The Issue in Focus

In recent years, the term "centered" has come to be used in a variety of healthcare phrases. For example, "person-centered care" means placing the person—not the disease or illness—at the center of his or her healthcare. "Patient-centered care" focuses on the part of a person's life when he or she is in direct interaction with a healthcare provider. "Relationship-centered care" is sometimes used when referring to behavioral healthcare planning. "Family-centered care" is a phrase used in obstetrics, pediatric, and critical care, and "resident-centered care" is often used in regard to nursing home care or other long-term care. (Thompson et al.) This guidance article uses the term "person-centered care" in its broadest sense to encompass individual healthcare recipients in all healthcare contexts and settings.

Patient-centered care, a key component of person-centered healthcare, strives to ensure that all persons have timely access to quality care that reflects their values and preferences. Person-centered care focuses on what matters most to individual recipients of healthcare as their needs, healthcare goals, and preferences change over time. (The Health Foundation; Thompson et al.)

Research shows that person-centered care innovations improve individuals' experience of care, improve the care of those who have chronic diseases or multiple illnesses, and achieve better outcomes of care (Bokhour et al.; Mead and Bower; McMillan et al.; Berntsen et al.). As healthcare is increasingly delivered beyond the boundaries of hospitals, person-centered care provides a transformative framework for healthcare that is responsive to individual needs.

According to some experts, patient-centered care holds the potential for cost savings and revenue enhancement (AGS; SCAN Foundation "Person-Centered Care"). In the United States, person-centered care is becoming ingrained in Centers for Medicare and Medicaid (CMS) reimbursement requirements, as well as in federal and state healthcare initiatives.

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 to be one of the founders of modern medicine. (Greenfield et al.) The current shift from provider-driven healthcare toward person-centered care can be traced to various sources, notably Valerie Billingham, a sociologist from the United Kingdom. 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).

Billingham's 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 in the United States, Australia, Canada, New Zealand, Norway, Sweden, and across the globe (Berwick; Barry and Edgman-Levitan; Delbanco et al.; Quinlan; Taylor and Groene). Historically, these transformative efforts are building on dimensions of person-centered care delineated decades ago by the Picker/Commonwealth Program on Patient-Centered Coordinated Care (now the Picker Institute) (Gerteis; Balik et al.).

In 2001, the Institute of Medicine (IOM) (now the National Academy of Medicine) in its publication Crossing the quality 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):

• 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 Standard

Patient-centered care has become the "gold standard" against which the quality of healthcare is measured (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." (The Health Foundation)

At the core of person-centered care is the recognition that attention must be given to patients' problems "in the context of their multimorbidity" (Starfield). Explaining how person-centered care goes beyond patient-centered care, Starfield, a physician-advocate for person-centered healthcare, states that the approach facilitates appropriate care in the context of the totality of the individuals' needs, focusing on the "whole person." Person-centered care requires responding to problems as individuals experience them, "not only as professionals define them." (Starfield) Carefully eliciting what the person's situation is at the moment can lead to a discussion between the individual and the clinician clarifying what aspect of that situation demands action. (Montori)

The shift in focus from the individual's diagnosed illness or behavioral health deficits, which has resulted in many people walking away from the care they need, to a strengths-based, person-centered focus, is a significant development in the culture of healthcare (Stanhope et al.). Studies show that a person's "sense of disempowerment" contributes to decreased engagement in healthcare, a factor associated with worse healthcare outcomes, increased readmissions, and higher costs, particularly for individuals with chronic or multiple illnesses or behavioral healthcare needs (Hibbard et al.).

Healthcare organizations are overcoming challenges to actualize the idea of person-centered care into a clearly attainable goal (Aboumatar et al.). Providers are recognizing that the experiences of patients and families, and what matters to them, are learning tools that provide insight not captured by quantitative data, which can serve as a catalyst in influencing action plans (Luxford et al.).

To "look beyond the chart," for example, several Connecticut community hospitals are participating in the Connecticut Social Health Initiative, a project of the Connecticut Hospital Association that asks hospitals to test different approaches to addressing social factors that influence their patients' health and illness. One hospital asks individuals who come to the emergency department (ED) to complete a questionnaire asking whether their health is affected by factors such as housing or transportation problems, food insecurity, lack of health insurance, need for personal support at home, and lack of a primary care provider. Recognizing that "up to 75 percent of patient outcomes revolve around external economic and social conditions and individual behaviors," the participating healthcare organizations are better able to identify resources and develop programs and activities that address these factors. (Hartford HealthCare)

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 primarily focused on disease management and focuses on the physical, emotional, and social well-being of the whole person.

