Lynn Friss Feinberg, MSW

As November is National Family Caregivers Month (#NFCMonth), with  this year’s theme “Caregiving Around the Clock,” we are pleased to reprint an Eldercare Voices column on the importance of recognizing the vital role of family caregivers that first was published  in the February 2015 issue of The Dual Agenda (the previous name of this newsletter).

 />Person- and family-centered care (PFCC) generally refers to an orientation to the delivery of health care and supportive services that considers an older adult’s needs, goals, preferences, cultural traditions, family situation and values. It includes the person and, when appropriate, the family, at the center of the care team, along with health and social service professionals and direct care workers. This approach recognizes the role of family caregivers, who often are critical sources of support for older adults with chronic or disabling conditions. The demonstrations underway to integrate care for those eligible for both Medicare and Medicaid require participating health plans and provider groups to conduct a person-centered care plan that allows the enrollee to determine who can participate on his or her care team.</p>
<p><em>Person versus Patient</em></p>
<p><em></em>PFCC builds upon the concept of “person-centered care.” Traditionally, the term “person” is used in Long-Term Services and Supports (LTSS) settings, while the term “patient” is commonly used in a medical context. The term “person” rather than “patient” is preferred in that it connotes consideration of the “whole person,” including family relationships, when appropriate, and emphasizes continuity of care and support, and quality of life. In contrast, the conventional medical model is organized around providers, episodes of care, and specific diseases. Person-centeredness includes, but also looks beyond, the medical and physical health needs of the older adult.</p>
<p>The concept of person-centeredness and person-centered planning can be traced to changes that took place in the early 1970s as part of the independent living movement, led by people with disabilities. It is focused on the development of a social system in which all people with disabilities have the opportunity to lead productive, meaningful lives as integrated and valued members of their communities. The concept is equally applicable to older adults dealing with chronic and complex conditions.</p>
<p><em>Importance of the Family</em></p>
<p><em></em>We embrace the term “person- and family-centered care” because the term “person-centered care” alone may not adequately capture the importance of family in the lives of older people.</p>
<p>In 2009, family caregivers of adults with chronic or disabling conditions provided an estimated 40.3 billion hours of unpaid care at an estimated value of $450 billion. Without family caregivers, the health care and LTSS systems would be unable to meet the needs of older adults.</p>
<p>Family-centered care amplifies person-centered care by recognizing and supporting the vital role of family caregivers, building on the strengths of family connections. Some key facts:</p>
<li>The family is the main source of help for older people with functional limitations in daily life. Researchers estimate that 66 percent of older people with disabilities who receive LTSS at home get <em>all </em>their care exclusively from family members, mostly wives and adult daughters. Another 26 percent receive some combination of family care and paid help; only 9 percent receive paid help alone.</li>
<li>Frail older adults often rely on family to help them negotiate interactions with health and social service professionals. Family members and close friends often both <em>provide</em> and <em>coordinate</em> care. Such involvement can improve outcomes for older adults needing care and supportive services.</li>
<li>Family caregivers are often the main source for managing continuity of care. A consistent family caregiver will recognize his or her loved one as a whole person, not focusing exclusively on a specific disease, disorder, or episode of hospital care.</li>
<li>Family caregivers typically need information and support to function effectively in their caregiving role. Unless family caregivers are involved in assessment and care planning, they may not understand what is expected of them in their day-to-day caregiving role. Additionally, they may benefit from education, training, and access to other caregiver support services, such as respite care.</li>
<li>There is increasing recognition of the need for a family-centered approach in health care and LTSS to enhance mutually supportive relationships among clinicians, service providers, older adults, and their family caregivers.</li>
<li>Family caregivers of older people with complex chronic care needs may be vulnerable and at risk themselves. Reducing caregiver strain has been shown to prevent unnecessary hospitalizations, and prevent or delay the use of nursing homes.</li>
<p>The interests and decisions made by older adults and their family caregivers may not always be the same. Differences in the wishes, preferences, and capacity of older adults and family caregivers can present ethical challenges to health care and social service professionals. Conflicts may also arise among family members of an individual older adult. Providers can use skills in listening, empathy, conflict resolution, and mediation to help families cope and plan effectively. Holding a family meeting with a neutral facilitator or professional can mitigate disagreements, for example.</p>
<p><em>Key Elements of Person- and Family-Centered Care in Practice</em></p>
<p><em></em>The following are key elements of the PFCC model:</p>
<li>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 – asking, “What is important to you?” They are aware of the individual’s and family’s cultural background and the language in which they choose to communicate, so that they can provide culturally and linguistically appropriate services.</li>
<li>Recognition of the whole person. In practical terms, a “whole person” orientation includes care and support that is integrated within and coordinated across the health care and LTSS systems, and acknowledges the individual in the context of relationships, especially with family and friends. It also emphasizes the person’s and the family’s well-being, taking into account physical and mental health, spiritual and cultural traditions, social supports, and the person’s engagement with her or his community.</li>
<li>Assessing and addressing both the individual’s and the family caregivers’ information, care and support needs and their experience of care. Based on an assessment of the older adult’s and family’s needs, a plan of care reflects the goals, values and preferences of the individual and family. Recognizing and listening to family needs and concerns are fundamental principles of good care planning, especially when the plan of care depends on a family caregiver, such as when an older adult has Alzheimer’s disease.</li>
<li>Promotion of communication, shared decision making and empowerment. This element is based on the principle that older adults, their families (if or when desired by the individual), and their health care and social service providers communicate together and build trust in ways that support individuals and families. Such decisions should respect individual and family goals and cultural needs, involve the person in everyday care choices, help the person and family better manage health and care options, and reduce caregiver strain.</li>
<li>Emphasis on coordination and collaboration across care settings. Good care for older people with complex chronic care needs and functional limitations requires a team of health and social service professionals, including direct care workers. This collaborative approach integrates family caregivers into the care team, engaging them as partners in care and providing tools for family caregivers, such as having one telephone number they can always call for help. Care and supportive services for older adults and their family caregivers are accessible, comprehensive, and continuous over time, and coordinated among providers and across care settings.</li>
<p><em></em>In recent years, PFCC has gained increased attention, but it is not yet commonplace in the delivery of health care and LTSS. To promote greater adoption of PFCC in everyday practice, public policies should support adherence to the key elements of PFCC; sufficient resources and supportive technology to address coordination and continuity of care; a trained interdisciplinary care team with the older adult and family at the center; and the provision of services and supports that matter most to older adults and to their families.</p>
<p><em>Lynn Friss Feinberg, MSW, is a senior strategic policy advisor with AARP’s Public Policy Institute. Her work focuses on family caregiving and long-term care issues. Prior to joining AARP in February 2011, Ms. Feinberg was the first director of the Campaign for Better Care, an initiative of the National Partnership for Women and Families. Previously, she held leadership positions at the San-Francisco based Family Caregiver Alliance, where she led the first 50-state study on publicly funded caregiving programs in the United States. Ms. Feinberg is a leading national expert on family caregiving and long-term care. She currently serves on the Institute of Medicine’s Committee on Family Caregiving for Older Adults, and is a past chair of the American Society on Aging.</em></p>
<p>Portions of this column reprinted with permission from the AARP Public Policy Institute. The original paper, with citations, is available <a href=here.