The Issue in Focus

The phrase "person-centered care" means placing the individual healthcare recipient, rather than his or her disease or illness, at the center of the person's healthcare. The term "resident-centered care" is often used to mean person-centered care in the context of long-term care (e.g., nursing home and other residential arrangements for older or disabled adults, such as assisted living). (Thompson et al.)

In the United States, person-centered care is becoming ingrained in CMS requirements and is advanced through various federal and state healthcare initiatives. CMS regulations for nursing facilities, for example, state that person-centered care is an "overarching principle" and define person-centered care as a requirement "to focus on the resident as the locus of control and support the resident in making their own choices and having control over their daily lives" (42 CFR § 483.5).

A person-centered healthcare organization strives to ensure that all persons have timely access to quality care that reflects their values and preferences and focuses on what matters most to the individual as his or her needs, goals of healthcare, and preferences change over time (The Health Foundation; Thompson et al.). Research shows the value of person-centered care. Person-centered care innovations improve individuals' experience of care, improve management of chronic disease and multiple illnesses, and achieve better outcomes of care. (Bokhour et al.; Mead and Bower; McMillan et al.; Berntsen et al.)

Some experts suggest that person-centered care, by achieving better alignment of the interests of individuals and the interests of providers, has the potential to reduce costs and enhance provider revenue (AGS; SCAN Foundation "Person-Centered Care").

History of the Concept

The concept of person-centered healthcare is not new. "The good physician treats the disease; the great physician treats the patient who has the disease" is a maxim attributed to Sir William Osler (1848–1919), a Canadian-born physician considered one of the founders of modern medicine (Greenfield et al.). The current shift from provider-driven toward person-centered healthcare can be traced to various sources, notably Valerie Billingham, a sociologist from the United Kingdom. While attending a global health summit in 1998, Billingham commented on a session advocating viewing healthcare "through the patient's eyes" and coined the phrase, "Nothing about me without me." (Barry and Edgman-Levitan; Billingham; Quinlan) The maxim is emblematic of the shift toward person-centered care that is taking place in National Health Service hospitals in the United Kingdom and in healthcare organizations across the continuum of care in the United States, Australia, Canada, New Zealand, Norway, Sweden, and elsewhere (Berwick; Barry and Edgman-Levitan; Delbanco et al.; Quinlan; Taylor and Groene). These transformative efforts build on dimensions of person-centered care delineated decades ago by the Picker/Commonwealth Program for Patient-Centered Care (now the Picker Institute) (Gerteis et al.; Balik et al.).

In 2001, the Institute of Medicine (IOM), now the National Academy of Medicine, in its publication Crossing thequality chasm: a new health system for the 21st century, identified "patient-centered care" as one of six interrelated aims of quality healthcare, broadly defining the concept as care that is respectful of and responsive to individual patient preferences, needs, and values and ensures that patient values guide all clinical decisions.

The multifaceted and interrelated dimensions of "patient-centered" care have been identified as including the following elements (Gerteis et al.):

• Respect for the patient's values, preferences, and expressed needs
• Information and education
• Access to care
• Emotional support to relieve fear and anxiety
• Involvement of family and friends
• Continuity and secure transition between healthcare settings
• Physical comfort
• Coordination of care
  

The Gold Stan

dard

Patient-centered care has become the "gold standard" against which the quality of healthcare is measured and is the foundation on which person-centered care is built (The Health Foundation; Bokhour et al.; Aboumatar et al.). What person-centered healthcare will look like "depend[s] on the needs, circumstances, and preferences of the individual receiving care." What is important to one person in his or her healthcare "may be unnecessary, or even undesirable, to another individual." (The Health Foundation)

At the core of person-centered care is the recognition that a person's problems must be viewed the way the individual sees them and addressed "in the context of their multimorbidity" (Starfield). Emphasizing that person-centered care reaches beyond patient-centered care, Starfield, a physician-advocate for person-centered healthcare, explains that the approach facilitates appropriate care in the context of the totality of the individual's needs, "focusing on the whole person." Person-centered care requires a strategy that ensures that healthcare providers respond to problems as individuals experience them, "not only as professionals define them." (Starfield) Carefully eliciting what the person's situation is at the moment—which changes over time—can lead to a productive discussion between the individual and the clinician regarding what aspect of the situation demands action (Montori).

The shift in focus from the individual's diagnosed illnesses or behavioral health deficits to a strengths-based, person-centered focus is a significant change in the culture of healthcare that empowers individuals to engage with providers in their healthcare (Stanhope). A person's degree of engagement in his or her health encompasses the concept of patient activation. Patient activation reflects "understanding one's own role in the care process and having the knowledge, skills, and confidence to take on that role." Studies have linked higher patient activation with better patient outcomes and lower costs. (Hibbard et al.)

Honoring an individual's preferences when he or she makes a choice involving risk can be disconcerting for risk managers concerned with resident safety, notably with regard to individuals living with dementia or other cognitive impairments. However, organizations are overcoming these challenges and actualizing the idea of person-centered care into a clearly attainable goal (Aboumatar et al.). They are recognizing that the experiences of individual healthcare recipients and their families, and what matters to them, are learning tools that provide insight that is not captured by quantitative data and that can serve as a catalyst in influencing person-centered action plans (Luxford et al.).

