“Patient-centered care” is a core principle in health care, and the concept continues to move from innovation to expectation and in some cases, even regulation. But what exactly does it mean to provide patient-centered care, and how does one achieve this, at either the individual or institutional level? This chapter explores the term patient-centered, and current thinking about how to strengthen the partnership between patients and providers in the delivery of care. Throughout, emphasis is given to those innovations most relevant to the hospitalized patient.
DEFINING PATIENT-CENTERED CARE
While the term patient centered now appears commonly in both medical literature and lay media, one may encounter a variety of definitions for this phrase. Perhaps the most “official” definition is the one proposed by the Institute of Medicine (IOM) in the landmark 2001 document Crossing the Quality Chasm. It describes patient-centered care as “…care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” The IOM goes on to describe patient-centered care as one of the six key “aims for improvement” for quality of care. As such it is presented as an intrinsic value, fundamental and irrefutable, as opposed to a system property with a known association with better outcomes. The concept has been advanced in the form of slogans such as “Nothing about me without me,” “Every patient is the only patient,” “You’re a person before you’re a patient,” and “Human First.” At its core, patient-centered care can be described as treating each patient with the respect and dignity that every human being inherently deserves.
Overlapping terms appear in the both the lay and medical literature, including patient partnering and family-centered care. In this chapter, the term “patient-centered” will be used to encompass the general concept of making care delivery more responsive to the needs and wishes of the individual patient and his or her family. Family can be defined broadly as all the individuals whom the patient wants involved in his or her care regardless of whether they are related biologically, legally, or otherwise. From this definition, it follows that if a patient has any family, patient-centered care must include them.
The construct presumes that care delivery under current models is not adequately patient-centered. The IOM “Chasm” report conceptualizes the health care delivery system as in evolution, from a clinician-centric, poorly coordinated and non–evidence-based model to a patient-centric, integrated system that consistently applies scientifically supported interventions. In “clinician-centric” models, the patient plays a passive role in decision making regarding choice, timing, and settings of care delivery; these are the exclusive domain of the providers, and those same providers decide what information reaches the patient. Stories abound in the lay and medical literature of patients feeling at the mercy of the medical system, unable to exert control over their own care. However, it is hard to find a quantitative assessment of the current state of patient-centered care (or lack thereof) in the US health care system. Some insights can be gleaned from national results of the Hospital Consumer Assessment of Health Care Providers and Systems inpatient survey distributed by the Centers for Medicare and Medicaid Services (CMS). Although scores have been improving, 18% of patients still report “never or sometimes” receiving communication about new medications and their side effects, and 9% answer similarly to questions about the responsiveness of hospital staff (composite scores, July 2012-June 2013 data).
The IOM describes the fully evolved stage of organizational development as characterized by the patient and family being part of the health care team, with full access to information and the ability to exercise as much control over care as desired. What specific actions can institutions and providers take to advance toward this model? These can be divided into three key properties: (1) free flow of information, (2) partnering around individual patient needs, and (3) involving patients in system design.
Patients are not truly partners in their own care if information, either about themselves or the care they are receiving, is only selectively available. The IOM suggests two “rules for redesign” to achieve transparency:
The first rule recognizes that patients should have the ability to receive complete and understandable information about their condition, in real time. The second “rule” establishes that patients are entitled to information about the care itself, including the performance of the health care system and its providers, as well as the approach to care and its justification. While these concepts may seem self-evident, the health care system has not traditionally been aligned with these rules. Prior to passage of The Health Insurance Portability and Accountability Act (HIPAA), exchange of medical documentation sometimes required that a patient obtain a subpoena. Today, care still remains far from transparent: published reports suggest the majority of hospitalized patients are unable to easily determine the name of the physician in charge of their care, let alone the details of the care plan. Fortunately, recent innovations are improving information exchange with patients and changing longstanding traditions of care delivery.
