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Following up on patients referred for specialist care

What is a primary care doctor's responsibility to referred patients?

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA. Posted Dec. 20, 2010.

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The "continuum of care" physicians strive to provide for patients is by no means a well-established course of clinical actions and set responsibilities. Monitoring patients who have been referred entails complex intraprofesssional and health system challenges as well as clinical decision-making.

Reply: Most patients with chronic disease -- whether cancer, congestive heart failure, renal failure or HIV -- are diagnosed in the primary care setting and often referred for specialty care. The ongoing role of primary care physicians in managing patients with chronic disease depends on a host of patient, physician, intraprofessional and system factors and is likely to evolve during the course of illness.

In the American College of Physicians' definition of a patient-centered medical home model, the role of the primary care physician is to "work collaboratively [with a team of health professionals] to provide high levels of care, access, communication, care coordination and integration, and care quality and safety." Yet there are challenges to doing so. Primary care physicians may need to juggle relationships with more than 100 doctors in different medical practices and systems, according to a study of Medicare patients. I offer a case based on experience to highlight challenges and opportunities as we work to enhance collaborative care.

The patient -- I'll call him Mr. Sullivan -- was 75 with a history of prostate cancer who had been followed by the same primary care doctor for several years. Though his prostate cancer had been inactive since his initial radiation and hormone treatment five years earlier, he continued yearly visits with his urologist. Despite years of sharing care duties for this patient, the urologist and primary care physician -- let's call her Dr. Warren -- had no compelling need to remain in close communication about his care. They practiced in different health care systems, and his disease was clinically stable.

During a routine visit with his urologist, Mr. Sullivan had a prostate specific antigen test done, and the result was higher than it had been. Following routine laboratory protocol, the test result was sent to both the urologist and Dr. Warren. When she received the test result, she had to decide what action, if any, to take. Should she do nothing and assume that the urologist would take action on the abnormal finding; contact the urologist to review the finding and discuss the planned course of action; call the patient to make sure that appropriate follow-up with the urologist was made; pursue additional work-up without urology input; or some combination of these options?

Several factors contributed to Dr. Warren's decision: how well she knew the patient, how able she thought he was to understand the implications of an abnormal test and the necessity to follow up, how well she knew the urologist, how easy or difficult it was for treating physicians in different health systems to communicate, and how organizational norms governed expectations for interactions between the primary care physicians and specialists.

Because Dr. Warren had a long-standing relationship with Mr. Sullivan and his son, who was his formally designated health care proxy, she was confident that they were reliable and would follow through on recommendations. Dr. Warren informed Mr. Sullivan's son about the finding and advised him to contact the urologist. At the next follow-up, Dr. Warren learned that Mr. Sullivan's son had contacted the urologist but had not heard from him and had interpreted the lack of response to mean that no additional action was required.

At this point, Dr. Warren faced further decisions. Was it her job to find out why the urologist had not responded to her patient's son? Should she call the urologist to discuss care? Should she repeat the PSA? Dr. Warren had to consider how to offer quality care to her patient without stepping over the boundary of the primary care-specialist relationship.

The American Board of Internal Medicine's Physician Charter outlines a professional responsibility of physicians' to commit to improve quality of care through "working collaboratively with other professionals to reduce medical error [and] increase patient safety." Putting the care and safety of her patient foremost, Dr. Warren decided to repeat the PSA. The test result showed that the value had more than tripled to more than 20, a number she knew indicated a high likelihood of metastatic disease.

Dr. Warren immediately contacted Mr. Sullivan and the urologist with the test results. A follow-up appointment with the urologist was expedited and, shortly thereafter, Mr. Sullivan underwent a metastatic work-up and began a course of antiandrogen treatment. Concerned about the cancer's progression, Mr. Sullivan and his son asked Dr. Warren about other treatment options.

In this case, Dr. Warren curbsided a close medical oncology colleague and learned there were issues between urologists and medical oncologists when it came to caring for patients with advanced prostate cancer. The colleague recommended referring Mr. Sullivan to an oncologist. Dr. Warren's decision to refer at this point may have been different if she had a closer professional relationship with the urologist, if they been members of the same health care system, if system factors made communication easier, or if Mr. Sullivan expressed full trust in his urologist after the sudden change in his disease.

Mr. Sullivan proceeded with a visit to the oncologist, and Dr. Warren now had the task of reviewing the recommendations of the two specialists and explaining, if necessary, why different strategies were proposed. As it happened, the oncologist recommended a similar course of treatment and advised that the patient return to the care of the urologist with intermittent follow-up with the oncologist. Mr. Sullivan and his family felt more confident and resumed treatment.

Subsequently, Mr. Sullivan developed musculoskeletal pain, and scans confirmed that he had bone metastases. At this point, with Mr. Sullivan suffering from pain, loss of energy and depression, Dr. Warren resumed a primary physician's role in his care. The oncologist recommended radiation therapy, while the urologist was less inclined to continue aggressive treatment. In discussing these options, Dr. Warren introduced the palliative care alternative. Hoping to reduce pain and avoid death, Mr. Sullivan proceeded with radiation, but tolerated it poorly. His condition worsened clinically, and he was admitted to an acute care hospital.

After several days, he was discharged to a nursing home without hospice care. When Mr. Sullivan decompensated in the nursing home, comfort care measures were taken. Dr. Warren maintained contact with Mr. Sullivan and his son until Mr. Sullivan died. Thinking about his father's death, Mr. Sullivan's son wondered whether proceeding with radiation had been the best choice but underscored the need for his father to hold onto hope that the cancer progression could be halted.

In our commitment to lifelong learning, self-evaluation and improving continuity of patient care, it is important to review if any of the outcomes in Mr. Sullivan's case were affected by the processes of caregiving. Should Dr. Warren have taken the lead in the care process, deferred to the specialist or collaborated more actively? As primary care physicians engage with countless specialists, such decisions are commonplace.

The driving force for our medical decision-making is to serve the patient's best interest. Yet factors such as intraprofessional relationships and system constraints can support or impede communication and collaboration.

Though primary care doctors rely on input and consultation with specialists, they are in the unique position to offer a holistic approach to the patient, focusing on the entire person and coordinating his or her care. This is the hallmark of delivering patient-centered care in the medical home. As we strive to create medical homes, we must work within and across our health care systems to find the means to enhance intraprofessional collaboration and communication -- foundational elements in creating a safe and sturdy medical home.

Larissa Nekhlyudov, MD, MPH, assistant professor, Population Medicine Dept., Harvard Medical School; general internist, Harvard Vanguard Medical Associates

The Ethics Group provides discussions on questions of ethics and professionalism in medical practice. Readers are encouraged to submit questions and comments to [email protected], or to Ethics Group, AMA, 515 N. State St., Chicago, IL 60654. Opinions in Ethics Forum reflect the views of the authors and do not constitute official policy of the AMA.

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