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Is Anybody Listening? The Kidney Patient's Role in Doctor/Patient Communication
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By Margaret S. Washington, MSW, MSPH Introduction The question is, “Doctor, can you hear me?” The answer is, “Patient, are you listening?” This question and this answer are repeated hundreds of times a day as physicians and patients interact. The real question is: “Is anybody listening?” The real answer is: “Very few people are listening.” “A Mounting Crisis” There is a mounting crisis in communication between doctors and patients—one that often impacts both in a negative way. Each is intent on making his/her point to the extent that they function as ships passing in the night. The nature of the dialysis experience, usually performed three times a week, makes this communication crisis urgent and in need of a close look, assessment, and strategies to address the problem. Dialysis patients arrive at their facilities with their own particular problems and are confronted by the “unit problems,” which often impact on the treatment environment and the quality of care they receive. Dialysis patients must empower themselves to become active partners in their treatment and demand to be treated with dignity and respect. “Poor Communication” Doctor, Can You Hear Me? Patient, Are You Listening? is the product of more than three decades of first-hand observation in a variety of healthcare settings. In a neighborhood health center, in two major metropolitan teaching hospitals, and as the former Executive Director of an End-Stage Renal Disease (ESRD) Network of 160 dialysis facilities and 10 renal transplant centers, I saw the same kinds of poor communication, including: Inattentiveness: Misunderstanding; Poor description of symptoms; Equally poor explanation of diagnoses, rudeness; and Cultural differences that became barriers to understanding.
Finally, as a consultant on effective communication in healthcare, I am confronted regularly by patients and physicians who are looking for better ways to understand each other. [Editor’s italics.] “Experienced Observers” The three years of research for the book involved mailed surveys, on-site surveys, focus groups, and one-on-one interviews. The respondent pool comprised more than 3,000 physicians and patients across the country. In all, 1,429 patients (572 of whom were renal patients) responded to the surveys, and 375 patients (151 of whom suffered from kidney failure) participated in the 35 patient focus groups. All were experienced observers of the healthcare scene. Urban patients were more critical of healthcare providers in a number of areas, such as availability, office hours, costs, and frequency of prescription changes. Overall, rural patients were less likely to complain, and, in the focus groups, more reticent in their responses. Similar differences emerged in comparing the racial groups: Caucasians were generally accepting of the care they received and reluctant to criticize their physicians while African Americans were more outspoken and often critical of the care, which, they perceived, was influenced by their race and ability to pay. The sampling of Hispanic and Asian patients was small, but they appeared most satisfied with their current healthcare delivery. Hearing and Listening The doctor says: “We’re going to try a new medication for your blood pressure.” (Hands a prescription to the patient. ) “Get this filled today.” The patient hears: “Another $60 at the pharmacy before my next check comes in.” The patient says: “Let’s wait a few weeks to start the new medicine.” The doctor hears: “She’s questioning my judgment. Why can’t patients follow directions?” A “Humpty Dumpty” Meaning Too often, the exchanges between doctors and patients are like Alice’s encounter with Humpty Dumpty in Lewis Carroll’s Through the Looking Glass. When Humpty Dumpty used the word “glory” out of context, Alice told him: “I don’t know what you mean by ‘glory.'" Humpty Dumpty smiled contemptuously. "Of course you don't--till I tell you...When I use a word, it means just what I choose it to mean--neither more nor less." Doctor-patient communication is often problematic. By definition and connotation, words may have very different meanings to the doctor and to the patient. In addition to the complex language of medicine that can create a gulf in understanding, social and cultural factors can distance the physician from patients who live in a world he/she may never have visited. In the case of foreign-born physicians (or patients, for that matter), an accent or a limited understanding of idiomatic expressions may cause misunderstandings. Even more critical, perhaps, is the patient’s failure to understand the seriousness of his/her condition and the need to comply with instructions and the physician’s failure to understand the barriers—psychological, financial, or cultural—that may cause patient noncompliance. "Good Communication" Good communication is particularyly important in the treatment of chronic illnesses such as hypertension, diabetes, and ESRD. Over the many years of interaction with physicians and their care teams, which include nurses, social workers, dietitians, and other healthcare professionals, patients ideally develop a partnership with their physicians and care providers. Essential to this partnership is the commitment of both patient and physician to accomplish the best possible outcome. Patients must “own” their illness and the responsibility to follow medical direction, even when it means making significant