OPEN COMMUNICATION OF THE PLAN OF CARE
Typically, the discussion, development, and implementation of a hospitalized patient’s plan of care occur without the patient’s involvement. Communication of the plan of care is a separate responsibility of the physician, occurring most often as an unstructured verbal communication. There is thus no system that guarantees that the patient understands the plan, or has had the chance to ask questions. Approaches that provide structure to these exchanges, and thus more reliable sharing of information, are appearing in the interest of both patient-centered care and patient safety. For example, the Veterans Health Administration introduced “The Daily Plan,” a structured document reviewed with the patient each day of his or her hospitalization. It contains information such as medications, scheduled procedures, and diet, reviewed with the patient each day of his or her hospitalization. The expectation is this kind of intervention could improve provider-patient information exchange in both directions, provide an opportunity for patients to ask questions and share concerns, and identify problems that might cause risks to safety or make the provider’s plan ineffective or infeasible. Reported experience shows that the large majority of patients receiving such a plan perceive a better understanding of their hospitalization, have a better ability to ask questions, and a higher level of comfort with their hospital stay. Similar positive findings have been seen by introducing structured patient involvement with hospital discharge planning. A key element of these new models is some mechanism for “closed loop communication,” meaning there is verification that the communication has been received, understood, and any remaining questions have been answered.
Several hospitals have actually embedded communication with patients into the work model by adapting bedside “rounds” to include the patient and/or family member. In a typical format, the patient and/or family member is oriented to the process of rounds and is given the option to participate. On rounds, the patient/family member is introduced to the members of the team, hears the presentation of the clinical situation and is invited to participate in developing the plan. Teaching, including discussion of the condition and demonstration of physical findings, occurs with the patient’s permission. For patients, such programs have been associated with higher satisfaction, better clinical outcomes, and shorter lengths of stay. Health care workers, in turn, have reported higher satisfaction with work and with the quality of some aspects of teaching in academic medical centers, but have also identified challenges that have inhibited widespread adoption of such processes.
COMMUNICATION AND RESOLUTION IN SETTING OF ADVERSE EVENTS
Flow of information should not stop if care does not go as planned. Patients who experience an adverse event are ethically entitled to receive information about that event, and typically respond favorably to “I’m sorry” in those situations where apology is indeed appropriate. Unfortunately, open communication with patients about medical error has been inhibited by a conventional wisdom, held for decades, that open disclosure and apology would increase risk of litigation. There is a growing body of evidence that this is a false premise, and that open communication following error is not only ethically correct, but is likely to decrease malpractice costs since it provides an opportunity to bring issues to resolution without involving the court system. A growing number of institutions are now implementing a systematized approach to harm events that involves open communication, root cause analysis, and early resolution if the analysis determines that the harm was preventable. Many of these programs are now reporting a coincident improvement in malpractice costs. Such programs are also more patient-centered in that time to resolution is quicker, and nonmonetary elements can be part of the resolution. For example, patients suffering harm often look for an institutional commitment to decrease risk of a similar harm event occurring in the future.
Remaining patient-centered in the context of adverse events requires that an institution establish an unambiguous position on the topic, and communicate that position to the workforce. Mechanisms must be put in place to educate and support clinicians in the process of disclosure and apology, which is often an ongoing event, requiring multiple communications as facts become available. For any given clinician, personal involvement in disclosing an error to a patient will be a rare event, so systems for “just in time” support and training must be available. Many institutions address this by creating a resource group with specific interest and training in best practice for communication, empathy, and apology (where appropriate). Physicians, nurses, social workers, patient safety professionals could all potentially serve in such a role. In the setting of an adverse event, the expert resource can support the clinicians involved and help determine the best timing, setting and participants for communicating the event (see Chapter 20: Preventing and Managing Adverse Patient Events).
ACCESS TO MEDICAL DOCUMENTATION
Medical documentation has traditionally been the purview of the clinicians and not the patient. The passage of HIPAA in 1996 established that patients must be permitted to review and amend their medical records, but access to the record is still largely based on an exception process, the record being provided when there is an active request by the patient, which in practice occurs rarely. On the other hand, surveys show that when given the option to view the clinical record, the large majority of patients will accept. Many institutions have responded with systems that allow patients to directly access elements of clinical documentation electronically. This is often limited to objective content such as problem lists, medication lists, and test results.
Ready access to clinician documentation is now gaining momentum. A formal, multi-institutional trial of “OpenNotes,” a system for electronically sharing outpatient clinical documentation, demonstrated that more than two-thirds of patients reported better understanding of their medical conditions, and felt more in control of their care. At the same time, only 3% of physicians reported spending more time answering patient questions outside of visits. The clinical impact of more open access to documentation is now getting more attention. For example, physicians in the OpenNotes trial report they are more attentive to the accuracy of their documentation, and the approach to documentation of sensitive conditions such as cancer, mental health, and substance abuse. Results of the OpenNotes trial were compelling enough that all three participating institutions have adopted the program as standard practice throughout their ambulatory operations. More research is needed in areas such as the potential for open sharing of clinical documentation to better identify medical error, and/or to improve clinical outcomes.
