including a reorientation of care systems to a focus on family-centeredness. Family-centered care has been variably defined, but is best characterized by the National Quality Forum (NQF) as

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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an approach to the planning and delivery of care across settings and time that is centered in collaborative partnerships among individuals, their defined family, and providers of care. It supports health and well-being by being consistent with, respectful of, and responsive to an individual’s priorities, goals, needs, and values. (NQF, 2014a p. 2)

The core concepts of person- and family-centered care, illustrated in Figure 6-1, include the support and involvement of family, as defined by each individual (NQF, 2014a). The “care team” is defined as including individuals, families, and the health care and supportive services workers who interact with individuals. Person- and family-centered care recognizes that many people—including older adults—desire or require the involvement of family members or trusted friends to obtain health and supportive

Image
FIGURE 6-1 Core concepts of person- and family-centered care.
SOURCE: NQF, 2014a.
Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

services, to meet health system demands, to communicate with providers, to make health care decisions, and to help with daily health-related and other activities of daily living (Feinberg, 2012; Price et al., 2012; Torke et al., 2012; Wolff and Boyd, 2015). NQF notes that the concept of “family” specifically addresses involvement in care and need for support, but that all the core concepts extend to the family, especially when individuals are those for whom decisions must be made in full or in part by surrogates (NQF, 2014a).

Table 6-2 describes five domains of person- and family-centered care. It notes the distinction between person-centered and person- and family-centered care and emphasizes that the family should not simply be viewed as a “resource” for a particular individual, but rather as individuals who themselves may need information, training, or support (Feinberg, 2012).

TABLE 6-2 Elements of Person- and Family-Centered Care

Element Implications for Care Delivery
Respect and dignity for the older person and family Health and social service professionals listen to and honor the person’s and family’s needs, values, preferences, and goals for care.
Recognition of the whole person Emphasizes the person’s and the family’s well-being, taking into account physical and mental health, spiritual and cultural traditions, social supports, and engagement with community.
Assessing and addressing both the individual’s and family caregiver’s information, care, and support needs and their experience of care A plan of care reflects the goals, values, and preferences of the person and his or her family. The plan of care is based on wants and needs that are meaningful to the person and the support needs of family members or friends to enable them to continue to provide support without being overstressed.
Promotion of communication, shared decision making, and empowerment The individual, family, and providers have access to timely, complete, and accurate information and tools to make shared and informed decisions and plan for future needs that respect individuals and families.
Emphasis on coordination and collaboration across settings of care Collaborative care integrates families in the care team, engaging them as partners in care, and providing tools for family caregivers themselves. Care and supportive services are accessible, comprehensive, continuous over time, and coordinated across providers and settings.

SOURCE: Feinberg, 2012.

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

Elevating the family alongside person-centered care in health delivery reform will require identifying involved family caregivers; assessing their capabilities; addressing their needs for education, training, and supportive services (e.g., counseling, respite care); and facilitating their involvement in delivery processes. Opportunities exist within the uptake of electronic health records to better capture people’s health care encounters, and to incorporate person-reported and family-reported measures in clinical care. Likewise, accreditation activities related to the Patient-Centered Medical Home and Accountable Care Organizations involve documenting core elements of quality care processes, with commensurate measurement opportunities. Person- and family-centered care is a natural link between delivery innovations and the major priorities of the National Quality Strategy (National Priorities Partnership, 2011). Opportunities for the inclusion of family caregivers exist in numerous federally sponsored demonstrations, contracts, and payment reforms, yet practical approaches for inclusion and engagement of family caregivers remain poorly defined.

The need to explicitly clarify and support family caregivers in care delivery has never been greater. Transforming delivery processes so as to purposefully recognize, involve, and address the needs of family caregivers will not be a simple process, but the potential benefits to older adults and their family caregivers could be significant. Achieving this report’s vision will, at a minimum, require acknowledging that older adults and family caregivers are often interdependent and that current delivery systems rely too much on family caregivers in some areas, while too little in others. Addressing these issues will require stakeholders to be catalysts for broad-based change. To this end, the committee identified four priority areas for action:

  1. Identification, assessment, and support of family caregivers in the delivery of care
  2. Inclusion of both family and caregiver experiences in quality measurement
  3. Supporting family caregivers through health information technology
  4. Preparing care professionals to provide person- and family-centered care.

