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“patient-centered care”3 is preferred people with chronic or disabling because it reflects the “whole person,” conditions, building on the strengths of including family, when appropriate, and family connections. emphasizes continuity of care and support, and quality of life. In contrast, ■ The family is the main source of help the conventional medical model in for older people with functional health care is organized around limitations in daily life. Researchers providers, specific diseases, episodes of estimate that two out of three care, and office visits to clinicians. (66 percent) older people with Person-centeredness looks beyond the who receive LTSS at medical and physical health needs of the home get all their care exclusively older adult. from family members, mostly wives and adult daughters. Another quarter The concept of person-centeredness and (26 percent) receives some person-centered planning can be traced combination of family care and paid to changes that took place in the early help; only 9 percent receive paid 1970s as part of the help alone.7 movement, led by people with ■ Frail older adults often rely on disabilities. The movement—part of the family to help them negotiate broader movement for rights— interactions with health care and focused on the development of a social social service professionals. While system in which all people with some older adults want full control disabilities have the opportunity to lead over decision making, others may productive, meaningful lives as need or prefer to delegate decisions integrated and valued members of their to their family caregivers.8 communities.4 The attributes of a person-centered approach can be found ■ Family members and close friends as far back as the 1940s and the 1950s in often both provide and coordinate the work of psychologist Carl Rogers, care. Family involvement can who pioneered “client-centered” improve outcomes for older adults counseling.5 needing care and supportive services. For example, recent research shows Importance of the Family that family caregivers can help explain clinician comments and The term “person-centered care” alone instructions to the older adult during may not adequately capture the medical visits, and they can importance of family in the lives of older communicate information about their people. In 2009, family caregivers of loved one’s health conditions and adults with chronic or disabling functioning to health and social conditions provided an estimated 40.3 service professionals.9 billion hours of unpaid care at an 6 ■ Family caregivers are often the main estimated value of $450 billion. Without family caregivers, the health source for managing continuity of care and LTSS systems would be unable care. A consistent family — to meet the needs of older adults. across all transitions of care and care settings—will recognize his or her Family-centered care amplifies person- loved one as a whole person, not centered care by recognizing and focusing exclusively on a specific supporting the vital role of family disease, disorder, or episode of caregivers. It also addresses factors that hospital care. Family caregivers often are essential to good care for older are the older person’s “eyes and ears,” 2 Moving Toward Person- and Family-Centered Care