lifestyle changes. Physicians must be willing to share with the patient the development of a treatment plan that recognizes patient participation. Both partners must pay particular heed to the art of “hearing and listening.” Creating a Viable Action Plan The problem of ineffective communication is solvable: there is an urgent need to execute a viable action plan to assure the best possible patient outcome. We are able to improve issues of poor communication if both parties—physicians and patients—commit to owning responsibility for their roles in a successful relationship. Both must critique their own behaviors and identify areas that need improvement. Patients as a whole, and particularly those with long-term chronic illnesses, must develop the capacity to be attentive to their illness on a regular basis. To do so, they must develop an ongoing relationship with their doctors based on trust and mutual respect. Making a Commitment Patients must make a commitment to learn about their illness and exhibit a willingness to partner with their physicians by sharing information that will assist the doctor in making an accurate diagnosis and treatment plan. Patients must assume responsibility for knowing their medications and the purpose of each, and they must strive to comply with the treatment plan. When patients are not able to follow the plan, they must inform the physician and seek help in overcoming the barriers to care that result in non-compliance. Patients should learn how to describe their symptoms in a precise, meaningful way (“I’m short of breath after climbing a few stairs” may be the first step toward a diagnosis. “I’m feeling poorly” provides little guidance to the doctor.) “Major Changes” Patients should take note of any major changes in prescribed medications and any side effects they may be experiencing. They should feel free to question any changes in treatment or medication. Patients should inform each physician they see about any chronic conditions they have, current medications they are taking, and adverse reactions they have experienced with specific drugs. Also, patients should not be reluctant to say, “I don’t understand.” This statement is not a reflection of ignorance but rather an indication that you are willing to partner in your care and want to be armed with information that you understand. Patient Rights and Risks Patients must be aware of their rights, including the right to information in their medical records. Certain healthcare providers have specific rules governing medical record disclosures, and patients should be made aware of these rules. Additionally, patients have the right to know the risks involved in any prescribed test or treatment and to understand the potential consequences of undergoing, or not undergoing, the treatment. They are usually wise to follow their doctor’s recommendations. Occasionally, however, physician-patient concerns, priorities, or beliefs come into conflict, and, in such cases, communication is especially important. Patients who are thinking about refusing treatment should discuss their concerns openly with the physician. There may be a compromise course of action that will satisfy both. Patients should treat their doctors and staff in the same manner that they wish to be treated. Courtesy is contagious. When you believe that you have been treated with discourtesy by a physician or his/her staff, make your concerns known to the physician. Conclusion The ingredients of disrespect, mistrust, lack of cultural competency (failure to understand and accommodate racial, ethnic, and cultural differences), insensitivity, and poor communication of concerns combine to create a “conflict pie.” Acknowledging the existence of the “pie” is the first step towards eliminating the conflict. Each partner (patient and doctor) must be willing to own responsibility for some slices in the pie (i.e., lack of availability, withholding information, mistrust, etc.) Once the ownership of the conflict slice is acknowledged, the owner must recognize how it contributes to the problem of communication and look for ways to eliminate it or modify its impact. The ingredients serve as barriers to listening and hearing of patient and doctor concerns and frustrations. Mutual respect, open communication, and a willingness to accept responsibility for change will create a meaningful partnership for health—a partnership where each partner has an accepted, specific role to play and responsibility for making it work. Patients who become full partners in their medical care will be the ultimate winners. About the Author Margaret S. Washington, MSW, MSPH, author of Doctor,Can You Hear Me? Patient, Are You Listening?, is President of Washington Associates, a Pittsburgh, PA-based consulting firm that provides training in communications to physicians, other healthcare providers, and patient groups across the country. An experienced healthcare administrator, she served for 23 years as Executive Director of the ESRD Network operating out of the University of Pittsburgh Medical Center. She is a Board member of the American Kidney Fund, co-author of articles in professional medical journals, and recipient of awards from the National Kidney Foundation of Western Pennsylvania, the Allegheny County Medical Society, and the American Medical Writers Association. For more information on Doctor, Can You Hear Me? Patient, Are You Listening?, visit www.doctorpatienttalk.com/. This article was originally posted on iKidney.com, supported by Watson Pharma, Inc. Last Updated October 2007
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