Identify, Assess, and Support Family Caregivers in the Delivery of Care to Older Adults

A pivotal first step toward supporting family caregivers will be a sustained effort to assess and address caregiver needs. Systematic identification of caregivers is an essential part of delivering care to older adults in virtu-

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

ally every setting. To make this happen, documenting when older adults need a family caregiver to enact their care plan should become routine. Caregivers’ contact information should be collected as a regular part of the medical record and in the care planning process for LTSS. The purpose should be to not only support appropriate care by professionals, but to serve as a mechanism for identifying caregivers who serve in critical and demanding roles. Caregivers may also be identified directly (and their data similarly recorded) through their own interaction with the system, including annual wellness exams, visits to physicians and other health care providers, and both admissions and discharges from hospitals and emergency rooms. Fundamental to the improvement of caregiving will be the development and adoption of caregiver assessment tools that can be used in practice. Without such tools it is very difficult to determine what roles caregivers can and cannot accomplish, how to appropriately engage them as team members in care and treatment, and how to best meet their own health and support needs.

The organization, delivery, and financing of health care and LTSS are designed to provide needed services to individuals not families. Yet older adults who rely on a family caregiver by definition need help to successfully navigate the complex service delivery environment or manage daily care needs. When older adults rely on a family caregiver to engage in health care decision making or enact their treatment or personal care plan, identifying the presence and ensuring the capacity of the family caregiver is foundational to quality care (FCA, 2006; McDaniel et al., 2005; NQF, 2014b). Stated differently, when family caregivers and older adults are engaged in a reciprocal and interdependent relationship, delivery of care benefits from a broader orientation that recognizes that the older adult and family caregiver together constitute a “unit of care,” as articulated in the concept of person- and family-centered care (NQF, 2014a,b). Reorienting service delivery to reflect this reality will require the adoption of processes throughout the health care and LTSS systems to systematically identify, assess, engage, and support family caregivers, including talking with caregivers directly to better understand and address their needs, problems, resources, and strengths.

Paying for Recognition, Involvement, and Support of Family Caregivers

As the predominant payers of care for older adults, Medicare and Medicaid payment and regulatory policies are critical to motivating and changing provider practice. Private payers that provide supplemental coverage to Medicare beneficiaries also have a role in creating incentives for providers to engage caregivers. Some recent innovations in Medicare and Medicaid provide the potential, although quite limited, for family- and person-centeredness in coverage, payment, and delivery of

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

services (see Table 6-3). Recent updates to hospital conditions of participation, for example, encourage engagement and support of family caregivers in the discharge planning process. New integrated care models, such as the Financial Alignment Initiative, promote better coordinated care and support family caregivers of older adults who are dually eligible for Medicare

TABLE 6-3 Selected Examples of How Medicare and Medicaid Provide Incentives for Person- and Family-Centered Care for Older Adults

Incentive Description
Annual wellness visit A Medicare benefit; offers coverage for providers to evaluate and document beneficiaries’ demographic characteristics, family history, self-assessed health status, psychosocial and behavioral risks, and functional status.
Balancing incentive program A financial incentive for state Medicaid programs; provides an enhanced federal match to states spending less than 50 percent of long-term services and supports care expenditures on home- and community-based settings and that implement structural changes, including use of a core standardized assessment instrument. Family caregiver assessment is recommended, but not required in core standardized assessment.
Medicare billing codes Several new billing codes can be used by specified fee-for-service providers to bill Medicare for services that may involve contact with family caregivers. CPT code 99490 (Chronic Care Management Services) covers non-face-to-face care coordination services (e.g., by telephone, secure messaging, or Internet) for beneficiaries with two or more chronic conditions (including time spent communicating with family caregivers). CPT codes 99495 and 99496 (Transitional Care Management Services) cover providers’ time spent communicating with family caregivers by phone, e-mail, or in person (within 2 days of discharge from an inpatient facility) during the beneficiary’s transition from an inpatient stay to a community setting. CPT codes 99497 and 9948 (Advance Care Planning Services) cover face-to-face conversations with family members regarding advance directives.
Financial alignment initiative States may elect to establish integrated care models that promote care coordination for dually eligible Medicare and Medicaid enrollees. Some models allow for the involvement of caregivers, use caregiver surveys to assess satisfaction (e.g., Consumer Assessment of Health Care Providers and Systems or CAHPS), and encourage family members/caregivers to participate in the care and evaluation process.
Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Incentive Description
Home- and community-based services (HCBS) A financial incentive for state Medicaid programs; HCBS programs may cover respite care, caregiver education and training, environmental modifications, bereavement services, family counseling, and other services that facilitate community living. States must provide for independent assessments of care recipients that include the need for physical, cognitive, or behavioral services and supports; strengths and preferences; available services and housing options; and whether an unpaid caregiver will provide any elements of the person-centered service plan (if yes, a caregiver assessment is required).
Home health Skilled nursing care and medical social services provided by home health agencies to Medicare beneficiaries can include caregiver supportive services (e.g., teaching/training activities that require skilled nursing personnel to teach a beneficiary’s caregivers how to provide the treatment regimen).
Hospice benefit A Medicare benefit that includes counseling to patient and family caregiver for loss or grief counseling, respite, and a medical social worker to facilitate effective palliation and management of a patient’s illness or related condition. Continuous home care is available under certain conditions when the caregiver is unable or unwilling to continue to provide a skilled level of care for the patient.
Hospital discharge planning The Centers for Medicare & Medicaid Services (CMS) set Conditions of Participation (COPs) that health providers must meet to be eligible for payment under the Medicare and Medicaid programs. CMS provides interpretative guidelines for meeting COPS to promote better individual outcomes (they are not required for compliance, however). The guidelines for hospitals emphasize the importance of engaging both the individual and family during hospital discharge planning.
Innovative payment and delivery models Financial incentives for providers; eligible providers and other entities can receive awards if they meet specified standards for high-quality and coordinated care for a particular population. Some standards may implicitly encourage providers to actively engage caregivers as a resource in the care delivery process. CMS is testing these models to inform potential changes in health care payment rules.
Meaningful use criteria CMS criteria for how providers use electronic health records, including the information and functionality that is available to individuals.