What are the most common preferences of older adults receiving long-term services and support? Do their preferences differ by care setting? Research shows diversity among older adults' preferences and illustrates the importance of exploring each person's priorities for everyday life, and the need to capture and be responsive to changing healthcare and life goal priorities as the individual moves across settings of care (Abbott et al.).

Person-centered care "represents a shift from a traditional, paternalistic, provider‐driven and disease‐focused approach towards one that fully integrates the patient's perceptions, needs, and experiences, into every phase of medical consultation, treatment and follow‐up" (Fix et al.). The Veterans Health Administration's (VHA) "whole health approach," for example, departs significantly from a healthcare system focused primarily on disease management, focusing instead on the physical, emotional, and social well-being of the whole person. The VHA has established several system‐wide policies that emphasize the delivery of "personalized, proactive, and patient‐driven care."

The shift to person-centered care is reflected in the name change for VHA long-term care facilities. Formerly "nursing home care units," the facilities are now called community living centers (CLCs). All CLCs are designed to focus on one care model, called HATCh for "Holistic approach to transformational change." The HATCh model depicts three intersecting spheres with residents of CLCs at its center—care practices, work practices, and the environment of care—and also encompasses leadership, family and community, and other stakeholders (VA)

Operationalizing person-centeredness represents a significant transformation and requires, above all, clarity in definition. Although healthcare policy makers, researchers, and healthcare institutions have used the term for two decades, "centeredness" remains an amorphous concept. When frontline healthcare providers conflate person-centered care as encompassing "everything" about the care that is provided within a facility, or focus only on the individual's diagnosed illness, the result is failure to align person-centered practices with transformational policy that recognizes and adapts to individuals' changing needs, goals, and preferences for healthcare. (Fix et al.)

Definition and Core Elements

A 2018 survey of U.S. health system executives found that nearly 65% had changed their definition of patient-centered care in the past five years, assigning multiple components to the definition (Castellucci). Although CMS regulations define person-centered care, the rule allows providers flexibility to use any term they choose so long as the term satisfies the principles described in the regulation (42 CFR § 483.5). CMS states that facilities should implement the principle of ''person-centered care'' by developing internal guidelines that promote resident choice and control over their individual care (CMS "Medicare and Medicaid Programs; Reform").

The SCAN Foundation, a California-based independent public charity devoted to transforming care for older adults in ways that preserve dignity and encourage independence, charged a team from AGS to collaborate with a team from the Keck School of Medicine (University of Southern California) to develop the evidence base to define the essential elements of person-centered care. The panel consisted of 14 participants from around the country with expertise in person-centered care principles, gerontology, geriatric medicine and oncology, gerontological social work and nursing, health policy and finance, law, long-term care delivery, and public health. The panel agreed that "person-centered care" means that individuals' values and preferences are elicited and, once expressed, guide all aspects of their healthcare, supporting their realistic health and life goals. Person-centered care is achieved through a dynamic relationship among individuals, other people who are important to them, and all relevant healthcare providers. This collaboration informs decision-making to the extent that the individual desires (AGS).

Operationalizing Person-Centered Care

Researchers studying person-centered care conducted interviews at several VHA sites designated as "Centers of Innovation"—which they described as "living laboratories of person-centered care innovations spanning the spectrum from environmental changes, to personalized health planning, to integrative medicine"—to identify key organizational factors that fostered or impeded the implementation of person-centered care. They interviewed employees, senior leaders, middle managers, and frontline providers and staff and identified examples of actions that fostered person-centered care in seven domains (Bokhour et al.):

• Engage leadership. Cultivate leaders to serve as models for person-centered care.
• Encourage individual and family involvement. Provide direct communication to individuals and families about person-centered initiatives; post signs throughout the facility orienting staff and individuals to the innovations driving person-centered cultural change.
• Motivate staff. Provide specific training to help staff integrate person-centered practices into their tasks; use multiple media modes including videos, emails, and bulletin boards to convey individuals' and families' positive experiences with person-centered care; conduct multidisciplinary forums in which clinical caregivers discuss social and emotional issues that arise in caring for residents; distribute "person-centered employee-of-the-month awards" to recognize staff employing person-centered care criteria encouraged by leadership.
• Focus on innovations and innovators. Identify and encourage midlevel champions and staff who are willing to take a chance in supporting a novel idea; recognize units with "public accolades" and a sum of money to use for specific improvements.
• Align staff roles and priorities. Recognize that staff may struggle with adjusting priorities and increased workload when implementing person-centered care; counsel staff that implementing person-centered practices is integral to the care they provide; hold all clinical providers equally accountable for providing person-centered care.
• Improve organizational structures and processes. Mitigate impediments, such as working in "silos" that separate care services, and identify policies and procedures that staff perceive as being "at odds" with person-centered care.
• Assess the environment of care. When possible, provide individual rooms; redesign space for more efficient use.
  

Lack of accountability and failure to provide incentives to change were identified as barriers to engaging staff in person-centered care practices. Success requires engaging "levers for change in multiple aspects of the organization, from leadership to front line staff," the researchers concluded. Echoing the findings of other studies (Epstein et al.; Luxford et al.), Bokhour et al. comment that achieving the culture change to person-centered care may depend on informed and involved individuals, receptive and responsive health professionals, and a supportive organizational culture.

Regulations and Standards

Centers for Medicare and Medicaid Services

CMS has been driving person-centered care in the United States, as the concept is increasingly a central theme in the agency's innovations, regulations, and reimbursement policy. In 2012, CMS launched the National Partnership to Improve Dementia Care in Nursing Homes, and the agency provides an online training program for nursing homes, known as Hand in Hand, that emphasizes person-centered care for individuals with dementia and the prevention of abuse.