VHA has established several system‐wide policies that emphasize the delivery of "personalized, proactive, and patient‐driven care." To help advance the initiative, VHA established the Office of Person Centered Care and Cultural Transformation in 2010. (Fix et al.) VHA facilities have been exploring what it takes to shift from a healthcare system designed around points of medical care primarily focused on disease management, to one that is based in a partnership across time focused on the health of the whole individual.

Operationalizing person-centeredness requires, above all, clarity in definition. Even after two decades of use by healthcare policy makers, researchers, and healthcare institutions, "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 patient's diagnosed condition, 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.)

A 2018 survey of healthcare executives in U.S. health systems found that nearly 65% had changed their definition of patient-centered care in the past five years, assigning multiple components to the definition. (Castellucci).

Definition and Core Elements

In an effort to establish standardized, accepted parameters of person-centered care, 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 the American Geriatrics Society (AGS) to collaborate with a team from the Keck School of Medicine of the University of Southern California to provide the evidence base to support a definition of person-centered care and identify its essential elements.

Although the panel arrived at a consensus definition that contemplates the care of the older person, the definition is applicable to the provision of healthcare to individuals of any age. The panel agreed that "person-centered care" means that individuals' values and preferences are elicited and, once expressed, are recognized by their providers, and guide all aspects of the person's healthcare, supporting his or her realistic health and life goals. Person-centered care is achieved through a dynamic relationship among individuals, other people who are important to the patient, and all relevant healthcare providers. This collaboration informs decision-making to the extent that the individual desires. (AGS)

Actualizing Person-Centered Care

Researchers studying person-centered care conducted interviews at several VHA sites designated as "Centers of Innovation," or "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. Based on interviews with 108 employees (22 senior leaders, 42 middle managers, 37 frontline providers, and 7 staff), the researchers identified actions that fostered the implementation of patient-centered care in seven domains (Bokhour et al.):

• Leadership. Cultivate leaders to serve as models for patient-centered care.
• Patient and family engagement. Obtain patients' perspectives in open meetings with leadership; survey patients; invite patients to serve on patient-centered care committees; involve patients in hiring decisions for key positions; interact informally with patients and families; provide direct communication about person-centered initiatives; post signs throughout the facility orienting staff and patients to the innovations driving person-centered cultural change.
• Staff engagement. Provide training to help staff integrate person-centered practices into their tasks; use multiple media modes (including videos, emails, bulletin boards) to convey patients' and families' positive healthcare experiences with person-centered care; conduct multidisciplinary forums in which clinical caregivers discuss social and emotional issues that arise in caring for patients; 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 their providing care; hold all clinical providers equally accountable for providing person-centered care.
• 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.
• Environment of care. Provide single patient rooms in order to improve patient-provider communication; 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," Bokhour et al. concluded. Echoing the findings of other studies (Epstein et al.; Luxford et al.), they comment that achieving person-centered care may depend on informed and involved patients, receptive and responsive health professionals, and a supportive organizational culture. The VHA used the findings of Bokhour et al. to create policy incentives for change by incorporating the seven domains into senior executive performance metrics for all VHA facilities.

Regulations and Standards

Centers for Medicare and Medicaid Services

CMS regulations and federal and state initiatives incorporate and promote some aspects of person-centeredness. CMS reimbursement policy requiring shared decision-making for certain high-cost tests and procedures is seen as one way to better align the interests of healthcare providers and individual healthcare recipients and potentially reduce costs. Medicare coverage policy for implantable cardioverter-defibrillators for primary prevention, for example, 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 (CT) and for left atrial appendage closure (LACC) for stroke prophylaxis in atrial fibrillation. (Merchant et al.; CMS CAG-00439N, CAG-00445N, CAG-00157R4)

Through Hospital Compare, CMS also tracks certain elements of person-centered care, such as whether lab results, tests, and referrals are available electronically to patients. It also compiles patient ratings of how well nurses and physicians communicate with them (including about medications and what to do during recovery at home).

Certain person-centered care attributes are reflected in CMS's Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) patient experience surveys. However, although HCAHPS survey domains are based on information gleaned decades ago from family and patient focus groups, they should not be conflated with person-centered care. New domains reflecting what is important to patients, families, and friends may have emerged as healthcare systems have changed, according to a study of online narrative patient-family experience reviews of a national sample of U.S. hospitals (Bardach et al.).

Online reviews may provide new insights regarding individuals' perceptions of some aspects of hospital quality and patient experience, compared with structured quality assessments provided in HCAHPS. Noting that HCAHPS is a well-validated measure of patient experience, researchers found that three of its eight domains—pain control, communication about medicines, and discharge instruction—appeared in fewer than 10% of online reviews; at the same time, more than 50% of reviews reflected themes not captured in HCAPS. Prevalent non-HCAHPS domains identified in online reviews involved financing (e.g., unexpected costs and difficult interactions with billing departments), inflexibility in healthcare provider policies, observations of unsafe practices, and other patient and family experiences that engendered distrust of individual providers and organizational healthcare providers.