SOURCES: Alley et al., 2016; CMS, 2013, 2014, 2015, 2016; Justice et al., 2014; Komisar and Feder, 2011; Mission Analytics Group, 2013; Rajkumar et al., 2014.

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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and Medicaid. Other CMS initiatives, such as the Transitional Care Management Services Program and innovative payment and delivery models, implicitly encourage providers to actively engage or support caregivers (Alley et al., 2016; Komisar and Feder, 2011; Rajkumar et al., 2014).

Medicare

In 2015, Medicare introduced a billing code that physicians, clinical nurse specialists, nurse practitioners, and physician assistants may use to be paid for non-face-to-face care coordination services for beneficiaries with multiple chronic conditions (CMS, 2015). Providers can use the code to provide 20 minutes (per month) of care management services including time spent communicating with the beneficiary’s caregiver. It is a small step toward formal recognition of the value of involving family caregivers in older adults’ care. However, CMS requires that the 20 minutes of service include numerous mandatory components and providers appear to be unaware that the code is available. Moreover, because Medicare payment is intended to reimburse for the beneficiaries’ care only, it does not cover the supports that caregivers often need. Providers cannot bill, for example, for a comprehensive assessment of caregivers’ needs (Gitlin et al., 2010). In addition, if the care recipient’s treatment is completed, the provider cannot bill for any additional supports that the caregiver needs.

As this report went to press, CMS was finalizing a set of proposed revisions to Medicare regulations governing the home health benefit (CMS, 2014). The proposed revisions would require home health agencies to identify the care recipient’s primary family caregiver, develop the Medicare beneficiary’s plan of care in partnership with not only the older adult but also the caregiver, include education and training for the caregiver specific to the older adult’s needs in the plan of care, and other measures involving caregivers.

Medicaid

The Medicaid program has a significant role in the financing of LTSS (Favreault and Dey, 2015). In contrast to Medicare, Medicaid recognizes the role of family caregivers in care planning and delivery in some circumstances (Newcomer et al., 2012; O’Keefe et al., 2010; Sands et al., 2012), particularly with respect to the delivery of home- and community-based services (HCBS) (Kelly et al., 2013; Miller, 2012). For example, federal law requires that state Medicaid HCBS waiver programs include a plan of care that could include the role of caregivers, although states have considerable latitude regarding the specific components of the care plan. Only about 30 percent of states require an assessment of family caregivers’ needs (Kelly

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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et al., 2013). In these states, the information that is collected from the family caregiver affects the individualized care plan for the Medicaid beneficiary and is also used to connect family caregivers to services and supports to meet their own needs. Questions posed in the family caregiver assessment may address domains such as family caregivers’ skills, abilities, knowledge, or training needs to assist the Medicaid beneficiary; questions directly asked of the family caregiver to assess his/her well-being (e.g., self-rated health and a depression screen); and resources that the family caregiver can choose to use to address support needs of the caregiver.

In 2014, CMS released a new rule on community living for Medicaid HCBS programs. For the first time, CMS required that family caregivers’ needs be addressed if their involvement is part of the care plan for persons with disabilities. However, only the 1915(i) HCBS state plan option has the new requirement for caregiver assessment (Feinberg and Levine, 2015). Moreover, anecdotal reports suggest that some state Medicaid-managed care organizations often compel unpaid assistance from a family caregiver even though federal rules require that unpaid supports be provided voluntarily (Carlson, 2016).

