Speak Up! Addressing the Paradox Plaguing Patient Centered Care
Beneath the patient centered rhetoric that dominates health care lurks a major paradox: The language of patient centered care is omnipresent, but the reality is falling short. Patients are bombarded with surveys, post discharge calls, opportunities to share compliments and concerns, and requests to speak up. In actuality, patients' perceptions of care are often ignored and rarely translate into improvements. Two flaws underlie this paradox. First, current approaches place the burden on patients to voice their concerns. However, patients tend not to speak up, even when they believe that something has gone seriously wrong (13) Patients, and often family members, fear that mentioning a problem will result in retaliation or poor care. Many patients are too ill to seek reporting channels. Others are not convinced that reporting will matter. Instead of placing the responsibility on patients, health care systems and providers must create an environment in which patients and family members feel safe raising concerns and are confident that their feedback will be welcome and enhance their care. Second, most health care institutions cannot respond in real time if patients do express a concern, reinforcing their belief that speaking up is not worth the effort and risk. Expressions of concern from the patient should trigger immediate action by the health care team, similar to their response to adverse drug events or surgical site infections (4) The health care response should include steps to remediate the breakdown and a thoughtful, forward looking plan to prevent recurrences. At present, neither reliably occurs. A health care institution's ability to address patients' concerns is a litmus test of patient centeredness, which most organizations fail. Don Berwick's remark that every system is designed to get precisely the results it achieves (5) is particularly true for institutional mechanisms to address patient concerns about care breakdowns. Health care administrators may point to existing complaint systems that are accessed by a handful of activated patients or their families without realizing that these complaints are the tip of the iceberg. Leaders may also track scores from the Hospital Consumer Assessment of Healthcare Providers and Systems, ignoring the insensitivity of these measures to individual episodes of care breakdowns and learning about patient problems when it is too late to intervene. Concerted efforts are needed to change the status quo. Health care systems must make it safe and easy for patients and family members to raise concerns. Institutions seeking to convince patients that they truly do want to know about concerns should develop a multimodal video and print campaign expressing this message, which is deployed in reception areas and patient rooms and reinforced by all providers. This campaign should include easy ways for patients to speak up via several well publicized and accessible reporting channels. In addition to encouraging patient initiated reporting, health care institutions should proactively ask patients about their experiences. Proactive outreach will make it easy for patients to report concerns while enabling real time responses. The patient safety movement has benefited by shifting from reactive to proactive approaches in which identifying the near miss is highly valued. Similarly, responding to patient concerns in real time provides the opportunity to remediate problems as they occur, thereby mitigating harms. Questions about patients' experiences of care breakdowns could be incorporated into existing processes, such as nurse manager rounds, or assigned to a patient advocate or someone outside the core care team. Patients' families should be included in outreach conversations because they may be better able to identify care breakdowns or articulate concerns. Finally, systems must be established that enable health care institutions and providers to address patients' concerns in real time and to learn how to prevent recurrences. Frontline clinicians will play an essential role in these efforts; they should be equipped with timely patient feedback and the communication skills necessary for responding to a range of patient concerns. Because patient reported breakdowns are heterogeneous events, health care institutions should also develop various strategies to ensure effective responses to concerns. For instance, the rapid response team model could be adapted to address patient perceived breakdowns. Alternatively, institutions could designate a person with responsibility for monitoring patient reports and triggering real time responses. This person would also close the loop with patients and families, informing them which steps were taken to address their concern and following up to determine whether the issue was satisfactorily resolved. To facilitate system level learning, formal analytic approaches, such as failure modes and effects analyses, could be used to identify high priority patient perceived breakdowns and address system defects that might lead to recurrences. Not everyone will be enthusiastic about soliciting information on patients' care experiences (6) Clinicians and leaders may be reluctant to explicitly ask patients and family members about things that went wrong, worrying that the system would be overwhelmed with unfounded complaints. However, proactively eliciting patients' concerns could yield many benefits. Some of the breakdowns patients identify represent medical errors that should be addressed (7) In other instances, patients' concerns represent unavoidable complications of care or harmful communication breakdowns. Such reports are also valuable because they create opportunities to correct harmful misperceptions that an error has occurred or to address patients' uncertainty, confusion, and distrust. In addition, identifying and addressing patients' concerns could generate traction around improving patient experience scores and, in the process, realize the potential downstream benefits of reducing patient complaints and malpractice actions. Individual providers may also find that asking patients about their concerns improves trust, facilitates communication, and enhances their own satisfaction through a strengthened patientprovider relationship. Providing truly patient centered care is not about getting patients to speak up, but rather about health care institutions and providers stepping up and creating an environment in which patients suffering in silence after care breakdowns become the exception, not the norm. To achieve this goal, health care systems and providers must communicate a sincere desire to learn about patients' experiences, especially when things go wrong, and commit to making things right when patients speak up. We can learn a lot from patients and family members if we are prepared to askand listen.
Annals of Internal Medicine