Because online reviews accumulate over time, the study authors suggest that healthcare providers monitor online patient and family comments periodically because they may provide information and insight that can translate to actionable measures of person-centeredness (Bardach et al.). Additional information on this topic is available in the guidance articles Patient Satisfaction and Managing Patient Complaints and Grievances.

Nursing Homes

For nursing homes, CMS regulations (42 CFR 483.10) set forth residents' rights and require comprehensive person-centered care planning (42 CFR 483.21). The resident's care plan must include the resident's goals for admission and desired outcomes. Residents have the right to identify individuals or roles to be included in their care planning process, such as family members or a specific member of the resident's care team.

Other Federal Initiatives

Since 2012, the Partnership for Patients initiative, funded by CMS, has set expectations for person and family engagement within the Hospital Improvement Innovation Networks (HIINs), formerly referred to as Hospital Engagement Networks. The expectations include metrics related to the following:

• Discussing patient and family partnership roles at the beginning of a hospital stay
• Reinforcing these roles at the bedside, both in providing care and in care planning
• Collaborating at the programmatic level (e.g., creating opportunities for patients and families to participate on hospital committees and governing or leadership boards by creating patient-family advisory councils)
  

Federal government quality initiatives do not mandate implementing patient-family advisory councils; however, the initiatives incorporate work with such councils into program goals and objectives (New York State Health Foundation).

State Initiatives and State Mandates

At the state level, a shift toward greater partnership with patients and families is occurring. In Massachusetts, for example, advocacy by the group Health Care for All and its Consumer Health Quality Council was successful in persuading the state to enact legislation requiring all hospitals within the commonwealth to establish patient-family advisory councils to work with hospitals on improving care and the care experience. Since 2008, Massachusetts regulations specify requirements for patient-family advisory councils and include best practices (e.g., at least 50% of the council's members must be current or former patients or family representatives; hospitals must develop written descriptions of the council's purpose, goals, membership eligibility, and member roles and responsibilities; hospitals must write an annual report on the work of the council).

The North Carolina Quality Center facilitates the development of patient and family advisory councils in all hospitals within the state. Currently approximately 80% of North Carolina hospitals have such a council or an equivalent advisory organization (New York State Health Foundation).

The California Medical Assistance Program requires each health plan to establish a family advisory council. In Kansas, Michigan, and South Carolina, Blue Cross/Blue Shield reimbursement for hospitals is based, in part, on the presence of a patient-family advisory council (New York State Health Foundation).

Action Plan

Define Person-Centered Care

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

Engage leadership, clinicians, and frontline staff to develop or adopt a consensus definition of person-centered care that the organization can use to guide its person-centered care policies and initiatives. For example, an expert panel of the American Geriatrics Society (AGS) agreed that "person-centered care" means that individuals' values and preferences are elicited and, once expressed, are recognized by their providers, and guide all aspects of the individual's healthcare, supporting his or her realistic health and life goals. (AGS)

An agreed-upon definition of person-centered care provides a starting point that can help confirm or dispel the notion held by healthcare organizations and individual providers that the care they provide is already person-centered. Healthcare 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 patients and families experience and what patients and families say they experience. (King et al.)

A survey of health-systems chief executive officers conducted in 2018 showed that nearly 65% had changed how they define "patient-centered care" over the past five years, assigning multiple components to the definition. (Castellucci)

Operationalize Person-Centered Policies

Action Recommendation: Identify and evaluate the organization's policies, procedures, and processes that support and incorporate person-centeredness and designate an individual whose job function formally addresses person-centeredness.

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

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

• Healthcare 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
  

Researchers conducted a survey of 1,457 hospitals in the United States about their use in 2013-2014 of a range of recommended person-centered strategies, encompassing three broad categories: organizational practices, bedside practices, and access to information and shared decision-making. The strategies included patient-family advisory councils, online access to medical records, health education materials in other languages, 24-hour visitation policies, nurse shift-change reports at patients' bedsides, use of decision aids, and physician and nurse training in patient engagement.

The study found significant variation in adoption of these person-centered practices. About half of U.S. hospitals were fully engaged in 9 or more of 25 patient and family engagement strategies for which expert consensus exists. The primary barrier to implementation of patient and family engagement practices was competing organizational priorities. (Herrin et al.)

