“How do we keep the patient at the center of the education and care delivery continuum, especially in times of rapid change?” asked Miguel Paniagua, medical advisor for the National Board of Medical Examiners. June Eilers, a researcher and educator at the University of Nebraska Medical Center College of Nursing, was in a position to respond to Paniagua’s question from multiple perspectives. In addition to being a nurse and a scholar, Eilers herself had been a patient and a caretaker for an ill loved one. She described the many competing voices in health care, including those of accreditors, educators, providers, payers, regulators, students, employers, and patients. It can be difficult to genuinely hear people, she said, and the loudest voices often get the most attention. The patient voice, in particular, can be difficult to reconcile with the other voices in the system. Patients vary in their preferences and their levels of knowledge and motivation. Often dealing with the trauma of a health condition, they may not have chosen when or where to receive care. In addition, said Eilers, patients are not always patient and their view of the situation can be very different from others. Eilers noted that a patient’s voice is not just conveying the perspective of the individual patient but also his or her family. Despite these challenges, she said, it is critical that patients’ voices be at the center of health care. Patients are the only source of information about certain conditions, she added. For example, only a patient can assess his or her level of pain or nausea; providers must listen carefully to patients in order to properly evaluate their conditions and co-formulate plans for recovery.
Diversity is often discussed in health care education and training, said Eilers, and providers seek to recruit students who are diverse in culture, age, and gender. However, they should also pay attention to preparing students for the diversity of the patient population. Some patients are very knowledgeable about health and care delivery systems, while others have little experience with them. Some patients are comfortable speaking up and having open discussions with their providers, she said, while others keep quiet and “would never argue with a provider.” Some patients are technologically savvy and able to easily navigate patient portals and electronic records. Others lack Internet service, Internet-capable devices, or the knowledge of how to access such information. These variations in patients’ circumstances can be multiplied when the patient’s entire family is involved, because each person brings his or her own knowledge, experience, and expectations to the table.
PREPARING STUDENTS AND HEALTH CARE WORKERS
Eilers posed a question to the workshop participants for discussion: How do we prepare students and health care workers for dealing with the “disruption” of patient and family voices and perspectives? Eilers noted
that she was using the word “disruption” in part to trigger reactions; while most agree that patients should be the center of health care, she said, they are sometimes viewed as “disrupting our smooth flow.” Participants discussed the issue with their tablemates before reporting back to the group with their thoughts on Eilers’s question.
Kathy McGuinn with the American Association of Colleges of Nursing started the report-back by describing an example of a “disruptive” patient as a person who comes into the emergency room at 3:00 a.m. with a headache. The patient may be dismissed as a mere disruption, yet, if the emergency room staff actually engaged with the patient and listened, they might learn relevant information (e.g., a family member recently died of meningitis). Joanna Cain, representing the American College of Obstetricians and Gynecologists, reported that individuals in her group discussed how family members can disrupt their loved one’s care plan. For example, a dying patient’s adult child shows up and wants to try new interventions when the patient himself is ready for hospice; or, an elderly patient’s idea of independence at home might vary from what her children think is appropriate. Eilers brought up another potentially disruptive scenario in which a family has done extensive research on the patient’s condition and has predetermined ideas about which treatments are appropriate. Providers need to have the tools and knowledge to manage these situations and to facilitate communication within the family while also keeping the patient’s wishes front and center. Cain noted that one way to introduce these skills to both incoming and current providers might be through simulations. Paniagua added that the United States Medical Licensing Examination includes a clinical skills portion, yet none of the scenarios involve more than one person advocating or arguing for the patient perspective. The competency of dealing with and communicating with multiple family members is not typically tested, he said, even though it is a much needed and relevant skill for managing real-world situations.