In 2014, the agency published a final rule regarding home- and community-based services (HCBS) provided through Medicaid's 1915(c) HCBS Waiver Program; 1915(i) HCBS State Plan Option; and 1915(k) Community First Choice. The rule represents the first time that CMS established requirements for person-centered assessment, planning processes, and service plans. (CMS "Medicare and Medicaid Programs; Reform")

Long-term Care Facilities

In 2016, CMS published a revised final rule, consolidating Medicare and Medicaid requirements for participation for long-term care facilities (42 CFR part 483, subpart B; CMS "Nursing Homes"). This final rule explicitly embraces person-centered care and requires comprehensive person-centered care planning and discharge planning. Effective dates for phases 1, 2, and 3 of the rule are November 28 of 2016, 2017, and 2019, respectively.

CMS explains that a person-centered approach to care as addressed in the rule allows for flexibility in care planning and resident accommodations. The rule also implements the discharge planning requirements mandated by the Improving Medicare Post-Acute Care Transformation Act of 2014 (IMPACT Act) for long-term care facilities.

CMS states that person-centered care focuses on the resident as the locus of control and supports the resident in making his or her own choices and maintaining control over his or her daily life (42 CFR § 483.5). The rule requires comprehensive person-centered care planning (42 CFR § 483.21) and the implementation of certain other person-centered practices. Facilities must develop and implement a baseline care plan for each resident within 48 hours of admission, which includes the instructions needed to provide effective and person-centered care that meets professional standards of quality care.

Resident Rights

CMS regulations for residents' rights align with person-centeredness (42 CFR § 483.10). The facility must protect and promote the rights of the resident and focus on the resident's wishes and preferences, including circumstances in which the resident's rights are exercised by the resident's representative. Among other delineated rights, residents have the right to the following:

• To participate and develop their own care plan
• To identify individuals or roles to be included in the care planning process
• To request meetings and revisions to their person-centered plan of care
• To request whom they want at their care conference
• To request additional meetings and potential revisions to their care plan
• To participate in establishing the expected goals and outcomes of care, including the type, amount, frequency, and duration of care, and any other factors related to the effectiveness of the plan of care, and to be informed, in advance, of changes to their plan of care, including the right to see the care plan, and the right to sign the care plan when significant changes are made
• To receive visitors at any time; however, if a visitor is not a family member, the right to receive a visit is "subject to reasonable clinical and safety restrictions," as set forth in facility policy
  

CMS interpretive guidance. CMS interpretive guidance to surveyors provides detailed information and best practices for implementing person-centered care in long-term care facilities (CMS "State Operations Manual").

CMS's Quality Improvement Organizations/National Nursing Home Quality Improvement Campaign. The National Nursing Home Quality Improvement Campaign provides long-term care providers, individuals and their advocates, and quality improvement professionals with free access to evidence-based and model-practice resources to support continuous quality improvement. A treasure trove of resources, under the rubric of "seven steps to success" for implementing person-centered care, is available to help long-term care organizations implement person-centered care, track their progress, and monitor and sustain their successes (NNHQI).

Provider reimbursement for specific interventions. CMS reimbursement policy requiring shared decision-making for certain high-cost tests and procedures aligns with person-centered care. Medicare reimbursement policy for implantable cardioverter-defibrillators for primary prevention, for example, has implications for end-of-life discussions and care, in that CMS requires interaction between the individual and his or her physician or a designated nonphysician practitioner so that a shared decision can be made.

CMS also mandates shared decision-making for lung cancer screening with low-dose computed tomography and for left atrial appendage closure for stroke prophylaxis in atrial fibrillation (ACP; Merchant et al.; CMS CAG-00439N, CAG-00445N, CAG-00157R4).

Action Plan 

Make a Plan: Person-Centered Care in Aging Services Download this customizable document to track your im​ple mentation of these action recommendations.

Define Person-Centered Care

Action Recommendation: Adopt a consensus definition of person-centered care.

CMS regulations permit providers to use any terms they choose to define person-centeredness, as long as the definition satisfies the principles described in the regulation and is supported by organizational guidelines that promote individuals' choice and control over their care (42 § 483.5; CMS "Medicare and Medicaid Programs; Reform").

Developing an agreed-upon definition of person-centered care provides a starting point that can help confirm or dispel the notion some organizations may hold that the care they provide is already person-centered. Providers must recognize that individuals experience care within the context of their lives, and not through the professional lens of a diagnosis or treatment modality. (Berntsen et al.) Critically assessing the organization's definition of person-centered care can help providers acknowledge the gap between what they believe residents and families experience and what residents and families say they experience (King et al.).

The organization's definition of person-centered care should include at least the following elements (SCAN Foundation "Learn More"):

• Care provided with the individual at the center
• A goal-oriented care plan based on shared decision-making; the individual's values, preferences, and goals for his or her healthcare; and regular review of those goals
• A primary contact on the healthcare team responsible for coordination and communication
• Care coordination among all healthcare and supportive services with continual information sharing
• Education and training on person-centered care for individuals, providers, and other people involved in the individual's care
• Ongoing feedback to assess outcomes and well-being for continuous quality improvement      
  

Assess Readiness for Transformation

Action Recommendation: Identify the organization's policies and procedures that support and incorporate person-centeredness and those that may need revision.