Provider organizations may have already operationalized a number of person-centered care practices that can serve as a basis for further transformation and strategic planning. Risk managers can collaborate with organizational leadership and quality improvement professionals to take inventory of and evaluate the organization's policies and procedures that support person-centered care. Possibilities include the following:

• Making appointment scheduling easy and convenient for patients
• Making available primary care clinicians, whether by phone, in person, or through electronic communication (e.g., secure messaging) and at times that include holidays, nights, and weekends
• Ensuring outpatient and ED wait times are brief
• Conducting bedside multidisciplinary rounds (planning and evaluating patient care with health professionals from a variety of health disciplines) along with patients and/or family members
• Providing person-centered care planning and structuring person-centered care-planning sessions at admission and discharge to include patients' involved family and friends
• Disclosing errors and unanticipated outcomes (and apologizing if warranted)
• Instituting flexible or "anytime" visiting hours
• Making shared decision-making aids available to patients in a variety of formats
• Training staff to elicit the individual's unique needs, preferences, and goals of care, as well as the use of decision aids
• Asking patients to identify their chosen support person and ensuring that admitted inpatients have access to this person
• Using health literacy strategies (e.g., teach back)
• Allowing family members the opportunity to be present during resuscitation or invasive procedures, with the patient's consent, if possible, and accompanied by a trained staff member for support
• Routinely interviewing patients and family when conducting root-cause analyses
• Instituting patient-family advisory councils
• Removing barriers to healthcare access experienced by individuals with physical or cognitive impairment, lack of fluency in the English language, low health literacy, or cultural differences
• Using technology (e.g., mobile apps) to ensure patient access to electronic health records (EHRs) in order to engage and interact with patients
• Training staff in how to respond when people complain

More information on disclosure of errors is available in the guidance article Disclosure of Unanticipated Outcomes in Health Systems​. Also see the guidance articles Health Literacy and Culturally and Linguistically Competent Care.

Designate an individual whose job function is formally concerned with how the organization and staff address person-centeredness and charge this individual to work with quality improvement to evaluate whether policies and procedures incorporate the following characteristics that facilitate person-centered care (AGS; Berntsen et al.):

• Communication. Communication focuses on interactions between the individual and the provider, 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 realistic goals and periodically reevaluate and adjust their healthcare goals 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.
• 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. A specific provider should be charged with primary responsibility for the individual's care plan and with facilitating communication of the plan 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 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), and 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 goal attainment.

Provide Person-Centered Care Planning

Action Recommendation: Engage quality improvement professionals to implement a process for developing person-centered care plans and staff training as appropriate.

Action Recommendation: Monitor and evaluate person-centered planning activities as an integral component of quality improvement activities.

Person-centered care planning is a goal-directed healthcare planning process in which individuals enter into a partnership with their care providers to provide quality care that is adapted to the individual's circumstances, priorities, and goals. (Stanhope et al.) Gaps in care that are invisible with event-based healthcare become apparent when evaluated in the course of a long-term, goal-directed healthcare planning process (Berntsen et al.). Indeed, some experts view person-centered care planning as the most significant indicator of quality of care (AGS).

Person-centered care planning has been shown to lead to improvements in certain indicators of physical and mental health status and in people's capability to self-manage their condition, compared with conventional care, according to an analysis of 19 studies involving 10,856 individuals that included 16 person-centered care planning interventions in primary care or community settings and 3 in hospital clinic settings (Coulter et al.).

The collaborative process of care planning should start with identifying, assessing, and negotiating the individual's overarching goals of care, and build a care plan based on relevant evidence-based guidelines (Berntsen et al.). The planning process should also involve the people in the individual's life whom he or she identifies as supportive of his or her goals of healthcare or recovery from illness, including clinical practitioners and family caregivers. The goal is to develop and implement an actionable plan to assist the person in achieving his or her healthcare goals.

For persons living with multiple chronic conditions, for example, a person-centered care plan addresses the individual's multiple physical health problems, medication management, development of treatment plans, home- and community-based services, psychosocial needs, and coordination of financial resources. A partnership is formed between the individual and his or her involved family members and caregivers and the healthcare team, including physician specialists. The care plan should apply the best evidence-based quality care focusing on the context in which the individual is managing his or her chronic conditions on a daily basis, and based on the individual's treatment and outcome goals. Engaging in person-centered care planning means changing the question from "What is the matter?" to "What matters to you?" (HHS)

Researchers who studied a model of person-centered integrated care found system failures in identifying individuals' long-term goals, providing shared long-term multimorbidity care plans, monitoring care delivery, and evaluating whether the goals of care were met. As a starting point, the researchers asked 19 strategically chosen individuals with chronic and complex healthcare needs what their goals of care were. Some respondents were surprised or puzzled at the question—the goals of care seemed either too obvious (e.g., "My goal is to survive my cancer"), or the individual felt that health professionals should be the ones who set health-related goals. Shifting the question of goals to the phrase, "What matters to you?" gave richer and more immediate insights into areas of the individual's life threatened by health issues.