One example of state policy change through Medicaid is Rhode Island’s Family Caregivers Support Act of 2013. The Act requires a family caregiver assessment if the Medicaid beneficiary’s plan of care includes a role for the family caregiver. If a family caregiver is involved, the plan of care must address the needs of both the care recipient and the family caregiver.

As discussed in Chapter 5, individuals who need LTSS who are enrolled in Medicaid may self-direct personal care through HCBS waiver programs or personal care optional benefits, including the hiring of relatives, friends, or independent providers whose compensation is covered by the Medicaid program. Needs assessment and service planning are critical processes used to safeguard participant health and welfare and to ensure that services and supports enable participants to meet individual community living goals. States have considerable latitude in establishing the process and qualifications to ensure that providers possess necessary competencies and skills. States also increasingly require individuals who would provide personal care services to undergo background checks against abuse/neglect registries (Galantowicz et al., 2010). Little information is now available about how states evaluate qualifications of family caregivers who are paid personal care attendants, although the 2013 National Inventory Survey on Participant Direction reported that about one-third of programs require certification and that about half of programs require training of workers in skills or knowledge such as cardiopulmonary resuscitation or HIPAA (NRCPDS, 2014).

Some policies of state Medicaid programs may undermine effective caregiving (Carter, 2015). Federal Medicaid person-centered care planning

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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rules require written service plans identifying not only the services a beneficiary will receive, but who will provide them—whether they are family caregivers or Medicaid-financed paid care. Some regulations also specify that family-provided services should be voluntary. In practice, however, some states or managed care plans reduce Medicaid-provided services based on the presence of a family caregiver, also referred to as “natural supports” (Sands et al., 2012).

Despite attention to policies and services that recognize, support, and compensate family caregivers, Medicaid policy still falls short of commitment to a systematic approach to person- and family-centered care that takes into account the needs of both the care recipient and the family caregiver—at either the state or federal level. A meaningful approach would—at a minimum—entail requirements for caregiver assessment in all HCBS options (as well as for the managed care plans that increasingly provide them) for care plans that depend on family caregivers for their enactment. A meaningful commitment to the identification and support of family caregivers would also involve oversight and review of assessment tools to assure their appropriateness and effectiveness in serving both beneficiaries and caregivers.

Administration for Community Living

Chapter 1 described the federal programs that are relevant to the adequacy of caregiver support albeit on a much smaller scale. The Administration for Community Living, for example, oversees several programs that support family caregivers. The largest is the National Family Caregiver Support Program, which distributes about $150 million to states and territories to provide caregivers with information, help in accessing services, individual counseling, education, respite care, and other services. Some states have also moved forward in supporting the assessment of family caregivers through state-funded support programs. For example, in 2012, Washington state increased its funding for the Family Caregiver Support Program by $3.45 million to expand eligibility and to increase the level of services for caregivers including more comprehensive assessment of their needs. A legislatively mandated evaluation of the expanded program found that it delayed the use of Medicaid long-term care services (Lavelle et al., 2014).

Many states have enacted legislation to raise awareness and better support family caregivers. For example, the Caregiver Advise, Record, Enable (CARE) Act, now law in 29 states, mandates that the name of the family caregiver is recorded when an individual is admitted to a hospital or rehabilitation facility, that the family caregiver is notified at the time of discharge, and that the family caregiver is afforded an explanation and is given instruction prior to discharge of medical tasks he or she is expected

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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to perform at home. CARE Act legislation is being considered by many other states as well.

Identify, Assess, and Support Caregivers: Conclusions

Although recent policy initiatives have created incentives for stronger partnership with family caregivers, initiatives stop short of making an explicit commitment to systematic identification and meaningful support. The implications of available knowledge and the principles of good practice support the importance of identifying, assessing, and addressing the main concerns that family caregivers are a necessary and essential part of working with older people in all care settings. In light of available knowledge and existing infrastructure, making a commitment to systematically identify and explicitly support family caregivers will require purposeful attention in the reform of federal entitlement programs and state benefit programs, as well as significant investment to develop and broadly implement metrics, tools, and policies that facilitate systematic identification, assessment, and support of caregivers in payment and delivery of care. Investments in research will be needed to determine how to identify at-risk older adults and family caregivers who are likely to benefit from assessments, as well as how to appropriately distinguish and address older adults’ needs from those of their caregivers. Investments in performance measures will be needed to make possible the inclusion of family caregivers’ perspectives on and experiences with care. Investments will need to be made to enhance health information technology and to expand provider competencies to recognize and support family caregivers by facilitating appropriate information disclosure of an older adult’s health information when the involvement of a family member is desired by the older adult or required to enact the individual’s care plan. Although changes to organizational culture and provider workflows are not inconsequential, the financial outlays required to bring about these changes are likely to be relatively modest. Although subsequent sections of this chapter address these topics in greater detail, these activities collectively rest on the ability to identify family caregivers who are now largely invisible in systems of care.