recognizing changes in symptoms and their caregiving situation. This explicit function than may necessitate recognition is often family caregivers’ different care or supports.10 initial step in identifying and accessing supportive services for their loved one ■ Family caregivers typically need 15 information and support to function and maintaining their own well-being. effectively in their caregiving role. In some instances, providing good care They may benefit from education, may necessitate choosing among training, and access to other conflicting responsibilities, values, and caregiver support services, such as principles. In bioethics, with its respite care. Unless family emphasis on individual autonomy and caregivers are involved in confidentiality, there is increasing assessment and care planning, they recognition of the need for a family- may not understand what is expected centered approach in health care and of them in their caregiving role. LTSS to enhance mutually supportive ■ Social isolation—for both the family relationships among clinicians, service caregiver and the older adult— is providers, older adults, and their family 16 considered a risk factor in today’s caregivers. society.11 Caregivers who experience social isolation also experience high The interests and decisions made by levels of .12 Recent older adults and their family caregivers findings from the Stress in America may not always be the same. Differences survey show that family caregivers in the wishes, preferences, and capacity to aging relatives report higher levels of older adults and family caregivers can of stress and poorer health than the present ethical challenges to health care population at large.13 and social service professionals. Conflicts may also arise among family ■ Family caregivers of older people members of an individual older adult. with complex chronic care needs may Providers can use skills in listening, be vulnerable and at risk themselves. empathy, conflict resolution, and Ignoring family caregivers’ needs can mediation to help families cope and plan lead to burnout. When caregivers feel effectively.17 Holding a family meeting unprepared to carry out caregiving with a neutral facilitator or professional tasks and are overburdened, they may can mitigate disagreements, for example. risk their own health and impede their ability to provide care. Reducing Key Elements of Person- and caregiver strain can help to prevent Family-Centered Care in Practice unnecessary hospitalizations, and prevent or delay the use of nursing In practical terms, PFCC takes a holistic homes.14 approach to the individual and values the person’s stated preferences about what is Family members who provide care meaningful in the provision of care and typically do not self-identify as “family support.18 For example, it means that caregivers.” They often are invisible to older people can have control over when, health professionals and excluded from where, and how they do things; express the care process. In PFCC, health and preferences for the services they receive social service professionals play a and who provides the services; are able to central role in helping family members wake up and go to bed when they like; and friends of older adults—be they celebrate life events important to them daughters, sons, partners, wives, and their family’s cultural traditions and nephews, or neighbors—to acknowledge rituals; and engage with their family and 3 Moving Toward Person- and Family-Centered Care friends in ways that provide purpose and a plan of care reflects the goals, meaning to them.19 The following are key values, and preferences of the elements of PFCC: individual and family. It is based on wants and needs that are meaningful ■ Respect and dignity for the older to the individual (such as directing person and family. Health and social one’s own daily schedules) and the service professionals listen to and support needs of family members or honor the person’s and family’s friends (such as education and needs, values, preferences, and goals training, and respite care) to feel for care—asking, “What is important better prepared to continue in their to you?” They are aware of the caregiving role without becoming individual’s and family’s cultural overstressed. Recognizing and background and the language in listening to family needs and which they choose to communicate, concerns are fundamental principles so that they can provide culturally and of good care planning, especially linguistically appropriate services. when the plan of care depends on a They recognize the importance to the family caregiver, such as when an older adult of having purpose and older adult has Alzheimer’s disease. meaning in daily living and quality of life. For example, a person’s goal ■ Promotion of communication, might be going to a grandson’s shared decision making, and wedding in six months, or attending empowerment. This element is weekly religious services in the based on the principle that older community. Identified goals and adults, their families (if or when preferences are incorporated into the desired by the individual), and their planning, delivery, and coordination health care and social service of services and supports across care providers communicate together and settings. build trust in ways that support individuals and families and are ■ Recognition of the whole person. In useful in decision making. It practical terms, a “whole person” involves having access to timely, orientation includes care and support complete, and accurate information that is integrated within and and tools to make shared and coordinated across the health care informed decisions and to plan for and LTSS systems, and future needs. Such decisions should acknowledges the individual in the respect individual and family goals context of relationships, especially and cultural needs, involve the with family and friends. It also person in everyday care choices, help emphasizes the person’s and the the person and family better manage family’s well-being, taking into health and care options, and reduce account physical and , caregiver strain.20 spiritual and cultural traditions, social supports, and the person’s ■ Emphasis on coordination and engagement with her or his collaboration across care settings. community. Good care for older people with complex, chronic care needs and ■ Assessing and addressing both the functional limitations requires a team individual’s and the family of health and social service caregivers’ information, care, and professionals, including direct care support needs and their experience workers. This collaborative approach of care. Based on an assessment of integrates family caregivers into the the older adult’s and family’s needs, 4 Moving Toward Person- and Family-Centered Care

care team, engaging them as partners enable them to continue in their caring in care and providing tools for family role. Health and social service caregivers themselves, such as professionals can begin to acknowledge having one telephone number they family members by asking the family can always call for help. Care and caregiver, “How are you doing?”23 supportive services for older adults and their family caregivers are Conclusion accessible, comprehensive, continuous over time, and Because serious illness and chronic coordinated among providers and disability affect the family as well as the across care settings. older individual, researchers view including both the person and the family For older people with cognitive caregiver as full partners in care and impairment, person-centeredness may decision making, and improving their mean being able to articulate certain care experiences, as important measures preferences and choices for themselves, of person- and family-centered care.24 such as what to wear or what to do Understanding and paying attention to during the day. Research has shown that family caregiver needs and situations, people with early to moderate cognitive lessening the strain in the daily lives of impairment may possess the capacity to caregiving families, and better express daily preferences for care, and understanding their perspectives are also should be encouraged to discuss their important aspects of good care for older everyday care wishes with their family adults. caregivers, before they no longer have the capacity to participate in decision In recent years, PFCC has gained making.21 Including the perspective of increased attention, but it is not yet people with cognitive impairment can commonplace in the delivery of health enhance their autonomy and improve care and LTSS. their quality of life.22 To promote greater adoption of PFCC in In a PFCC approach, family caregivers everyday practice, public policies should are no longer viewed as just a “resource” support adherence to the key elements of for their loved ones; rather, they are PFCC; sufficient resources and recognized as individuals who may supportive technology to address themselves need information, training, coordination and continuity of care; a and support. Family caregivers are trained interdisciplinary care team with acknowledged, their needs are assessed the older adult and family at the center; and addressed, and they have access to and the provision of services and support services, such as respite care, to supports that matter most to older adults get a break from caregiving and to and to their families.