Action Recommendation: Collaborate with quality improvement to identify opportunities to develop comprehensive person-centered care policies, procedures, and practices, and measure success in goal attainment.

Transforming an organization's culture to embrace person-centered care as the organization defines it may first require an assessment of its current culture of person-centeredness and its readiness for change. The administrator or risk manager should make an inventory of current policies and identify those that explicitly provide for person-centered care or align with CMS requirements for person-centered care, as well as policies that can serve as a basis for further transformation and strategic planning to implement person-centeredness. Identify policies and procedures that require reconsideration to support person-centeredness and schedule them for review and revision, if appropriate.

Consider using theArtifacts of Culture Change measurement tool, developed and funded by CMS and hosted and provided without charge by the Pioneer Network, to assess the organization's current culture and readiness to transform, implement, and sustain person-centered care. The tool assesses artifacts of care practices, the facility's environment, family and community factors, leadership, workplace practices, staffing outcomes, and occupancy.

Gather a "cultural change leadership team" and designate an individual whose job function is formally concerned with ensuring that policies, procedures, and practices support and align with the facility's vision of person-centeredness. Charge the team to collaborate with quality improvement professionals to identify guidelines that the organization will use to support person-centered care, develop comprehensive person-centered care policies and procedures, and measure their success in goal attainment.

When developing or revising policy, consider using guidelines that incorporate characteristics facilitating person-centered care, such as the following (AGS; Berntsen et al.):

• Communication. Communication focuses on interactions among an individual and his or her healthcare providers and caregivers, guided by an up-to-date care plan and an accurate understanding of the individual's motivations, priorities, and preferences. An important aspect of communication and understanding involves a discussion about what the individual wants to achieve as a specific, measurable, and realistic goal of his or her healthcare. Helping individuals to set and achieve—and periodically reevaluate and adjust—their realistic goals of healthcare is an essential part of this process.
• Team-based care. Team composition must be flexible in order to respond to the individual's evolving needs and care and life goals. Consistently assigning certified nursing assistants (CNAs) to individual residents can enhance communication among care team members and improve the individual's quality of care. Consistent assignment allows CNAs and individuals to get to know each other and establish relationships. CNAs who become well acquainted with the residents they are caring for can more readily identify problems or changes that may require action and communicate them to the care team for timely and appropriate follow-up. (Pioneer Network)
• Coordination of care. A person-centered perspective requires a strong element of care coordination to ensure that all contributors work towards a common goal, as identified by the individual healthcare recipient. Care coordination involves explicit efforts to overcome difficulties in transitions between healthcare providers and across care settings. To accomplish this goal, a specific provider should be charged with primary responsibility for the individual's care plan and how the plan is communicated across settings and providers. The plan should identify roles, tasks, and responsibilities, including those taken on by the individual and his or her family or significant other, to ensure seamless healthcare.
• The environment of care. The organization's leadership and culture must support and provide training in person-centered care practices for providers and identify team members best suited to deliver person-centered care.
• Quality assessment and improvement. Measurement tools should focus on individual and caregiver satisfaction, driven by the individual's evaluation of his or her goal attainment. Measures might include integration and communication of health and long-term services and supports; system-level measurement of outcomes (e.g., avoidable hospital admissions); structures (e.g., organizational culture); processes (e.g., individualized care planning); and individual-level outcomes, such as mental health outcomes, healthcare worker stress and strain, family caregiver stress and strain, the individual's satisfaction with his or her role in decision-making and shaping a plan of care, alignment of goals with the care received, and scaling of goal attainment.
  

Aninformation guide and questionnaires regarding person-centered practices in assisted-living and similar long-term care settings and a supporting toolkit can be downloaded without charge from the University of North Carolina at Chapel Hill and the Center for Excellence in Assisted Living. The toolkit includes an in-depth framework for establishing person-centered structures, processes, and outcomes, along with numerous examples that clarify the "what" of person-centeredness. The questionnaires, described as "research quality and evidence based," can be used to measure a facility's person-centeredness and to stimulate and inform quality improvement efforts. (UNC; Zimmerman al.)

Improve Person-Centered Assessment and Care Planning

Action Recommendation: Assemble resources to evaluate, improve, and sustain the facility's implementation of resident assessment and person-centered care planning, and provide staff with tools and training.

Gaps in care that are invisible with event-based care become apparent when evaluated using a long-term, goal-directed care planning process (Berntsen et al.). Indeed, person-centered care planning is a practice some geriatrics experts view as the most significant indicator of quality geriatric care, and it is a regulatory requirement for nursing homes participating in Medicare and Medicaid (AGS; 42 § 483.21).

The following elements of care plans have been identified as incorporating significant attributes of person-centered care (Stanhope):

• Designed to promote recovery rather than only minimizing illness and symptoms
• Based on the person's unique life goals and aspirations
• Focuses on and builds on the person's capacities, strengths, and interests
• Articulates the person's role and the roles of healthcare practitioners and other supports in assisting the person to achieve his or her goals
• Anticipates and allows for uncertainty and set-backs
• Addresses the individual's acute care preferences and anticipates care transitions that may be needed
  

Risk managers responsible for long-term care facilities should be familiar with CMS requirements for resident assessment and person-centered care planning as set forth in detail in the final rule and in CMS surveyor guidance (CMS "Medicare and Medicaid Programs; Reform"; CMS "State Operations Manual").

