The Frustrations of Sick Americans

The Frustrations of Sick Americans By Susan B. Frampton June 13, 2012 Patient-centered approaches to medical care can lead to better outcomes. In May, National Public Radio, the Robert Wood Johnson Foundation and the Harvard School of Public Health released the findings of a poll that asked Americans how they view the quality of health care and its cost. The findings inspired a weeklong series on NPR called "Sick in America." The poll randomly surveyed 1,508 adults across the nation. A little more than a quarter of them required "a lot of medical care," or overnight hospitalization within the past 12 months. The report illuminates how our current health care system is letting down those it is intended to help, specifically people who have a serious medical condition or who've spent time in the hospital. Three of four people who were sick said cost is a very serious problem, and half said quality is a very serious problem. It is not breaking news that there are shortcomings in our health care system, but this survey provides valuable insights into precisely what is and isn't working for sick Americans. There is also encouraging progress to report. Many health care providers around the country have adopted patient-centered approaches to care that are addressing many of the problems highlighted in the poll. Poor Communication Among people who have required a lot of care recently, significant proportions say their treatment was poorly managed, with nearly a third complaining of poor communication among their caregivers. Survey respondents' emphasis on communication (or lack thereof) as a determinant of their perceptions of health care quality was not a surprise to me or to my colleagues at Planetree. The Planetree model of care originates with the voices of patients, families and caregivers. Time and again, in focus groups held by Planetree across the globe, patients express the added confidence they feel when clinicians actively include them as part of the care team — and conversely, how dehumanizing it is to be spoken about instead of spoken to. They also consistently bemoan the fragmentation of the health care system and express a desire for an open exchange of information that will equip them, as well as their loved ones who may assist with their care, with the knowledge they need to take an active role in managing their own health and wellness. In hospitals committed to patient-centered care delivery, open exchanges of information are prioritized. Patients are encouraged to review their health record with their doctors and nurses and to contribute progress notes. Patients are given literature, tools and resources to understand their diagnosis and treatment options. Daily goals are discussed with the patient and captured in laymen's terms on a communication board in the room. Loved ones are invited to be official care partners, and visiting hours are eliminated to encourage loved ones' presence and participation. Practices like these that foster engagement and nurture a trusting relationship between caregivers and patients also yield improved clinical and organizational outcomes. When caregivers partner with patients and their loved ones, medication errors can be avoided, and patients better understand their condition so they can manage their care successfully at home and avoid a readmission. Insufficient Information A quarter of sick Americans report that all the needed information about their treatment or prescriptions was not provided. According to the Institute of Medicine, "Stable, trusting relationships between a patient and the people providing care can be critical to healing or managing an illness." Time is central to such relationships. During a shift change, for example, a nurse learns about each patient's needs and has an opportunity to clarify details of the care plan. Including patients in this conversation empowers them and reinforces the crucial role they play in meeting their own health and wellness goals. The nurse's role as educator is a central focus of the profession. This isn't necessarily an easy proposition. Some patients are simply too sick to learn or are in denial about their conditions; others are depressed or anxious. Patient-centered hospitals implement a range of educational techniques to ensure that patients get the information they need in a way they will comprehend it. Educational materials written in plain language, DVDs, websites and the teach-back method can be combined to meet patients' needs. As families continue to shoulder more of the responsibility for caring for loved ones, it is essential that accommodations be made to include them in patient education activities. Poor Care Coordination Nearly a quarter of patients had to see multiple medical professionals, and no one doctor understood or kept track of all the different aspects of their medical issues and treatments. Focus group data collected by Planetree underscores the challenges patients encounter when they try to coordinate care from one episode to the next and in different care settings. When systems don't "speak" with one another, patients become the primary point of continuity, but many report feeling ill-equipped to navigate through such unfamiliar and high-stakes territory. Personal health records help patients coordinate their care. As an ongoing record of the patient's health history, medical conditions, test results, treatment plans, medication lists and wellness goals, PHRs can demystify the health care experience. Because the owner of the PHR is the patient, it transcends provider silos, equipping patients with a practical tool for assuring all their caregivers understand the patient's care needs and priorities for their health. This information can be maintained electronically with password protection, while other PHRs are paper-based. Whatever the format, the function is the same: communicating consistently with providers when transitioning from one care setting to another.In a small-scale study recently completed by Planetree, using a PHR was found to provide an avenue for patients to raise concerns and for clinicians to address topics that would have been overlooked. Silo Thinking Three in 10 sick Americans say that a doctor, nurse or other health professional did not spend enough time with them. Additionally, a majority of sick Americans want their encounters with their physicians to involve discussions about broader health issues, rather than a specific medical problem. The role of hospital leaders and front-line staff is changing, and it requires caregivers to think beyond discharge — to be collaborators across the health care continuum, from home care to long-term care provider teams. Additionally, patient-centered organizations recognize the interconnectivity of health and the importance of respecting a patient's cultural, spiritual, intellectual, biological and socioeconomic individuality. To encourage sharing of information, one approach taken by Dorothea Wild, M.D., of Griffin Hospital, a Planetree-designated hospital in Derby, Conn., is to ask a simple question, "What else?" three times. Listening and asking "What else?" draws out additional — often significant — information from patients about chronic conditions, emotional or economic issues and even substance abuse. Letting Patients Lead To move from a health care system that primarily treats the sick in America to one that actively promotes wellness in America, we must follow the lead of the poll by National Public Radio, the Robert Wood Johnson Foundation and the Harvard School of Public Health and first listen to patients. What do they need from health care providers and the health care system to help them successfully understand their treatment, manage their care and meet their personal wellness goals? They will be our guides in designing a health care system that supports meaningful patient partnerships and true patient-centered care. Susan Frampton, Ph.D., is the president of Planetree in Derby, Conn. The opinions expressed by authors do not necessarily reflect the policy of Health Forum Inc. or the American Hospital Association.