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Author Information and Disclosure
Dorothy E. Stubbe, M.D., Associate Professor and Program Director, Yale University School of Medicine; Child Study Center, New Haven, CT.
Dr. Stubbe reports no competing interests.
Address correspondence to Dorothy Stubbe, M.D., Associate Professor and Program Director, Yale University School of Medicine Child Study Center, New Haven, CT. email@example.com
It is as important to know the patient who has the disease, as it is to know the disease which the patient has.
Death of the Personal Doctor (1)
Patient-centered care engages the patient in the decision-making process concerning his/her medical care, with a resultant improvement in patient adherence. Effective doctor-patient communication optimizes patient-centered care (2). However, there is another important paradigm in current medical practice—evidence-based medicine. Bensing (3) characterized the philosophical underpinnings of evidence-based medicine and that of patient-centered medicine as frequently inhabiting “separate worlds:”
… careful analysis shows that they focus on different aspects of medical care and have, in fact, little in common. Evidence-based medicine is a rather young concept that entered the scientific literature in the early 1990s. It has basically a positivistic, biomedical perspective. Its focus is on offering clinicians the best available evidence about the most adequate treatment for their patients, considering medicine merely as a cognitive-rational enterprise. In this approach, the uniqueness of patients, their individual needs and preferences, and their emotional status are easily neglected as relevant factors in decision-making. Patient-centered medicine, although not a new phenomenon, has recently attracted renewed attention. It has basically a humanistic, biopsychosocial perspective, combining ethical values on “the ideal physician,” with psychotherapeutic theories on facilitating patients’ disclosure of real worries, and negotiation theories on decision making. It puts a strong focus on patient participation in clinical decision making by taking into account the patients’ perspective, and tuning medical care to the patients’ needs and preferences. However, in this approach the ideological base is better developed than its evidence base. In modern medicine both paradigms are highly relevant, but yet seem to belong to different worlds (3, p. 19).
Mr. Martely stood, somewhat hunched as if attempting to remain inconspicuous despite his notable height. He had not been to a psychiatrist before, and he was clearly uncomfortable.
“Hello, Mr. Martely,” Dr. Freeman smiled, shaking his hand as he entered the office. Mr. Martely cautiously inspected the office prior to sitting down. Dr. Freeman, noting Mr. Martely’s discomfort, began discussing the components of the evaluation—they would talk about what brought him to the psychiatrist, review his history, and determine how she might be most helpful. Mr. Martely’s stiff shoulders relaxed slightly as Dr. Freeman spoke.
“So,” finished Dr. Freeman. “What brings you to see me today?”
Mr. Martely stared out the window, saying nothing. Dr. Freeman respectfully waited. After a long silence, Mr. Martely blurted out what was on his mind. “You are probably going to think I’m crazy, so I don’t want to say. But, in Haiti, where I grew up, we believe in Vodou. I know that Jean-Paul has put a curse on me. I went to see Alourdes. She is a Vodou healer, you know. She is really good. She understands these things, and she agreed. She gave me a good luck bath, and a powerful charm, and I was doing good. But, then it came back.”
“What came back?” inquired Dr. Freeman, leaning forward attentively in her chair.
“The bad luck. You see, I lost another job. They say it’s my temper. But it’s not part of me. It just comes. That’s why I know Jean-Paul put a curse on me.”
After hearing more of his life story, Dr. Freeman sat, contemplating options. She did not know much about Haitian Vodou beliefs. Mr. Martely’s life was replete with traumatic losses, followed by emotional distress and angry outbursts. Jean-Paul, the person from his childhood whom he identified as the nemesis that had placed the curse, had been a friend in high school. They had both fallen in love with the same girl. Mr. Martely had told the girl some of Jean-Paul’s history and how he “wasn’t a trustworthy guy.” The claims were basically true, but Jean-Paul was enraged, and called Mr. Martely a lying traitor. It is then that Mr. Martely felt that Jean-Paul had put a curse on him. He had lost the girl to Jean-Paul and suffered “bad luck” ever since. He had lost multiple jobs, was at risk of being evicted from his apartment, and had intermittent suicidal thoughts.
“I don’t really believe in psychiatrists,” Mr. Martely confessed. “I’m afraid you will think I’m crazy and put me away or drug me up. But I lost another job because of my temper, and I don’t know what else to do. Please, just tell me what to do or give me something powerful to help!”