The individual's goals were used to identify the multidisciplinary team needed to assess the patient's health issues. Once the individual's goals were made clear, the team produced a comprehensive care plan aimed at goal attainment. (Berntsen et al.)

Clinicians and other healthcare providers should be trained in the competencies necessary for developing person-centered care plans. The competencies required include eliciting what matters to the individual, engaging in shared decision-making, employing behavioral-change techniques to assist the individual in reaching  identified goals of care, ensuring that his or her psychosocial needs are met, negotiating care plans that focus on the individual's desired outcomes, modifying care plans as changes occur, and providing other assistance (e.g., assistance in obtaining available health insurance). 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 interdisciplinary teams. (HHS)

Facilitate Shared Decision-Making

Action Recommendation: Encourage and train clinicians to engage in shared decision-making.

Action Recommendation: Develop processes for integrating shared decision-making interactions into practice and require documentation of the shared decision-making encounter.

Action Recommendation: Make evidence-based decision aids and decision aids suggested by CMS in national coverage determinations available to staff and individuals.

Shared decision-making has been described as a collaborative process in which a healthcare provider engages the patient in discussion and provides personalized information about the individual's treatment options and potential outcomes, taking into account the best evidence available, including the uncertainties of available treatment options. Ideally, the individual shares what is important to him or her in light of his or her values and goals of care, considers the risks and benefits of the treatment options and possible outcomes, and makes a decision in collaboration with the physician. (AHRQ)

A Massachusetts academic hospital that is part of a large health system integrated shared decision-making into practice by focusing on three elements: developing an organizational culture and encouraging providers to be receptive to and skilled in shared decision-making conversations; using patient decision aids; and providing facilitative infrastructure and resources at the hospital, its physician practices, and community health centers. Between 2005 and 2015, more than 900 clinicians and other staff members were trained in shared decision-making, and more than 28,000 provider orders for decision aids were placed through the EHR system. (Sepucha et al.)

The organization provides medical staff training in an hour-long session that offers continuing medical education credit. Attendees watch a video decision aid, review provider- and practice-level data on the use of patient decision aids, discuss challenges and concerns with their practice leaders and colleagues, and learn about the EHR-enabled ordering program that makes approximately 40 decision aids available to providers and patients. Patients who use the hospital's patient portal receive an email message with a link that allows them to access the decision aids online; patients who do not use the patient portal are sent a DVD and booklet containing the same information via U.S. mail.

Individuals seen at the organization's community health centers are empowered to order decision aids that interest them in advance of their annual wellness visit. A pilot project at one of the organization's health centers that serves a patient population of largely working class immigrants from Cambodia, Latin America, and Italy demonstrated a significant unmet need for decision aids. Patients receive a reminder letter to schedule their annual visit, along with a list of commonly used patient decision aids and an order sheet from which they may select two decision aids. Patients return the order sheet to the clinic via U.S. mail, using a stamped return envelope. The decision aids they chose are mailed to them in advance of their scheduled visit.

Analysis of the project showed a divergence between the interests of patients and clinicians in that the decision aids ordered most frequently by patients were on different topics than those ordered most frequently by clinicians. The top three decision aids ordered by patients concerned chronic low back pain, diabetes, and anxiety, whereas physicians most often ordered decision aids for prostate cancer screening, colon cancer screening, and advance directives. (Sepucha et al.) For more information, see Decision Aids.

Beyond Informed Consent

Shared decision-making reaches beyond a jurisdiction's legal requirements for informed consent. In many jurisdictions, the law on informed consent focuses on the provider, requiring that physicians provide to patients the information that another qualified physician would give to a patient under like or similar circumstances. Other jurisdictions employ a "reasonable patient" standard requiring physicians to disclose information that a "reasonable" patient in the same circumstances would want to know.

In contrast, shared decision-making has been described as "perfected" informed consent—a process that seeks to elicit what is really important to each patient so that each patient's decision lines up with his or her values and preferences (Moulton). For more information, see the guidance article Informed Consent in Acute Care.

Shared decision-making may be a new experience for clinicians and patients. Some people may need to be encouraged to tell physicians what is important to them, and physicians may need training in hearing what individuals communicate to them. Does the patient sound uncertain? Does the patient know what he or she needs to know? Does the patient'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 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.).

Wealthy, highly educated individuals participating in a focus group reported that their ability to ask questions and collaborate with their physician in shared decision-making depended heavily on their physicians. Some participants reported feeling powerless even while they attempted to overcome what they perceived as their physicians' "authoritarian" behavior. People who wished to be more assertive in discussions with their physicians reported fear of negative consequences, such as being labeled indelibly as a "difficult patient." (Frosch et al.)