Establishing approaches to systematically identify and meaningfully support family caregivers will require resources and motivation to undertake changes in provider practice. Financing arrangements could reward providers for the explicit identification and support of family caregivers. Likewise, performance standards should hold providers accountable for supporting family caregivers when the plan of care rests on their involvement. Achieving the vision laid out of involving family caregivers in care will require that changes be made to clarify HIPAA regulations and guidance so as to support, rather than inhibit, appropriate information exchange

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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and communication among providers, caregivers, and care recipients. Care coordination, especially in new Medicare and Medicaid payment mechanisms designed to pay for it, should encourage referrals that enable caregivers to access LTSS and other social supports through Area Agencies on Aging and other agencies.

Inclusion of Family Caregiver-Reported Experiences in Quality Measurement

Recent initiatives to reward the provision of high-value care have elevated the prominence of performance measurement in care delivery and payment reform. The Institute of Medicine report Vital Signs: Core Metrics for Health and Health Care Progress found that thousands of performance measures are now in use to assess the quality of care delivery (IOM, 2015). Although the report concluded that many measures provide useful information, the large number and lack of focus, consistency, and organization were recognized as limiting effectiveness in measuring and improving health system performance. Against this backdrop, there is a growing appreciation that the utility of performance measures rests on measuring elements of care that matter, that are outcomes oriented, and that reflect system performance (Blumenthal and McGinnis, 2015). For those with complex care needs or multiple chronic conditions, technical quality may not align with the care or outcomes that matter most based on individual values, priorities, and goals of care (Boyd et al., 2005; Lynn et al., 2015). For older adults with significant and complex needs, performance measures should encompass person- and family-centered care in recognizing goals of comfort, the care setting of choice, and preferences for actively engaging or delegating care to others (NQF, 2014a; Wolff and Boyd, 2015). For many older adults, high-quality care involves supporting their family caregivers—by respecting their values and preferences without imposing financial burden, physical strain, or undue anxiety regarding lack of experience or knowledge to perform tasks expected of them.

Although the number of health care performance measures has dramatically increased in recent years, so too has recognition of the gaps of existing measures in important domains of quality. Although the field is rapidly evolving, the perspectives of family caregivers have not been extensively included in performance measurement to date (Gage and Albaroudi, 2015). In light of existing measurement gaps, HHS contracted with NQF to conduct environmental scans, identify priority areas for potential measures and measurement concepts, and develop multistakeholder recommendations for future measure development and endorsement. A theme throughout this work is that it is both individuals and families who engage in the planning, delivery, and evaluation of care across all levels of performance

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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measurement. For example, work by NQF conceptualizes support and involvement of family as a core concept of person- and family-centered care (NQF, 2014a), and support of caregivers as an overarching theme for performance measurement in the care of persons with Alzheimer’s disease and related disorders, as well as crosscutting measures that span any given disease category (NQF, 2014b).

As core measures are identified to assess the performance of the health care system, a similar effort is underway with respect to LTSS. A 2-year process to prioritize opportunities to address gaps in HCBS quality measurement is now underway (NQF, 2015). A conceptual framework has been agreed on by a multistakeholder committee that includes Caregiver Support as 1 of 11 measurement domains. In its description of this domain, financial, emotional, and technical support are listed as examples of measures that apply to both paid and unpaid caregivers. Other characteristics that fall under the Caregiver Support domain include caregiver assessment, training and skill building, respite care, and supports for well-being.

Although the inclusion of caregiver measures is increasingly supported in principle, the development, validation, and endorsement of such measures will require resources and prioritization. For these reasons, the committee urges HHS to establish a process for identifying, prioritizing, and harmonizing caregiver-related measures across sites and models of care. This effort will be important to achieving better outcomes for the care receiver and caregiver, as well as for improving system properties that influence quality and efficiency of care delivery. Moreover, consensus processes for measure identification, selection, and prioritization takes time—years in many instances. The inclusion of caregiver perspectives in performance measures would send a strong signal to providers that for some older adults—especially those with complex care needs—caregivers are a key element in care planning and delivery, and that their experiences provide important insight in the quality of service delivery.

Supporting Family Caregivers Through Health Information Technology

Health information technology (IT) is now being widely diffused throughout health care delivery systems due in part to its promise of promoting more timely, accurate, and transparent exchange of information, improved quality and efficiency of care, and more active involvement of individual and family “consumers” (Hsiao et al., 2013; Kellermann and Jones, 2013). One broad class of these technologies includes systems that enhance the efficiency and coordination of care, including the integration of health care with LTSS services. For example, the IEP (Information Exchange Portal) is a recently developed electronic platform designed to facilitate seamless integration across social and health systems. Specifically, the system integrates critical clinical and social data (individual support needs) to

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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predict adverse events in vulnerable people and help facilitate the delivery of targeted interventions.