Generally, CMS requires the facility to comprehensively assess the resident's needs, strengths, goals, life history, and preferences using the resident assessment instrument specified by CMS. The assessment must include, at minimum, discharge planning and documentation of resident and staff participation in the assessment. The assessment process must be based on direct observation and communication with the resident (or resident representative), as well as communication with licensed and nonlicensed direct care staff members on all shifts. (42 CFR § 483.20)

The time frames for conducting an assessment are as follows:

• Within 14 calendar days after admission, excluding readmissions in which the resident's physical or mental condition has not changed in any significant way
• Within 14 calendar days after the facility determines, or should have determined, that the resident's physical or mental condition has changed significantly
• Not less often than once every 12 months
  

Baseline Care Plan

Care planning for long-term care facilities begins with a "baseline care plan" that CMS stipulates must be developed and implemented within 48 hours of admission. The baseline plan must identify and include the resident's goals for admission and desired outcomes and the instructions needed to provide the resident with effective and person-centered care that meets professional standards of quality care (42 CFR § 483.21). The CNA responsible for the resident must participate in planning the baseline care plan, as well as a member of the food and nutrition services staff. A summary of the baseline care plan must be given to the resident or to the resident's representative.

Within seven days of the resident's comprehensive assessment, an interdisciplinary team must develop and implement a "comprehensive person-centered care plan" for the resident. The care plan must be consistent with the residents' rights established in the final rule at 42 CFR § 483.10(c)(2) and § 483.10(c)(3). Members of the interdisciplinary care team participating in the resident's comprehensive care planning must include, at least, individuals in the following roles: attending physician, registered nurse with responsibility for the resident, a nurse aide with responsibility for the resident, a member of the food and nutrition services staff, and (to the extent possible) the resident and the resident's representative (if any).

The resident has the right to identify individuals or roles to be included in the care planning process. Because a resident may develop a close relationship with a certain team member who does not usually attend his or her care conferences, it is a good practice to ask this question each time the resident is reassessed. Another good practice is to ask residents whether they wish family members to be present at the care planning conference and whether they wish to exclude any family members from participating. It is also considered a best practice for family caregivers to personally attend the care planning conference.

Encouraging Participation

CMS guidance for surveyors states that facility staff must support and encourage participation in the care planning process. Encouraging participation may include ensuring that residents, families, or representatives understand the comprehensive care planning process, holding care planning meetings at the time of day when a resident is functioning best, providing sufficient notice in advance of the meeting, scheduling these meetings to accommodate a resident's representative (whether that means conducting the meeting in-person, via a conference call, or by video conferencing), and planning enough time for information exchange and decision-making. (CMS 42 CFR § 483.10[c][2][3])

Objectives and Time Frames

The resident's comprehensive care plan must include measurable objectives and time frames to meet his or her medical, nursing, and mental and psychosocial needs. The plan must include the resident's preference and potential for future discharge and discharge plans. The resident's goals for admission and desired outcomes, as identified to the extent practicable in consultation with the resident and the resident's representatives (if any), must be described in the care plan. If the participation of the resident (or representative) in developing the comprehensive care plan is considered not practicable, an explanation for the nonparticipation must be included in the resident's medical record. The interdisciplinary team must review and revise the person-centered comprehensive care plan after each assessment, including both comprehensive and quarterly review assessments.

Cultural Competence and Trauma-informed Care Planning

CMS requires comprehensive care plans to be culturally competent and trauma informed. For residents who are trauma survivors, including veterans, survivors of large-scale natural and human-caused disasters, Holocaust survivors, and survivors of abuse, the use of trauma-informed approaches is an essential part of person-centered care. For more information, seeSAMHSA's Concept of Trauma and Guidance for a Trauma-Informed Approach from the Substance Abuse and Mental Health Services Administration (U.S. Department of Health and Human Services).

Other Considerations

In other detailed requirements in the final rule, CMS states that facilities must assess residents' strengths as well as their needs, determine what matters to the resident, and incorporate the resident's personal and cultural preferences in developing his or her goals of care. The resident has the right to be informed, in advance, of the proposed care and the type of caregiver or professional who will provide the care. The physician or other healthcare professional must inform the resident of the risks and benefits of the proposed care, of treatment and treatment options, and of alternatives so that the individual can make an informed choice.

Residents have the right to request, refuse, or discontinue treatment; to participate in or refuse to participate in experimental research; and to formulate an advance directive. In a circumstance in which the facility has reason to believe that a resident's representative is making decisions or taking actions that are not in the best interests of the resident, the facility must report such concerns in accordance with state law.

The final rule continues CMS's requirement for nursing homes to include in the care plan the services that are to be furnished to attain or maintain the resident's highest practicable physical, mental, and psychosocial well-being. Some residents may be independently capable of pursuing their own activities without intervention from the facility. CMS guidance for surveyors for compliance with 42 CFR § 483.24(c) of the final rule for nursing facilities explains that this information should be noted in the resident's assessment and identified in the plan of care. (CMS "State Operations Manual")

Activities. Facilities must do more than offer group activities and identify and address changes in a resident's mental state. It is essential to identify, assess, and focus on the individual's strengths and preferences, and offer activities that interest the individual, in order to help each resident reach his or her highest practicable level of psychosocial well-being.