PATIENT-GENERATED HEALTH DATA
Patient-generated health data (PGHD) include biometric data (eg, home blood pressure readings), medical history, symptoms, and administrative information (eg, the name of a surrogate medical decision maker). They are recorded by patients, as opposed to providers, and the growth of Internet-enabled devices has encouraged a movement to collect more PGHD. Proponents of PGHD hope that it will engage patients more in their care and believe that it could shift some of the burden of data collection from providers during time-limited encounters to patients outside of such encounters, freeing patients and providers to spend their time together in more valuable ways, such as more deeply engaging in the shared decision-making process. However, there are many challenges. Information technology professionals must ensure that PGHD interfaces are user friendly, facilitate high-quality data collection, and maintain appropriate privacy. Simultaneously, it is important to ensure maximal interoperability between different electronic medical record systems. Frontline clinicians must be involved in the design of PGHD systems so that the new streams of data will fit into their busy workflows. And all parties must develop ways of reviewing PGHD, especially prior to including them in patients’ medical records.
Current standards for assessment of clinical outcomes are based largely on objective measures and rarely include the patient’s perspective. For example, outcome of a joint replacement surgery might be evaluated on the basis of range of motion or occurrence of a complication, without formal capture of what the patient has experienced in terms of pain relief or ability to pursue daily activities. For some time, evaluation of clinical outcomes in the research domain has included such patient-reported outcomes (PROs). Now, attention to PROs is growing as part of routine clinical practice, spurred in part by provisions in the US Patient Protection and Affordable Care Act, which specifies a focus on PROs and launched the Patient-Centered Outcomes Research Institute. At the same time, the increasing presence of electronic formats for collecting and storing survey data is fueling the ability to collect PROs.
PROs might include information about which outcomes matter most to patients as well as actual measures of symptoms, functional status, or quality of life. Collection of such outcomes is especially relevant to conditions involving longitudinal care such as cancer, heart disease, mental illness, or arthritis. There is growing interest in developing standardized instruments for collecting PROs, and formal guidance from the National Quality Forum on valid design of PRO-performance measures has been issued. Some of the best examples of broad implementation of PROs in clinical practice come from outside the United States. The National Health Service in the United Kingdom, for example, collects information on symptoms and functional status for all patients undergoing certain elective surgeries.
ACCESS TO INFORMATION ON CLINICAL PERFORMANCE
There is a slow but undeniable trend toward sharing more information about clinical performance with the lay community. Health care institutions have resisted this trend, on the basis that clinical performance data are too difficult to correctly interpret, cannot be adequately risk adjusted, and/or will perversely impact clinician behavior. Thus, much of the initial effort to make performance data public has been involuntary, driven by regulators, creditors, or insurers, each of which may have its own unique requirements for public reporting of clinical performance. As a result, clinical information available in the public domain can vary dramatically from state to state. At a federal level, the patient can find a growing list of measures of hospital performance disseminated by CMS via their website, http://www.medicare.gov/hospitalcompare/search.html.
Simultaneously, many institutions are now choosing to voluntarily share information on clinical performance (Figure 16-1). This trend is most readily apparent as a component of hospital websites, but some hospitals are also choosing to share information in the form of mailings or posted material within the facility (illustration). Reasons to pursue this strategy likely vary by institution, but might include (1) the ability to provide context and explanation to information already being shared elsewhere, (2) the ability to determine and expand the portfolio of information being shared, (3) the belief that sharing clinical performance information is a good business strategy, (4) the belief that sharing clinical performance information is consistent with institutional values. The result is that a current survey of hospital websites will demonstrate a broad range of approaches to transparency: some provide a great breadth of information on performance, others almost none. Some hospitals provide metrics with a minimal amount of explanatory information, while others appear to go to great lengths to make the information accessible and available to a lay audience.
Public display of performance on several clinical outcomes outside of an Intensive Care Unit. The format allows for the information to be continuously updated. (Courtesy of Beth Israel Deaconess Medical Center, Boston, MA.)
Few data are available regarding the degree to which patients use clinical performance data to make decisions regarding their own care. The data that do exist suggest that public opinion strongly favors the concept of public sharing of performance data, even though few consumers currently direct their care on the basis of objective, publicly reported metrics.
Hospitalists can tangibly improve patient-centered care by:
Implementing a structured approach to incorporating patients and families into the daily plan (eg, the use of “daily plan” templates and bedside rounds).