A second broad class of health IT is directed at the consumer to facilitate access to health information and services, involvement in health management activities, and health decision making (Bobinet and Petito, 2015). These technologies include secure Internet portals that are tethered to the individual’s health information in electronic health records (EHRs), personal monitoring devices, secure e-mail messaging between consumer and health care providers, and Internet-based resources for health education, information, and advice. The Office of the National Coordinator for Health Information Technology defines consumers to include individuals, their families, and other caregivers (Ricciardi et al., 2013).

EHR vendors and care providers have focused primarily on increasing the older adult’s registration for and use of patient portals. The role of family members and friends in the use of these systems has not been well defined. Many EHR vendors support functionality to allow individuals to explicitly share access to their patient portal account with family members or friends through a consumer-facing “proxy” portal. The U.S. Department of Veterans Affairs, for example, is currently modifying “My HealtheVet” to allow veterans to delegate electronic access to a caregiver.2 National information about provider adoption and consumer uptake of shared access to the proxy portal is limited, but suggests it is far from widespread (Osborn et al., 2011; Sarkar and Bates, 2014; Wolff et al., 2016a). Implementation barriers to proxy portal registration are numerous and include lack of availability (e.g., limitations on who may register for the proxy portal [e.g., Kaiser restricts registration for the proxy portal to Kaiser members]) (Sarkar and Bates, 2014); lack of transparency in registration processes; poor awareness that the proxy portal exists (Zulman et al., 2013); lack of technology skills and usability difficulties (Czaja et al., 2014); and lack of understanding of benefits to justify the effort of initiating and navigating proxy portal registration protocols. Variability in state privacy laws (Pope, 2012) and provider implementation decisions may also influence consumer uptake of a proxy portal (PSTT, 2014; Strong et al., 2014). In one survey, nearly half (48.6 percent) of family caregivers reported that health system privacy rules and restrictions were the most common barrier to their using technology to access care recipients’ health information (Zulman et al., 2013).

Although most people want control over their electronic health information, preferences for sharing personal information vary widely (Caine et al., 2015; Zulman et al., 2011). Current technology allows people to select

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2 Information about the My HealtheVet program is available at: https://www.myhealth.va.gov/index.html (accessed August 23, 2016).

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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who has permission to access their electronic health information as well as the limits of that access (Leventhal et al., 2015; Osborn et al., 2011; Tierney et al., 2015; Zulman et al., 2011). For example, someone might authorize a paid caregiver to schedule appointments or refill prescribed medications but bar his or her access to personal health information. In one survey, veterans were twice as likely to support allowing someone to request prescription refills (87 percent) than to communicate with health care providers (40 percent) on their behalf (Zulman et al., 2011). Giving older adults the option to authorize a family caregiver’s access to their electronic health information would facilitate the caregiver’s engagement and management of their care (Wolff et al., 2016a).

Several issues will require careful attention if family caregivers are to be more widely and purposefully engaged in the use of patient portals of EHRs. First, system designers and vendors should better accommodate the reality that individuals’ information-sharing preferences are nuanced and evolve over time (Caine and Hanania, 2013; Crotty et al., 2015). Second, designers should incorporate user-centered design principles in system design to develop shared access functionality that better reflects caregiver and individual preferences (Nath and Sharp, 2015). Third, best practice implementation strategies are needed to guide provider policies and processes for credentialing and registering family members to access their older relatives’ health information. To this end, the Office of the National Coordinator for Health Information Technology is well positioned to disseminate best practices through education and outreach via Regional Extension Centers, through HIT.gov, and by partnering with professional societies and credentialing organizations. Finally, organizations and federal and state governmental agencies tasked with monitoring the implementation and use of consumer-facing health information technologies should provide equal weight and attention to individual and family adoption in tracking diffusion and use. Accreditation organizations such as the National Committee for Quality Assurance should incorporate proxy portal availability and rates of registration for particular subgroups (e.g., persons with dementia) or programs (e.g., individual-centered medical homes) to serve as quality measures that pertain to person and family engagement. Adoption of a secure online identity ecosystem to guarantee private credentials, now in development (White House, 2011), could also facilitate broader electronic credentialing and registration of family caregivers.