Dr. Freeman gazed empathically at Mr. Martely. She was touched by his honesty, his pain, and his convictions. How should she respond? His cultural expectation was for a “cure”—some treatment that would break this bad luck curse. The evidence suggested a major depressive disorder, possibly with psychotic features. There was a component of chronic PTSD and impulse control difficulties, as well. He smoked marijuana when he could afford it—that also needed to be considered. Evidence-based treatment would point to antidepressants, possibly an antipsychotic medication, and cognitive-behavioral therapy. Patient-centered treatment would suggest engagement of Mr. Martely in formulating his own treatment plan. Did that fit with his cultural beliefs? Systems-based care models would suggest that Mr. Martely needed assistance with housing, finances, and perhaps job coaching. As all of these thoughts swirled through Dr. Freeman’s head, she took a piece of paper.
“Hmm… You have had bad luck,” she mused. “And you do have problems that need to be sorted out. The first one is safety and we can list the others that you think are most urgent.”
Dr. Freeman and Mr. Martely set out a short-term plan. As he was leaving, Mr. Martely shook Dr. Freeman’s hand. “You should think about becoming a Vodou healer. I think you might have the ‘gift of eyes,’” he said, flashing a smile as he departed.
The gold standard of evidence for treatment effectiveness is the randomized controlled trial (RCT) (4). Yet, treatments that are found “the most adequate” in RTCs are usually only tested on a small sample of patients utilizing very strict exclusion criteria. As Black (5) discussed, RCTs are performed on diseases, while results have to be applied to patients that in many cases would not have fulfilled the inclusion criteria for participation in the study. Sweeney (6) characterized evidence-based medicine as essentially a “doctor-centered approach,” as the focus is on the doctor’s interpretation of the evidence, with little mention of the importance of human relationships and the role of the doctor-patient relationship in treatment decisions, adherence, and outcomes. Sweeney advocated for a third dimension in clinical decision making; in addition to statistical significance that stems from RCTs, and the clinical significance that stems from the doctor’s intuition and experience, there is the personal significance that stems from the individual patient as the third important source of information.
Ebell and colleagues (7) have attempted to bridge the divide between evidence-based treatment (EBT) and a patient-centered approach to grading evidence in the medical literature: the Strength of Recommendation Taxonomy (SORT). This taxonomy is built around the information mastery framework. Patient-centered outcomes are measured to determine the applicability of the research to individual patients. The authors suggest that the SORT taxonomy is “straightforward and comprehensive, is easily applied by physicians, and explicitly addresses the issue of patient-oriented versus disease-oriented evidence” (p. 66). In this manner, Ebell and his colleagues have sought to bridge the two models of patient care decision making.
Bensing proposed that it is the doctor-patient communication—the reciprocal sharing of knowledge, preferences, and priorities that leads to a negotiated treatment plan—that is the key to bridging the gap between evidence-based and patient-centered models of care (3). “The best way to know the patients’ agenda is still, and will perhaps always be, listening to the patients’ story and seeking the right balance in the decision making process” (p. 23). Bensing referred to communication as “the royal pathway to patient-centered medicine” (8), and recommended more vigorous research into the methods of enhancing physician’s communication and engagement skills. In this manner, physicians may use the best sources that science has to offer to their patients, but never in a way that neglects important psychosocial issues or the uniqueness of each patient as a person (9).
The more informed a patient is, the better able he/she is to collaborate effectively in decision making about medical care. Even a well-informed patient, however, lacks the education and expertise that emanate from prolonged medical education and the wisdom generated from the practice experience of the physician. It is therefore incumbent upon the physician to distill a very large amount of information, including the results of randomized controlled trials, practice algorithms, and clinical experience, and then “translate” this information into lay language to assist the patient in understanding the personal impact of the medical choices to be made (10). Additionally, the patient’s wants, needs, preferences, and fears often need to be “translated” from discussions, body language, and questions to help the physician understand the patient’s priorities around care options. The following communication tools may assist the patient in understanding the evidence and collaborating in treatment decisions:
Begin by explaining the process of evaluation and specifying the components of doctor-patient collaboration in treatment decisions;
Listen to the patient’s life narrative as it relates to the presenting problems. This will give clues to hopes, fears, and priorities in terms of care decisions;
Educate the patient about his/her diagnosis in lay terms;
Differentiate between the patient as a person and the diagnosis you have made;
Summarize the treatment data in lay terms and discuss options in terms of lifestyle and evidence;
Co-construct the treatment plan with the patient using lists (pros and cons) or by clarifying prioritized stepwise plans to ensure clarity of choices and joint agreement on care decisions;
Review the plan regularly to facilitate open communication about patient priorities and needs; and how best to tailor the treatment to meet these needs.
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