Clinicians also need to be aware of the power imbalance inherent in the clinician-patient relationship. The more important a healthcare decision is, "the more entrenched the socially sanctioned roles of patient and clinician can become." As a result, many patients are susceptible to "hostage bargaining syndrome," whereby they negotiate for their healthcare from a position of fear and confusion. Individuals may understate a concern, ask for less than what they want or need, or even keep silent against their better judgment. (Berry et al.)

When individuals succumb to "learned helplessness," they are unable to engage in shared decision-making. Clinicians can help individuals feel that they are safe in communicating their concerns and priorities, asking questions about clinical options, and talking about what is important to them. Physicians have the power to arrest and reverse "hostage bargaining syndrome" by appreciating, paradoxically, how patients' perceptions of physicians' power as experts play a central role in the care physicians provide. (Berry et al.)

Shared decision-making is also impaired when patients perceive that their physicians are inhibited by time constraints (Frosch et al.). Studies show that shorter office visits impede shared decision-making. Researchers found that time constraint is a barrier to shared decision-making. With less time, patients are more reluctant to ask questions, and providers pay less attention to patients' emotional and psychological concerns. Time constraint adversely affects patient education and is associated with lower levels of patient confidence and coping (Berry et al.). Research also shows that physicians' use of EHRs can hinder face-to-face discussion and "listening" (O'Malley et al.).

Decision Aids

Decision aids are interventions that support patients by making their decisions explicit, provide information about healthcare options and associated potential benefits and harms, and help to clarify congruence between the individual's decisions and personal values.

Decision aids should not be conflated with patient education materials. Educational materials are particularly useful in helping people to understand their diagnosis, treatment, and management in general terms, but they do not focus on decision points and do not necessarily help individuals participate in shared decision-making. Researchers reviewing materials that U.S. hospitals provided to patients as "decision aids" in 2013-2014 found that a large majority of the materials were simply educational materials, such as pamphlets, that did not fit the definition of a decision aid. (Herrin et al.)

Also, patient decision aids supplement, but should not replace, clinicians' counseling about individual healthcare options. In general, a decision aid explicitly states the decision that the individual needs to consider; provides evidence‐based information about a health condition; identifies the options, associated benefits, harms, probabilities, and scientific uncertainties; and helps individuals recognize the values‐sensitive nature of the decision they face and clarify the value they place on the potential benefits and harms. Patient decision aids may describe the options in enough detail that individuals can imagine what it is like to experience the physical, emotional, and social effects of a treatment option, or the aids may guide individuals to consider which benefits and harms are most important to them. (Stacey et al.)

Often, individuals must make a healthcare decision that involves an intervention for which there is no universal agreement or evidence base (Barry and Edgman-Levitan). Thus, it is not surprising that decision aids for such interventions have limited effects on health outcomes. For example, when men with localized prostate cancer consider active treatment options, their health outcomes can be different, depending on whether they choose surgery, which carries higher risks of impotence, or radiation therapy, which carries higher risks of long-term bowel irritation. Therefore, the key question with regard to intervention is whether patients experience the health outcomes they prefer and avoid the outcomes to which they are averse. (Stacey et al.)

A 2017 Cochrane review showed that when patients used shared decision aids, their knowledge, understanding of risk, and likelihood of receiving care aligned with their values improved. Compared with usual care in many varied decision contexts, people who used decision aids felt better informed and more able to clearly identify their values, had a more accurate perception of risk, and were more likely to participate actively in healthcare decision-making. (Stacey et al.)

To address quality concerns about decision aids, a team of researchers evaluated 105 studies involving 31,043 people who used decision aids that focused on 50 different decisions, most commonly about surgery, screening (e.g., prostate cancer, colon cancer, prenatal), genetic testing, and medication treatments (e.g., diabetes, atrial fibrillation). The researchers evaluated the decision aids for clinical content, development process, and effectiveness in helping individuals participate in shared decision-making. Informed by a consensus of international researchers about the quality of decision aids used in the United States, Canada, the United Kingdom, Europe, Australia, and China, the Washington State Health Care Authority in 2016 launched the first program for certifying patient decision aids. (Stacey et al.; Washington State Health Care Authority).