Acknowledgments The author gratefully acknowledges the helpful review and suggestions of Carol Levine, United Hospital Fund; Katie Maslow, Institute of Medicine; and AARP colleagues Enid Kassner, Rita Choula, Rhonda Richards, Don Redfoot, Susan Reinhard, and Rick Deutsch.

5 Moving Toward Person- and Family-Centered Care

Endnotes

1 According to the Institute for Patient- and Family-Centered Care, the definition of family and the degree of family involvement in care and support are determined by the person, provided he or she has the capacity to do so. http://www.ipfcc.org/about/index.html. 2 The term “family caregiver” is broadly defined and refers to any relative, partner, friend, or neighbor who has a significant relationship with, and who provides a broad range of assistance for, an older adult with chronic or disabling conditions. 3 The Institute of Medicine (IOM) defines patient-centered care as “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and that patients have the education and support they need to make decisions and participate in their own care.” IOM, Envisioning the National Health Care Quality Report (Washington, DC: National Academies Press, 2001). 4 J. Heumann, “Independent Living Movement: organizing for an active, disabled old age,” Generations 8, no.4 (1984): 29–30. 5 S. Dowling, J. Manthorpe, and S. Cowley, Person-Centered Planning in Social Care: A Scoping Review (London, England: Kings College, 2006). 6 L. Feinberg, S. C. Reinhard, A. Houser, and Rita Choula, Valuing the Invaluable: 2011 Update, The Growing Contributions and Costs of Family Caregiving, AARP Public Policy Institute Insight on the Issues 51 (Washington, DC: AARP, June 2011). 7 P. Doty, “The evolving balance of formal and informal, institutional and non-institutional long-term care for older Americans: A thirty-year perspective,” Public Policy & Aging Report 20, no. 1 (2010): 3–9. 8 S. Mitnick, C. Leffler, and V. Hood, “Family caregivers, patients and physicians. Ethical guidance to optimize relationships.” Journal of General Internal Medicine (2010). Doi:1007/s11606-009-1206-3. 9 J. L. Wolff, C. M. Boyd, L .N. Gitlin, M. L. Bruce, and D.L. Roter, “Going it together: Persistence of older adult’s accompaniment to physician visits by a family companion,” Journal of the American Geriatrics Society 60, no. 1 (2012):106–12. 10 C. Levine, D. Halper, A. Peist, and D. Gould, “Bridging troubled waters: Family caregivers, transitions, and long-term care,” Health Affairs 29, no. 1 (2010):116–24. 11 Institute for Patient- and Family-Centered Care, http://www.ipfcc.org/about/index.html. 12 National Alliance for Caregiving (NAC) and AARP, Caregiving in the U.S. 2009 (Bethesda, MD: NAC, and Washington, DC: AARP, November 2009). Funded by the MetLife Foundation. 13 American Psychological Association, Stress in America (Washington, DC: American Psychological Association, January 2012). 14 Feinberg et al., Valuing the Invaluable. 15 National Association of Social Workers, NASW Standards for Social Work Practice with Family Caregivers of Older Adults (2010), http://www.socialworkers.org/practice/standards/NASWFamily CaregiverStandards.pdf. 16 S. Mitnick et al., “Family caregivers, patients and physicians. Ethical guidance to optimize relationships,” Journal of General Internal Medicine (2010). 17 National Association of Social Workers, NASW Standards for Social Work Practice with Family Caregivers of Older Adults. 18 A. Reamy, K. Kim, S. Zarit, and C.J. Whitlatch, “Understanding the Discrepancy in Perceptions of Values: Individuals With Mild to Moderate and Their Family Caregivers,” The Gerontologist 51, no. 4 (2011): 473–83. 19 L. Boise, “The Family’s Role in Person-Centered Care,” Journal of Psychosocial Nursing and Mental Health Services 42, no. 5 (2004): 12–20.

6 Affairs Affairs a as strategy for improving primary care, 24 23 22 21 20 Person Toward Moving Edgman American Medical Association, Schwartzberg, and C. Irmiter (Chicago, IL: Redesign, Practice and Needs of Older Adults through Environmental Clinician A by Design: “ choices? Fam Support of persons with cognitive impairment and their family caregivers, October 2011). 2011). October Rol

K. Browne, D. Roseman, D. Shaller, and S. S. and D. Shaller, D. Roseman, Browne, K. E. G. Fine, D. Tipiani, and E. H. Callahan, C. Feinberg and J. L. Whitlatch, F. C.J. Whitlatch, L. F. Feinberg,and S.Tucke, L. Feinbergand A. e of the family caregiver, 29, no. 5 (2010): 1–5. (2010): 5 no. 29, - ” Levitan, Levitan, The Gerontologist ily Caregivers, ily Caregivers,

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