A third category of technology-based systems that is potentially useful for family caregivers as well as health care providers is embedded in-home activity-monitoring systems with unobtrusive sensors that can track behaviors, such as movement patterns (e.g., trips to the bathroom) or sleep behaviors, and allow for real-time transfer of information to family caregivers or health care providers. These types of systems can alert caregivers

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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to emergency situations such as a fall or changes in activity patterns that may signal a potential health issue or functional decline. This can enable caregivers to stage an early intervention and potentially avoid catastrophic health events or hospitalization. Numerous technical and ethical issues need to be resolved regarding implementation of these systems, however. One set of issues relates to monitoring protocols—when monitoring should occur (e.g., 24 hours, intermittently) and what types of behaviors should be monitored. Other issues relate to privacy concerns and data-sharing privileges; data coding and integration (how to make the information meaningful and user-friendly to end users); and potential problems with false alarms. Attention to usability issues and caregiver training in the use of these systems is also paramount. Finally, there are questions regarding cost, reimbursement, and system maintenance/sustainability. One recent study found that caregivers are receptive to using technologies to help them monitor care recipients (Schulz et al., 2015). They are also willing to pay for these technologies, but at a limited amount. The authors of that study suggested that a combination of private pay and government subsidy may enhance the development and dissemination of these technologies to family caregivers. Overall, broader inclusion of family caregivers in the use of health IT would further National Quality Strategy priorities, including ensuring that each person and family is engaged as partners in their care, promoting effective communication and coordination of care, and reducing avoidable harm (HHS, 2013).

Preparing Care Professionals to Provide Person- and Family-Centered Care

For more than a decade, the National Academies of Sciences, Engineering, and Medicine has called for urgent attention to the inadequate preparation of the health care and/or social services workforce to meet the needs of older adults (IOM, 2003, 2008, 2012a, 2014). It is beyond the scope of this report to assess the curricula and licensing requirements of the relevant professions. Nevertheless, it is clear that preparing providers to deliver person- and family-centered care to older adults will require a broad-based effort—across the educational continuum and in an interdisciplinary manner—to address and ensure the competence of their respective professions to work with family caregivers of older adults. Many disciplines are likely to encounter family caregivers of older adults, including physicians; physician assistants; nurses (including advanced practice nurses); social workers; psychologists; physical, occupational, and speech therapists; pharmacists; and direct care workers (e.g., certified nursing assistants, home health aides, and personal care aides). Primary care physicians, nurse practitioners, and social workers serve an especially important role as communicator with

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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families and caregivers. Examples of the challenges they face are presented in Box 6-1.

Although few standards for health and social services professionals’ engagement with family caregivers have been developed, the priority areas for training the workforce to provide person- and family-centered care include

  • recognizing family caregivers’ involvement in older adults’ care;
  • assessing caregivers’ willingness and ability to take on the tasks in older adults’ care plans;
  • engaging family caregivers as respected members of the care team;
Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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  • providing and communicating information to the family caregiver; and
  • recognizing family caregivers’ health care and support needs and helping them obtain caregiver supportive services (e.g., training, counseling, respite care) where appropriate, and referral to the caregiver’s primary care physician.

Some promising efforts to identify needed standards and facilitate their implementation are under way, especially in nursing and social work (Kelly et al., 2008; Mast et al., 2012; Messecar, 2012; Mitnick et al., 2010; National Association of Social Workers, 2010; Parker et al., 2016; Rabow et al., 2010). For example, a State of the Science Symposium on Professional Partners Supporting Family Caregivers identified a set of rec-

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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ommended standards for social workers and nurses related to communication, assessment and practice, collaboration, and leadership. However, the standards are generally stated and lack necessary specifics regarding essential knowledge and skills. Whether any of the recommendations have been implemented in practice is uncertain.

Little attention has been paid to understanding family systems, changing family structures, and identifying, assessing, and addressing family caregiver needs as a growing area of practice in physician training. Family-Oriented Primary Care, a textbook for primary care physicians originally published in 1990, has long advocated for full inclusion of family in primary care through all stages of a person’s life (McDaniel et al., 2005). It does not, however, address the skills and competencies for providers that would be required. Similarly, although the American Geriatrics Society (AGS) has defined person-centered care to include family, the AGS recommendations do not address the challenges that family caregivers face or treat caregivers as central to the care team (AGS Expert Panel, 2012). The American College of Physicians’ Ethics, Professionalism and Human Rights Committee has done promising work on bioethics related to family caregivers, recognizing the evolving need for consideration of the role of family caregivers while protecting individual rights (Mitnick et al., 2010). It goes further than the AGS Panel in recognizing physicians’ responsibility to plan for necessary caregiver training and to attend to caregiver stress.