This conversation compelled Susan Scrimshaw, an anthropologist by training and the recent past president of The Sage Colleges, to consider the importance of providers acknowledging and understanding the culture of the patient and the family. First, she said, providers need to find ways to balance patient requests and best practices. The example she offered involved individuals’ cultural practices or traditions. Deeply engrained beliefs can lead a person (or patient) to seek a specific course of action, despite scientific evidence suggesting that a different path may be more appropriate. In these scenarios, providers need the ability to genuinely listen to patients’ perspectives, understand them, and then guide patients through the decision-making process. The second way in which culture is relevant, she said, is that patients and families may be reluctant to talk to a provider who “doesn’t look like them or … respect their ideas.” Paniagua
agreed and added that, when providers and patients come from different cultures, it can affect their perceptions of each other and, ultimately, the care a patient receives.
Mary Dickow with the Organization for Associate Degree Nursing described her table’s conversation as approaching disruption in a different way. Rather than thinking of the patient as the disrupter of productivity, Dickow reported framing productivity as the disrupter of relationships between providers and patients and their families. These relationships depend not only on how health professionals listen but also on what patients decide to share with certain staff. Dickow then told an anecdote about a patient who openly discussed his health issues and concerns with the nurse at the beginning of an appointment. When the doctor walked in and asked how the patient was doing, however, the man replied, “I’m doing great.” This patient had found a sympathetic ear in the nurse and had already shared the relevant information. As a result, the doctor missed out on an opportunity to build the relationship with the patient.
Anthony Breitbach, representing the Association of Schools of Allied Health Professions, shared a story about a university-based program wherein health professionals in St. Louis work with school-based health care centers in providing schools with a nurse practitioner and behavioral health services, along with other health-related services. After 5 years, said Breitbach, the program lost funding. This led the school community, health care providers, and university representatives to come together to examine their options for keeping the program going. There were discussions about how services like immunizations and physicals might continue; however, explained Breitbach, these discussions took a turn when one of the principals “looked us in the eye” and said that the most important service, by far, was behavioral health. These schools and their students, said Breitbach, had become accustomed to having walk-in behavioral health care services available. As a result, those institutions had totally restructured their discipline policies. That principal’s comment was characterized as “really eye-opening” and shifted the urgency of the conversation toward ensuring continuity of mental and behavioral health services crucial to the school community and away from what the health providers once thought was most urgent.
ENABLERS OF DISRUPTION
A number of participants raised concerns about technology as an enabler of disruption. Adrienne White-Faines from the American Osteopathic Association described her conversation about what to do with patients and families who rely on unapproved devices for monitoring patients’ vital signs. This example was further explored by Eliers who brought up another challenge stemming from patients’ use of the Internet to uncover “cures”
that may or may not be proven or even approved treatments. Paniagua was surprised that none of the conversations were about electronic health records (EHRs). The role of EHRs, he said, “can be disruptive or it could be positive.” Launette Woolforde, representing the National League for Nursing, described technology, and the EHR in particular, as an added challenge to the ongoing trend toward care specialization. Moving away from a consolidated, primary care approach to one that is highly specialized has “created a disjointed health care system,” her group observed. Eliers tied the two concepts together, saying “if one of your providers isn’t part of the current system, their part of the record isn’t in there.”
There needs to be an alignment of goals, Gerri Lamb from the Arizona State University’s Center for Advancing Interprofessional Practice, Education and Research remarked. Specifically, Lamb talked about the issue of aligning goals between people (i.e., patient, family, and provider) and incentives in the system like performance metrics. The metrics might include outcomes such as no-show or readmission rates, which are part of value-based purchasing and considered system disrupters. What they often do not consider are challenges due to a lack of transportation and other social determinants that cause patients to miss visits. In addition, said Lamb, performance metrics are pushing providers to assess their priorities given they may have only 7 minutes for a patient visit regardless of the complexity of the person’s health condition. This, along with a shift in the culture, could lead to feelings of mistrust as pointed out by Pamela Jeffries, dean of nursing at The George Washington University. Speaking as a patient, Eliers described really struggling with how well prepared patients feel they need to be when visiting their providers. This is especially pronounced for patients with multiple health problems who feel they have to choose from among their various health-related issues as to what they want to discuss during the visit. There is no way that all of the issues can be considered in the time allotted, especially if the provider “takes the time to ask me what I think, because,” said Eliers, “I usually have an opinion.”
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