CMS regulations at 42 CFR § 483.24(c)(1) require long-term care facilities to provide, based on the comprehensive assessment and care plan and the preferences of each resident, an ongoing program to support the resident in his or her choice of activities, both facility-sponsored group and individual activities and independent activities. These activities should be designed to meet the interests of and support the person's physical, mental, and psychosocial well-being, encouraging both independence and interaction in the community. CMS guidance for surveyors explains that the intent of the requirement is to ensure that facilities implement an ongoing resident-centered activities program that incorporates the resident's interests, hobbies, and cultural preferences integral to maintaining and/or improving a resident's physical, mental, and psychosocial well-being and independence. Facilities should create opportunities for each resident to lead a meaningful life by supporting his or her security, autonomy, growth, connectedness, identity, joy, and meaning. (CMS "State Operations Manual")

CMS guidance further explains that activities are meaningful to an individual when they reflect his or her interests and lifestyle, are enjoyable to the person, help the person to feel useful, and provide a sense of belonging. Maintaining contact and interaction with the community is an important aspect of a person's well-being and facilitates feelings of connectedness and self-esteem. Involvement in community includes interactions such as assisting the resident to maintain his or her ability to shop independently, attend a community theater or local concerts, visit the library, and participate in community groups. (CMS "State Operations Manual")

Risk managers should encourage the facility to use a validated tool, such as the Preferences for Everyday Living Inventory (PELI), developed with federal and private foundation funding to assist staff in assessing individual preferences for social contact, personal development, leisure activities, living environment, and daily routine. Two versions of PELI are available for nursing homes, a full-length and a shorter version. Both questionnaires are designed to spark conversations with residents about their individual preferences, foster trusting relationships, and promote care plans and service delivery that honor the individual's preferences. PELI tools, tip sheets, and a sample nursing home policy on PELI use are available without charge from Preference Based Living.

Staff competencies and training. Members of interdisciplinary teams involved in resident care planning should be trained in the competencies necessary in developing person-centered care plans. The competencies have been identified by the U.S. Department of Health and Human Services (HHS) as including the following:

• Eliciting what matters to the individual
• Engaging in shared decision-making
• Employing behavioral change techniques to assist the individual in reaching his or her identified goals of care
• Ensuring that the person's psychosocial needs are met
• Negotiating care plans that focus on the individual's desired outcomes
• Modifying care plans as may be required and providing other assistance as may be required and appropriate
  

The competencies apply to a wide variety of healthcare practitioners including physicians, nurses, psychologists, psychiatrists, dentists, pharmacists, social workers, allied health professionals, care coordinators, and other providers who participate in interdisciplinary care planning (HHS).

Various tools and training resources are available to help staff effectively engage in person-centered care planning for individuals living in long-term care facilities. An example of a manual to support an interdisciplinary care planning team was developed by the Polisher Research Institute of the Madlyn and Leonard Abramson Center for Jewish Life, and is available for downloading without charge from the National Nursing Home Quality Improvement Campaign Person-centered Care. (NNHQI)

The University of Pittsburgh provides resources for structured resident interviews, using open- and closed-ended questions. This approach generates the information that staff need to tailor an individual's care plan to his or her preferences in several domains: comfort, security, privacy, relationships, dignity, functional competence, identity, autonomy, meaningful activities, food enjoyment, religious practices, and spiritual well-being. The tool also provides a quantitative measurement of individual- and facility-level outcomes. The program, available to registered users without charge, provides materials, training, and implementation guides.

A training video and training guide developed by the University of Miami, Florida, Scripps Gerontology Center, is another resource for staff engaged in care planning meetings with residents and their family members. The video offers practical tips and strategies for collaboration among the care planning team, residents, and their families to integrate preferences into the care plan.

Facilitate Shared Decision-Making

Action Recommendation: Provide tools and training to support shared decision-making for individuals' healthcare and quality-of-life choices.

Shared decision-making, an essential characteristic of person-centered care, arises in two contexts for residents of long-term care facilities: the clinical context with regard to their healthcare, and with regard to exercise of their autonomy concerning what they consider to be important facets of their lives.

In the clinical context, shared decision-making is a collaborative process in which a provider engages the individual in discussion, providing personalized information about treatment options and potential outcomes, taking into account the best evidence available, including the uncertainties of available treatment options. Ideally, individuals share what is important to them in light of their own values and goals of care, consider the risks and benefits of the treatment options and possible outcomes, and make a decision in collaboration with the provider. (AHRQ)

Beyond Informed Consent

Shared decision-making goes beyond obtaining informed consent. In many jurisdictions, laws around informed consent focus ON the provider, setting a standard that requires physicians to provide information that is similar to or the same as what another qualified physician would give to a patient under similar circumstances. Other jurisdictions employ a "reasonable person" standard, requiring physicians to provide the information that a "reasonable person" in the same circumstances as the involved patient would want to know.

Shared decision-making, in contrast, has been described as "perfected" informed consent—a process that seeks to elicit what is really important to the individual so that each person's decision lines up with his or her values and preferences (Moulton).

In its survey guidance for the final rule for nursing facilities, CMS explains that the rule does not require facilities to adopt a specific approach in determining a resident's capacity to consent. However, the facility administration, nursing, and medical director may wish to consider establishing an ethics committee that includes legal consultation to assist in the development and implementation of policy related to quality of life and/or care, advance directives, intimacy, and relationships.