Cultural competence in working with family caregivers is also essential, given the growing diversity of the older adult population and family caregivers.3 The concept of cultural competence has gained wide acceptance in health care and social services. While the importance of preparing providers for working with diverse caregivers is recognized for LTSS and the health care system, few guidelines exist on the core competencies for working with diverse caregivers and the best strategies for implementing these in systems of care. Cultural competence standards, such as the National Standards on Culturally and Linguistically Appropriate Services developed by the Office of Minority Health, are widely regarded as important for reducing health disparities in diverse populations, including access to and quality of care, and have been incorporated into professional training and continuing education. However, these cultural competence guidelines focus primarily on the individual, although competence in working with family caregivers is often noted. Many approaches to cultural competence have been developed, but evidence for the effectiveness of these approaches is modest and mixed. For example, while there is modest evidence for the effectiveness of cultural competence training interventions on provider attitudes, knowledge, and

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3 See Chapter 2 for demographic data on the makeup of the caregiver and care recipient populations.

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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skills and individual adherence to a treatment regimen, the impact on other individual outcomes is weaker (Beach, 2007; Bhui et al., 2007; Clifford et al., 2015; Horvat et al., 2014). Few training programs have included specific content on how to work with diverse caregivers or have measured the impact of cultural competence on relevant caregiver outcomes (e.g., satisfaction or adherence).

Organizational Change and New Models of Care

Given the current state of interactions between family caregivers and the health care and LTSS systems, new models of person- and family-centered care are clearly needed (Lewis, 2008). Individual organizations and systems of care will need to change their cultures in order to successfully ensure that the health care and LTSS systems adequately recognize and support family caregivers.

There are resources to guide organizations committed to developing person- and family-centered practices. For example, the Roadmap for Patient + Family Engagement in Healthcare Practice and Research, developed by the American Institutes for Research, offers practical strategies that organizations can use to help clinicians and health care leaders partner with older adults and their families at both the direct care and organizational levels (Carman et al., 2014). The roadmap emphasizes that to achieve this aim, organizations and systems of care have to be held accountable to the core principle of family-centeredness. The Institute for Healthcare Improvement’s “Always Events” initiative provides another framework to help health care leaders achieve person- and family-centered care service delivery (Bowie et al., 2015; IHI, 2014). The framework defines “always events” as evidence-based practices or sets of behaviors that provide the following: “a foundation for partnering with individuals and their families; actions that will ensure optimal individual experiences and improved outcomes; and a unifying force for all that demonstrates an ongoing commitment to person- and family-centered care” (IHI, 2014, p. 4).

The extent to which providers encounter family caregivers of older adults and the nature of their interaction varies substantially depending on the care setting and other factors. Regardless, family-centered care is achievable to some degree across different care settings and providers. For example, physicians working in emergency departments may often encounter family caregivers of older adults, but are likely to have limited opportunity to engage and support them. By contrast, family practice physicians who care for older adults are likely to have more frequent opportunities to engage with and provide ongoing support to the caregivers they encounter. Nurses and social workers in hospitals, nursing homes, or home care programs have frequent contact with family caregivers. Home

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

health aides, personal care aides, and certified nursing assistants working in homes or residential settings also commonly serve older adults who have family caregivers. In fact, they are often in the best position to understand the challenges of caregiving, but may lack sufficient training or authority to support the family caregiver. Providers who are engaged in palliative or end-of-life care often view family caregivers as an essential part of the care team and can play an important role in supporting them. Whatever the setting or professional discipline, organizations and systems of care should be held accountable for providing family-centered services and care.

Evaluation of the effectiveness of efforts to prepare health care and social service professionals with the skills and competencies to actively engage and support both older individuals and their family caregivers is needed. Rigorous evaluation of metric-based family caregiver outcomes will be critical to making competence in family-centered care a standard practice. No metrics have been developed, however, and significant work is required to develop them. The committee urges CMS to take on this challenge.

CONCLUSIONS

The committee’s key findings and conclusions are described in detail in Box 6-2. In summary, the committee concludes that despite the integral role that family caregivers play in the lives of older adults with complex care needs, they are often marginalized or ignored in the delivery of health

Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×
Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
×

care and LTSS, and are often ignored in public policy as well. Paradoxically, family caregivers may be excluded from treatment decisions and care planning while the providers who exclude them assume their availability to perform the wide range of tasks prescribed in the older adults’ care plan. Numerous barriers impede systematic recognition and partnership with family caregivers, including the bioethical emphasis on individual autonomy, payment rules that discourage care providers from spending time to communicate with caregivers, legal issues related to individual privacy, and a health insurance model oriented to individual coverage.

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Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Suggested Citation:"6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports." National Academies of Sciences, Engineering, and Medicine. 2016. Families Caring for an Aging America. Washington, DC: The National Academies Press. doi: 10.17226/23606.
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Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation’s family caregivers provide the lion’s share of long-term care for our older adult population. They are also central to older adults’ access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population.

Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.

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