Integrating shared decision-making into practice and providing resources for appropriate decision aids is becoming increasingly important in light of CMS's reimbursement policy. CMS currently requires shared decision-making as a condition of coverage for three interventions:

• Implantable cardioverter-defibrillators (ICDs)
• Lung cancer screening with low-dose CT
• Left atrial appendage closure for stroke prophylaxis in atrial fibrillation
  

For 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 any 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. (University of Colorado)

For CT lung cancer screening, CMS requires a face-to-face shared decision visit between the individual and the primary care provider in which specific information is elicited relating to the individual's current and past cigarette use and the benefits and harms of CT lung screening, and counseling is provided for tobacco cessation. The shared decision-making interaction must be documented for the patient to be eligible for coverage. As part of the counseling and shared decision-making visit, CMS requires that, among other things, shared decision-making include the use of one or more decision aids and that the shared decision-making visit include discussion of benefits, harms, follow-up diagnostic testing, overdiagnosis, false-positive rates, and total radiation exposure. Although CMS does not identify a specific decision aid that must be used, the agency states that the National Institutes of Health's National Cancer Institute has developed a decision aid/tool for CT lung screening. (NCI)

For LAAC, CMS acknowledges that "no evidence-based shared decision-making tool . . . has been published." However, evidence-based decision tools are available to help individuals decide whether to take an anticoagulant to reduce their risk of stroke. (NICE; ACP; Eckman et al.)

CMS requires that shared decision-making for LAAC be conducted by an independent physician who does not perform the LAAC procedure. Writing in JAMA, several physicians shared their view that although independent physicians are unbiased, they may not have procedure-specific expertise, and they may not know the patient, making it difficult to elicit the individual's preferences and address contextual factors that may affect his or her decision-making (e.g., health literacy or social situation). In addition, physicians might selectively refer the patient to a doctor who is not likely to contradict the recommendation of the individual's physician.

The requirement for separate encounters might also require some patients to make additional visits (for some, traveling long distances), possibly resulting in additional costs. The authors also note additional requirements: the shared decision-making interaction must be incorporated into the clinical workflow; the clinician who will be responsible for conducting the interaction needs to be identified; and the shared decision-making interaction must be documented in order to demonstrate compliance with CMS's requirements. (Merchant et al.)

Support Staff and Ask Staff for Feedback

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

Encourage the organization to incorporate domains of person-centered care into senior executive performance metrics. Leadership should recognize and advance at least the following five domains of person-centered care identified by healthcare policy experts (Mead and Bower):

• The biopsychosocial perspective
• The patient‐as‐person
• Sharing power and responsibility
• Therapeutic alliance
• The provider‐as‐person
  

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 of clinicians, other healthcare providers, and frontline staff. When physicians, nurses, and other frontline staff perceive that person-centered care does not include attention to their own needs and well-being, they may feel unwilling or incapable of meeting the demands inherent in providing person-centered care. Leadership should not miss the connection between staff experiences and those of patients and their families. Individuals and families who sense that their healthcare providers are experiencing undue stress, or burnout, may feel discouraged from actively engaging with them.

Provide programs and initiatives that facilitate employee wellness and that empower staff not only to call attention to problems but to actively engage in solving them. Such strategies can help reduce staff stress and burnout and create an environment in which patients, 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. Physician leaders and middle managers should also actively serve as model providers of person-centered care for clinicians, nurses, and other healthcare providers. (Fix et al.)

Establish Patient-Family Advisory Councils 

Action recommendation: Review best practices for establishing patient-family advisory councils, develop an implementation plan, and designate an executive-level staff member and liaison person to operationalize the patient- family advisory council.

Hospital patient-family advisory councils are an important way to engage patients and families to advance the organization's provision of person-centered care. Typically such councils are formal groups that meet regularly for active collaboration among hospital leaders, clinicians, staff, and patient and family members on policy and program decisions. Advisors share their insights and perspectives about the experience of care, offer suggestions for change and improvement, provide feedback on existing programs, suggest innovations, and influence hospital leadership, strategies, and operations.

A patient-family advisory council established in a university-affiliated medical center in Maryland, for example, provided patient- and family-centered feedback on a variety of matters, including use of white boards, an enhanced "recovery after surgery" project, a "pain and comfort" menu from which the patient may make choices, the functionality of the organization's personal electronic patient health record, wayfinding, exterior signage and parking signage, and Patient-Centered Outcomes Research Institute grants. (Johns Hopkins)

The New York State Health Foundation engaged the Institute for Patient- and Family-Centered Care to conduct a research study to assess the prevalence and functioning of such councils in New York State. Of the 110 hospitals that responded to the survey, 59% had a patient-family advisory council in place; an additional 12% reported that they were developing such councils. Only 29% of hospitals had "high-performing" councils, defined in terms of the council's influence on hospital leadership, strategies, and operations. High-performing councils were more likely to provide orientation and training; to be integrated into other committees; and to evaluate their efforts.