Shared decision-making may be a new experience for clinicians as well as for residents and their representatives and other involved family members. Individuals may need encouragement or prompting to think about and tell their providers and family members, if appropriate, what is important to them, and clinicians may need training in hearing what individuals communicate to them. Does the individual sound uncertain? Does the individual know what he or she needs to know? Does the individual's decision reflect his or her goals and preferences? (Moulton) Indeed, studies have found wide discrepancies in what individuals want to focus on and what doctors want to focus on. In a survey of patients and their primary care providers, what the providers believed was most important to their patients varied considerably from what the patients themselves identified as their most important concerns (Sepucha et al.).

Shared decision-making. CMS currently requires shared decision-making as a condition of federal provider reimbursement for certain cardiovascular and stroke prophylaxis procedures and lung cancer screening (Merchant et al.). For implantable cardioverter-defibrillator devices (ICDs), CMS requires patients to participate in a shared decision-making interaction with their physician or a designated nonphysician practitioner before undergoing a primary prevention implantation. Although CMS does not require the use of a specific decision tool for ICDs, the agency's coverage decision memo includes an example of a decision tool, funded by the National Institutes on Aging and the Patient-Centered Outcomes Research Institute and developed by the University of Colorado School of Medicine, for patients with heart failure considering an ICD who are at risk for sudden cardiac death. The decision aid is based on published clinical research and interviews with patients and discusses the option for future ICD deactivation.

Quality-of-life decision-making. Shared decision-making for nonclinical quality-of-life decisions may at times require engaging the individual in further exploration and negotiation, such as when an individual's preference for an activity or behavior invokes risk to the individual or others. In its interpretive guidance for surveyors for long-term care facilities, CMS implicitly recognizes shared decision-making as an element of person-centered care, and provides an example addressing individuals' risk-inherent preferences: "When the resident request is something that facility staff feels would place the individual at risk (i.e., the resident chooses not to use the walker, recommended by therapy), is there a process in place to examine the risk/benefit and guide decision-making?" (CMS "State Operations Manual")

When an individual's expressed preference has inherent risk, a best practice is to use a formal standardized and documented process to address how to accommodate the individual's preference with the goal of maximizing his or her autonomy, while mitigating risk and maintaining safety. To assist staff in this regard, risk managers and quality improvement professionals might consider use of a care planning process and toolkit designed by Preference Based Living, developed to help facilities in their efforts to honor individuals' care preferences when those preferences carry sufficient risk that the facility is considering refusing their wishes.

The tool helps to identify and clarify the individual's choice and preference and helps the care planning team assess the individual's decision-making capacity and engage in dialogue with the individual and offer, to the extent possible, ways to accommodate the individual's preference while mitigating potential negative consequences. The tool also provides a documentation form that the team can use to document all steps taken in the process. The tool is used to develop a detailed care plan, monitor and revise the plan when appropriate, and aid in identifying and reviewing trends related to individual choices and preferences that involve safety risk for the purposes of quality improvement planning and risk management review. (Preference Based Living "Honoring")

The issue of honoring an individual's preference despite risks is even more complicated when the individual is living with cognitive or communications challenges or dementia. A resource that discusses best practices in assessing an individual's cognitive function, Assessing Cognition, is available for download without charge from the Hartford Institute for Geriatric Nursing. Honoring individual preferences may present challenges for residents in nursing homes and in other settings, notably assisted living. As individuals' abilities change over time, they may face physical, socioemotional, and environmental barriers to exercising their preferred activities. Another useful tool is Adapting Preferred Activities to Accommodate Resident's Changing Abilities, available for download without charge from the National Nursing Home Quality Improvement Campaign: Person-Centered Care.

Tailor Activities for Individuals with Dementia

Action Recommendation: Provide activity-related interventions for individuals living with dementia.

For residents living with dementia, the lack of engaging activities can cause boredom, loneliness, and frustration, resulting in distress and agitation. CMS interpretive guidance for surveyors for compliance with 42 CFR § 483.24(c) discusses approaches to organizing activities for residents with dementia, explaining that activities must be individualized and customized based on the resident's previous lifestyle (occupation, family, hobbies), preferences, and comforts.

However, CMS explains, when an individual's dementia-related behavior escalates, his or her preferred activities may become less effective or may even cause stress to the resident. Discussing ways that facilities may comply with 42 CFR § 483.24(c), the CMS guidance provides detailed examples of specific activities-related interventions that a facility may provide in an effort to minimize distressed behavior for residents in the following circumstances:

• The resident who exhibits unusual amounts of energy or walking without purpose
• The resident who engages in behaviors not compatible with a therapeutic, homelike environment, including
• The resident who requires a less stimulating environment to discontinue behaviors not welcomed by others in the shared social space
• The resident who goes through others' belongings
• The resident who has withdrawn from previous activities or routines or no longer cares about previous interests and isolates him- or herself in the room or stays in bed most of the day
• The resident who excessively seeks attention from staff or peers
• The resident who lacks awareness of personal safety, such as putting foreign objects in his or her mouth or who is self-destructive and tries to self-harm by cutting or hitting him- or herself, head banging, or causing other injuries to self
• The resident whose own delusional and hallucinatory behavior is stressful to him- or herself
  

CMS guidance states that the outcome for the resident—the aim of which is to decrease or eliminate the behavior—will either validate the activity intervention or suggest the need for a new approach. To assist facilities in providing person-centered care for individuals with dementia, and to prevent abuse of such individuals, CMS provides an online training program called Hand in Hand.

