Families Caring for an Aging America (2016) / Chapter Skim
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6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports
6 Family Caregivers' Interactions with Health Care and Long-Term Services and Supports
Pages 211-252
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inclusion of family caregiver experiences in quality measurement; (3) supporting family caregivers through health information technology; and (4)
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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)
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, 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)
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. 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 Optimal Caregiver Barriers to Optimal Aspect of Care Involvement Caregiver Involvement Shared decision When caregivers (CGs)
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Assuring adequate CGs are the main providers When CGs lack necessary skills, personal care and of older adults' personal care resources, or knowledge of care safety services and may also supervise recipients' treatments, they may LTSS provided by others. As unintentionally place older adults such, they are critical to older at heightened risk of adverse adults' safety and receipt of health events such as medication appropriate services.
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. 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)
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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.
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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 alter natives of options given individual circumstances; • elicit individual preferences regarding harms, benefits, and poten tial 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)
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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)
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. 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.
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. The "care team" is defined as including individuals, families, and the health care and supportive services workers who interact with individuals.
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Emphasis on coordination and Collaborative care integrates families in the care collaboration across settings of 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.
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Inclusion of both family and caregiver experiences in quality measurement 3. Supporting family caregivers through health information technology 4.
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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)
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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 A financial incentive for state Medicaid programs; provides an program 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.
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. 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.
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. 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.
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. 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)
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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.
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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.
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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)
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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)
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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)
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. 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)
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; 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)
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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;
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1489-1490. • 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)
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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.
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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.
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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.
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organizations and providers expect and depend on family caregivers to coordinate and help carry out older adults' care plans, but at the same time: • he organization, delivery, and financing of health care and LTSS are T designed to serve the beneficiary or care recipient. o a result, providers have little or no financial incentive to spend time As with caregivers, seek their input, or provide the support they need to carry out older adults' care plans.
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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. REFERENCES Abadir, P
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Not without family caregivers! http://www.american bar.org/publications/bifocal/vol_37/issue_1_october2015/person_centered_planning.html (accessed December 2, 2015)
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. San Francisco, CA: Family Caregiver Alliance.
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2008. Retooling for an aging America: Building the health care workforce.
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2006. "This case is closed": Family caregivers and the termination of home health care services for stroke patients.
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2012. Did expanding eligibility for family caregiver support program pay for itself by reducing the use of Medicaid-paid long-term care?
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2010. NASW standards for social work practice with family caregivers of older adults.
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2004. Family caregivers of older adults on home enteral nutrition have multiple unmet task-related training needs and low overall preparedness for caregiving.
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2009. Encouraging family caregivers to "step inside the pa tient's shoes." Home Healthcare Now 27(4)
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2016a. Family caregivers and consumer health information technology.
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