Fully disclosing adverse events to patients’ families in a timely fashion.
Supporting and implementing hospital initiatives that encourage open medical records, patient-generated health data entry, patient-reported outcomes, and widespread transparency of clinical outcomes data.
PARTNERING AROUND INDIVIDUAL PATIENT NEEDS
Assuming the first ideal has been met and there is complete transparency and flow of information; how much control does the patient have over the plan of care, or the ways in which that plan is carried out? Patients often encounter systems that are unresponsive to their individual needs. Truly patient-centered care requires institutions to have the capability to fully elicit individual patient preferences, and the capacity to reliably customize care in response to those preferences.
APPRECIATION OF INDIVIDUAL NEEDS
At one level, the system can be made more responsive to the patient simply by ensuring that the clinicians have a complete understanding of individual preferences. Unfortunately, despite the central role of interpersonal communication in almost every aspect of care delivery, evidence suggests that clinician-patient communication is often imperfect, and communication skills have only relatively recently been recognized as a core competency by entities such as the Accreditation Council for Graduate Medical Education and The National Board of Medical Examiners. Training can in fact lead to improved communication skills, allowing the clinician to better identify the unique needs and values of the patient, while simultaneously improving patient understanding of his or her clinical situation.
Since needs and preferences may be linked to individual ethnic and religious traditions, patient-centered care requires that providers have an appreciation for this context. Cultural competence refers to the provider’s ability to bridge cultural differences in the provider-patient relationship, through understanding and respect of the patient’s beliefs and awareness of one’s own biases. Cultural competency is most often discussed as a strategy for decreasing the persistent inferior clinical outcomes among minority populations (see Chapter 37: Cultural Competency in Healthcare), but it is equally clear that cultural competency is an essential component of patient-centered care. Like communication, cultural competency is teachable; training programs in cultural competency are on the increase, and in fact are mandated for physicians in many states. In addition, institutions with significant numbers of patients from specific ethnic communities should look for ways to partner with those communities to develop both a shared appreciation of specific needs and preferences as well as appropriate institutional supports.
CAPACITY TO PREPARE FOR AND RESPOND TO INDIVIDUAL NEEDS
Full appreciation of the unique needs of the individual is only meaningful if the system can customize care in response to those needs. The concept of partnering with patients is one way to think about the process of customizing care. Helping patients understand the reasons underlying their care is likely to make them engaged participants rather than passive recipients, and therefore more likely to lead to patient-centered care. For instance, imagine a patient who just had a hip replacement and is asking to leave the hospital as soon as possible. One approach would be to tell her she cannot yet leave, and that the health care team will decide when she is ready to be discharged. A partnering approach would start by asking about her concerns (Patient: “I am worried about getting a hospital-acquired infection”), align with those (Hospitalist: “We do not want you to get an infection or stay in the hospital any longer than is necessary”), help her understand the events that need to occur before it is safe for her to leave the hospital (Hospitalist: “In order for you to be able to function when you leave the hospital, we feel it’s important that you be able to…”), and finish by asking if the team has addressed her concerns (Hospitalist: “How does that sound to you? What questions do you have?”), thereby making her a more active participant in her care.
In some cases, customizing care requires some preparation. For example, encouraging patients to legally designate a surrogate medical decision maker is a critical part of advance care planning; without that information, by the time the patient loses capacity to make their own medical decisions, it may be too late to determine what their preferences are and who they would prefer to speak on their behalf. Other examples include reliably recording who the patient wants involved—and who they do not want involved—in their care, as well as how he or she prefers to be addressed, and which language is best for him or her. Customized patient-centered care then means consistently using that information when speaking with the patient and family, as well as arranging any necessary interpreter services in advance of an encounter. Electronic medical record systems must be designed to support busy clinicians by making it easy to record such information, and then ensuring it is easily retrieved at the point of care.
Being responsive to individual needs also requires ceding some control to the patient. For example, many hospitals are eliminating restrictions on visiting hours in favor of open access for the patient’s family. Family presence during invasive procedures and resuscitation events is endorsed by several professional societies. Programs that allow patients or family members to activate rapid response teams are now well described. Sometimes called “Condition H” or “Code Help,” the concept was initially advanced for the pediatric setting, where serious adverse events have occurred in the presence of a concerned parent who was unable to bring immediate assistance to the bedside. The same principal has now been extended to the adult setting. A typical response team will include both a physician and nurse, and in some models may include critical care specialists, social workers, chaplains, and/or patient representatives. It is not unusual for clinicians to initially express resistance to the concept, citing concerns that patients and family members will overuse “code help” for inappropriate, nonurgent issues. However, the experience of institutions that have implemented response teams is that the option is used prudently, and allows earlier interception of potential adverse events as well as other important issues such as inadequate pain control or communication problems. Successful implementation of a “code help” program requires patient and family education about its purpose, a well-structured activation mechanism, and a predefined set of individual responders. Protocols that define the mechanism for recording the incident, and debriefing with the patient and family, should also be established.