Hospitals with high-performing councils had significantly higher HCAHPS scores in terms of patients' likelihood to recommend, while hospitals with lower-performing councils performed better than hospitals with none. With regard to performance on CMS quality and safety metrics, hospitals with high-performing councils had lower rates of pressure injuries, sepsis and septic shock, and 30-day hospital-wide readmissions than hospitals with lower-performing councils.

The researchers identified best practices for patient-family advisory council structure and membership, as follows (New York State Health Foundation):

• Designation of an executive sponsor and staff liaison
• A defined relationship between the council and the hospital or health system leadership and board of directors
• More than 50% of the council's members representative of the patient populations served
• Ongoing efforts to recruit patients and families to council membership, using strategies designed to ensure that membership reflects the diversity of communities served
• Onboarding and orientation provided to all council members, covering the key elements of the role of the council and orienting members to hospital quality and safety work
• Regular meetings (e.g., 10 times per year)
• An agenda for each meeting, ideally developed by the chair or cochair, or by the council
• Assistance provided to advisory council members (e.g., language and translation services, childcare, parking or transportation reimbursement, and stipends) to encourage participation, especially among disadvantaged populations
• Creation of a variety of ways to serve as an advisor (e.g., virtual opportunities and full membership on key committees, quality improvement and safety teams, and governing boards)
• Provision of feedback to the council about the impact of its work
• Annual evaluation to measure the outcomes and impact of council activities and initiatives
• Preparation of an annual report summarizing the council's accomplishments and plans that is shared broadly with the health system and the community
  

Assess the Built Environment of Care

Action Recommendation: Involve facility and building management in assessing the environment of care for physical comfort, safety, and access.

Tour the organization's facilities with facility managers to ensure that, at minimum, the environment of care provides convenient, safe parking accommodations; security that is visible but not unduly intrusive; a well-lit and easy to locate ED entrance and welcoming main lobby; waiting areas with adequate, clean, comfortable seating; quiet spaces that patients, visitors, and staff can use; an information desk staffed by attentive and friendly people who can provide wayfinding help and otherwise assist patients and visitors; signs that are visible and in languages that reflect the patient population; a cafeteria or food service area, available around the clock, that provides a variety of healthful foods and beverages; and a chapel or other contemplative space.

Care settings should be of adequate size to accommodate the presence and appropriate participation of patients' family members or support persons, including extra seating. Patient rooms should provide adequate accommodations for visitors.

Ensure that the layout and furnishing of examination rooms do not impede communication between the physician and the patient. Determine that computer screen placement for accessing and entering information into the EHR and workflow patterns are such that they facilitate communication between the physician and the patient.

Other facility design attributes that support person-centered care include natural lighting; courtyards; outdoor healing gardens; use of color and artwork in waiting areas and clinical spaces; quiet spaces where patients, staff, and families can interact; patient libraries; internet access; kitchens and patient and visitor lounges; activity rooms; and overnight accommodation for families.

Attention to noise is also crucial for quality care and patient safety, as well as patient comfort. Background noise is emitted from bedside alarms and other electronic equipment, as well as from hallway activities, staff and visitor conversations, blaring televisions, ringing phones, ice machines, overhead pagers, outside traffic, ambulance sirens, and helicopter motors. Extraneous noise in the operating room has been cited as stressful to patients and can also create a risk to patient safety (Hasfeldt et al.). Studies have shown that hospital noise disrupts patients' sleep by affecting cortical brain activity and cardiovascular function, adding evidence that improving acoustic environments not only supports healing but is crucial to the provision of safe and quality care (Buxton et al.).

Additional Materials

"What Matters to Me" Boards

Individuals' personal characteristics, health condition, and previous experience with healthcare affect the extent to which they want or are able to participate in their healthcare and to partner and communicate with their healthcare providers. The simplest way to learn what matters to every patient, every time, is to ask, "What do you really care about that we're not doing for you in a consistent way?" and then find a way of doing it. This simple question is taking root as a fundamental element of quality improvement for person-centered care in the United Kingdom. (The Health Foundation; McNally)

In the hospital setting, nurses perform many patient-related duties at the bedside, providing an opportunity for effective person-centered communication between the nurse and the patient. An intervention developed in the United Kingdom to support person-centered care in the hospital setting is the use of "What Matters to Me" boards. These information boards are placed above patient beds to make sure every care provider can see what is most important to each patient. The boards are used to record and communicate patients' preferences and priorities (e.g., preferences about pain relief, wishing not to be disturbed when they are asleep, decisions about treatment options). The boards function as a point of reference to help nurses and other frontline staff get to know their patients better and communicate information that might not otherwise be shared at handovers. (The Health Foundation; McNally)

Use of "memory boards" showcasing residents' personal memorabilia (family photos, etc.) in long-term care facilities is a similar 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.