The Alzheimer's Association has provided56 dementia quality care practice recommendations based on a comprehensive review of current evidence, best practices, and expert opinion (Fazio et al.).

Use of "memory boards" showcasing residents' personal memorabilia (family photos, etc.) in long-term care facilities is a useful idea for incorporating patient interests and values. For an interactive look at how memory boards might function in the nursing home, see The Optimized Resident Environment to Mitigate Wandering and Elopement in the guidance article Wandering and Elopement.

Support Resident-Family Councils

Action recommendation: Review best practices for helping residents and families establish and maintain an effective resident-family group or council and designate an executive-level staff member and liaison to assist in providing space for and operationalizing the council.

A resident or family group, as defined by CMS, is an organized council of persons living in a nursing facility, and/or their family members, who meet on a regular basis to support each other; participate in educational activities; discuss concerns about resident care, treatment, and quality of life; plan resident activities; and offer suggestions about facility policies and procedures affecting residents' care, treatment, and quality of life, among other purposes decided by the group (42 CFR § 483.10[f][5]-[7]).

While CMS does not require that residents organize a resident or family group, if one is established, the facility must provide private space for the council to meet when such private space is available. Administrators, risk managers, and other facility leaders should welcome the organization of resident-family councils, as such groups can serve as vehicles through which residents and families can help the facility promote, facilitate, and maintain person-centeredness. CMS requires that facility staff consider recommendations from the resident-family group and attempt to accommodate them, to the extent practicable, including the group's recommendations for developing or changing policies affecting resident care and life. (42 CFR § 483.10[f][5]-[7])

In the final rule, CMS expanded the right to participate in such councils to include resident representatives. Consistent with its focus on person-centered care, CMS emphasizes that it is the resident who has the right to have his or her family meet with other families, rather than the family who has this right, as was the case in the prior regulations. According to CMS, the right of family members to participate in a family group is a result of and subordinate to residents' rights. CMS notes that situations could arise in which a resident would not want to allow a family member, such as an estranged spouse, to join the family council.

CMS's final rule for nursing facilities addresses resident-family councils and provides the following related resident rights (42 CFR § 483.10[j]; 42 CFR § 483.10[f][5]-[7]):

• To organize, participate, and select a resident-family representative for the facility's resident group or resident-family group
• To use "private space" provided by the facility for meetings
• To express grievances without reprisal
• To approve the facility's assistance in notifying residents and family members of upcoming meetings
• To approve a staff person designated by the facility who is responsible for assisting and responding to written requests that result from group meetings
  

Facilities have the following duties:

• To provide "private" space for resident-family council meetings
• To consider the views of the resident-family group
• To act promptly on grievances, recommendations, and invitations of the group concerning issues regarding resident care or life in the facility
• To provide written responses to council grievances, recommendations, and invitations of the group
• To demonstrate in writing the facility's rationale for any decision it makes not to implement a request or suggestion from the group
  

CMS's interpretive guidance for surveyors explains that facility staff, visitors, or other guests may attend resident group or family group meetings only at the group's invitation. The facility must not require the presence of a staff person during meetings nor assign a staff person who is not agreeable to the council to serve as a liaison. Facility staff should not require a family member to leave the group meeting without first obtaining the permission of the group. (CMS "State Operations Manual")

Other resident rights provisions in the final rule require long-term care facilities to designate a person to serve as a grievance official, whose role is to ensure that there is a person who has both the responsibility and authority for guaranteeing that grievances are managed and resolved appropriately. Facilities should ensure that grievances from the resident-family group are handled appropriately by the facility's grievance official, including receiving complaints, leading any investigations by the facility, tracking the progress of the grievance, maintaining the confidentiality of all information associated with a grievance, and coordinating with state and federal agencies as may be necessary depending on the nature of the grievance. (42 CFR § 483.10[j]; 42 CFR § 483.10[f][5]-[7])

Solicit Staff Leaders and Ask Staff for Feedback

Action Recommendation: Solicit leaders who will be models in providing person-centered care and acknowledge and address the person-centered needs of frontline caregivers.

Person-centered care has been described as having five conceptual dimensions: the biopsychosocial perspective; patient or resident‐as‐person; sharing power and responsibility; therapeutic alliance; and last, but not least, the provider‐as‐person (Mead and Bower). Organizational leaders and managers must not forget the provider-as-person component. Leadership must recognize that person-centered care is an interactive process that demands the active engagement and commitment of frontline staff. However, if staff perceive that person-centered care excludes attention to their own needs and well-being, and feel overburdened by demands they perceive as extraordinary, they may feel unwilling or incapable of delivering person-centered care.

Administrators, risk managers, nursing directors, and quality improvement professionals should not overlook the connection between staff experiences and those of residents and their families. When individuals and families sense that facility staff are experiencing undue stress or burnout, they may feel discouraged to actively engage with them. (Frosch et al.)

Consider providing programs and initiatives that focus on and facilitate employee wellness and that empower staff not only to call attention to work-related problems, but also to actively engage in solving them. Such strategies can help reduce staff stress and burnout and create an environment in which residents, families, and staff feel cared for and understood. Organizational leaders should express support for person-centered care openly, consistently, and frequently, and provide positive feedback to staff that recognizes their engagement in person-centered care. Medical directors, nursing directors, and managers should also actively serve as model providers of person-centered care. (Fix et al.)