Partnering around individual needs becomes particularly important when treatment options carry significant risks or consequences to the patient. Conditions with multiple potential approaches to management such as chronic back pain, depression, cancer, or organ failure, are all examples of conditions where patient preference plays a major role in determining the best plan of care. Such situations call for informed, shared decision making, a term for the process of communicating with the patient about what matters most to him or her in the context of the medical situation, with the ultimate goal of making patient-centered medical decisions. Shared decision making and partnering with patients replace two inappropriate alternatives: telling patients what to do without their input, and asking them to make choices from a list of options without any guidance or advice. Education about shared decision making may help clinicians and patients navigate this complex process and find the right balance.
The first step is to ensure the patient understands his or her condition, the prognosis, and the treatment options, to the degree they desire. This can be accomplished using established communication techniques such as “Ask-Tell-Ask”: (1) “ask” the patient how much they would like to know, how involved they would like to be in decision making, and what they understand; (2) “tell” them about what they do not yet understand in patient-centered language; (3) “ask” them how they feel about that information, what questions they have and to reiterate their understanding to ensure everyone has a shared understanding.
Before discussing treatment options, it is important for clinicians to understand what matters most to the patient, in the context of the medical situation. Although it is a seemingly vague construct, understanding “what matters most” becomes increasingly important as the stakes of the medical decisions rise. Asking about the patient’s hopes, goals, fears, and worries, and about any tradeoffs they are willing to make in order to reach their goals, brings clarity to what matters most to a patient, and provides invaluable information for the next step in shared decision making.
Discussion of treatment options must include information about the anticipated benefits and risks of each option, and should include a recommendation from the clinician based on knowledge of what matters most to the patient. Without such knowledge, the clinician risks suggesting options that will not actually benefit the patient. For instance, recommending an aggressive chemotherapy regimen may be inappropriate for a patient who prefers to maximize quality of life and minimize time spent in health care settings, even if that means they may die sooner than they would if they received that regimen. Informed shared decision making can be supported by decision aids, that is, structured materials such as a videotape or printed algorithm that help to illustrate treatment options and associated risks and benefits.
Hospitalists can better meet patients individualized needs by taking the following steps:
Acquire and maintain communication skills and cultural competency.
Identify who the patient does and does not want involved in his or her care, including his or her surrogate decision maker.
Communicate in the patient’s native language.
Encourage and empower family presence.
Confirm that the patient-family understand information presented to them, via techniques such as “Ask-Tell-Ask,” and decision aids to illustrate difficult concepts (such as a videotape or printed algorithms).
INVOLVING PATIENTS IN SYSTEM DESIGN
Systems of care delivery have largely evolved in response to the needs of providers and the design of the payment system. The patient thus encounters a care delivery model that is confusing to navigate, inconvenient, and severely fractured between care delivery settings. Improved coordination of care for a patient can help (see the section in this volume about “Transitions of Care”) but more broadly, the concept of patient-centered care extends beyond the approach to the individual patient, and includes as a tenet that patients have a voice in the design of the care delivery system itself. In what might be described as a traditional model for hospital administration, the patient is seen as a consumer of services, without any formal role as part of hospital operations. Consequently, despite the patient’s experiences with the institution, he or she has little or no ability to advocate for change, and the institution lacks the voice of the patient in the design of care processes. This is beginning to change as hospitals move to involve patients in operational activities, either by creating positions for patients or family members on existing hospital committees, and/or creating a separate “Patient/Family Advisory Council” (PFAC) function. Indeed the presence of a PFAC is now mandated by regulation in some states. An institution may have a single PFAC or multiple PFACs based on a desire for specific patient involvement in discreet service lines.
A role for patient/family participation has been described for a myriad of institutional processes, including strategic planning, facility redesign, research oversight, ethics, care coordination, education, finance, credentialing, leadership search, information technology, process improvement, patient safety, service excellence, and personnel practices. Table 16-1 demonstrates the range of involvement possible for patient-family advisors. Whether the plan is to involve patients on existing operational committees and/or to create one or more PFACs, a successful model for patient involvement in the design of care should begin with a vision and a plan that addresses a number of key issues:
What are the goals for including a patient in this design process?
What is the organizational model for patient involvement?
Who from the organization will manage patient involvement?
What criteria will be used for selecting patient participants?
What are the expectations of the patient participants?
What is the selection process?
How long is a term of service, and are there term limits?
What is the orientation process for patients to a hospital administrative role?
What are the expectations for attendance?
What criteria will be used to assess the performance of patient participants, and/or the PFAC committee itself?
An up-front strategy to define these issues is likely to be rewarded with a smooth functioning program for patient involvement in hospital operations.
TABLE 16-1Patient-Family Advisor Involvement at Beth Israel Deaconess Medical Center, Boston, MA ||Download (.pdf) TABLE 16-1 Patient-Family Advisor Involvement at Beth Israel Deaconess Medical Center, Boston, MA
|Committees with Patient-Family Advisors ||Projects with Patient-Family Advisor Involvement |
|Patient Care Assessment Committee of the Board of Directors (quality and safety) ||Communication apology and resolution program improvements |
|Patient Care Committee of the Board of Directors ||Patient rights and responsibilities update |
|Medication Safety Subcommittee ||OpenNotes project |
|Drug Shortage Task Force ||PatientSite (patient portal) design |
|Critical Care Executive Committee ||Health care proxy material redesign |
|Critical Care Experience Task Force ||Improving the discharge experience through better educational materials |
|Conversation Ready Initiative (End-of-Life Planning) ||Communication before, during and after surgery |
|Moore Foundation Grant Committee ||Nurse competency training curriculum |
|Respect and Dignity Workgroup ||MOLST (Medical Orders for Life-Sustaining Treatment) educational material development |
|OpenNotes Workgroups ||Hospital room design |
|Service Excellence Steering committee ||Diversity planning group |
FRONTIERS IN PATIENT-CENTERED CARE
How will we know if we are becoming more patient-centered? Developing measures of patient-centered care is an important step. One approach is to assess whether a hospital has the elements of patient-centered systems described in this chapter. A self-assessment tool created through a partnership of the Institute for Patient-Centered and Family-Centered Care and the American Hospital Association is available for this purpose (http://www.aha.org/aha/content/2005/pdf/assessment.pdf). But having the capability to be patient-centered is not sufficient; a system must also reliably deliver patient-centered care for each patient.
What does it mean to be patient-centered on an individual level? Certainly one can imagine situations where it is clear whether or not the care was patient-centered: for example, failure to use an interpreter when it was requested by the patient would demonstrate a failure to be patient-centered, whereas eliciting and honoring end-of-life care preferences would be a great example of patient-centered care. But in many situations, it may not be clear how to assess whether or not care has been patient-centered. Imagine a patient is admitted to the hospital for a viral illness. Despite its etiology, the patient requests an antibiotic for his illness, saying he believes it will help him improve. But instead of prescribing the antibiotic, the doctor listens to the patient’s concerns, tries to ensure he feels heard, respectfully counsels him about the risks of antibiotics, prescribes other medications for the patient’s symptoms, and reassures him that his symptoms will improve soon. In this situation, who is the judge of whether the care was “patient-centered”? Although most readers would agree that the doctor provided excellent medical care, the patient may feel that his care was not “patient-centered” because his request was not honored.
Measures of patient-centered care should be defined based on both what matters most to patients and what is consistent with acceptable medical practice. As a starting point, future work could begin to define and measure specific elements of patient-centered care, and through collaboration with patients and providers could identify elements around which there is strong consensus. Applying these measures to populations could reveal the degree to which a system delivers patient-centered care. Such information could reveal the opportunities for improvement and drive innovation by patients, providers, and institutional leaders.
Much work remains to fully define best practice in patient-centered care, and the known steps to achieving optimally patient-centered care are numerous and complex. Yet in spite of these challenges, as providers, it is our responsibility to prioritize patient-centered care. As a historical figure once said: “It is not incumbent upon you to complete the work, but neither are you at liberty to desist from it.” [Avot 2:21, attributed to Rabbi Tarfon.]
Thank you to the following Beth Israel Deaconess Medical Center Patient/Family Advisors for their insightful and formative comments on this chapter: Terri Payne Butler, Peter Tarsa, and Nicola Truppin.
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