Why do patients with cancer get better care than my patients in primary care?
As the senior resident on my hospital's inpatient leukemia service this past month, this question troubled and intrigued me daily. Despite the sheer complexity of treating leukemia (administration of chemotherapy, bone marrow biopsies, stem cell transplantation), the resources required (transplantation routinely costs $1 million), and the severity of the illness (patients with little to no functional immune system), I couldn't help but marvel at how coordinated, integrated, and patient-centric the care was.
From the first day I saw that things in leukemia worked differently. Most inpatient ward teams consist of an attending, a senior medical resident, one or two interns, and medical students. Each member of the team is "on service" for 2-4 weeks after which they rotate to different parts of the hospital or to the outpatient or research setting. As a result a patient admitted to general medicine today is taken care of by a completely different team than took care of her 3 months earlier when she came in for the same problem. On leukemia, our medical team included an advanced practice nurse (APN) who did not rotate off and on service. Being on the inpatient leukemia team was her primary responsibility 365 days a year. When I wondered if a patient admitted for chemotherapy needed an interval CT scan, she would remind me that the patient had just received one a month earlier. When the patient later developed a rash that I considered getting a biopsy of, she reassured me that the rash looked no different than the one the patient had developed the last time she received chemotherapy. And when I was trying to determine which prophylactic antibiotics to discharge the patient on, she contacted the primary oncologist to get his opinion and, if necessary, arranged prior authorization for medications that her insurance company might otherwise deny coverage for. Perhaps most importantly, our APN was a constant presence for patients fighting a disease that wrecked havoc on their bodies and their lives. Often when the medical team finished examining a patient, the patient would ask to speak to our APN privately, no doubt to receive additional emotional and psychosocial support, something that is terribly lacking in many patients with chronic disease yet serves to reduce treatment breaks and improve adherence and identify co morbid conditions such as depression that are common but often go unnoticed.
Then there was the weekly leukemia conference I was reminded to attend. Thinking I was walking into another research lecture, I was surprised to learn that this meeting was really a "tumor board" in which new and active patients were discussed. Sitting around the expansive conference table were leukemia attendings and fellows, advanced practice nurses, social workers, case managers, and the inpatient leukemia team. We began by discussing the admitted patients with my team providing the updates and the outpatient oncologist providing context and overall direction. I left with a better understanding of my patients while my intern jotted down to-dos and made notes for herself. We then discussed the new patients - while multiple leukemia specialists went back and forth formulating the diagnostic plan and initial chemotherapy, the case managers and social workers figured out how to best coordinate the dozens of steps required to place a central line, draw routine blood tests at home, and schedule chemotherapy and follow up visits. Finally, everyone was encouraged to bring up concerns about any patient on the roster. In general medicine, doctors are often left to deal with complex medical and social issues with little input from others. Though I'm in a large group practice of over 100 primary care physicians we have no clear and formal mechanisms for asking and receiving advice from each other on individual patients. In addition, despite the fact that many of the day-to-day challenges of primary care center around not the medical but rather the socioeconomic determinants of health, I do not have access to dedicated social work and case management services.
At the conference we each received a roster of all the patients the group was actively managing. Each line of the roster included the patient's name, date of birth, type of leukemia, and treatment plan - nothing surprising. But in addition, it included the name of any clinical trial or research protocol the patient was on. Flipping through the roster, I was stunned to see that virtually every patient was enrolled in a research study of one sort or another. Those who were not in a study of a new experimental chemotherapy or drug (Phase I or Phase II trial) were instead on a study to collect and track patient responses to an established leukemia treatment. General medicine is no less cutting edge than leukemia; many of our treatments have no good data supporting their use and new drugs come out each year. And yet, to my knowledge, I don't have a single patient in my practice on a research protocol. Worse still, we don't even analyze our own data. If you asked me what the average HbA1c is for my patients with diabetes, I couldn't tell you. In comparison, the oncologists at my hospital can report their institutional survival rates for specific types of leukemia by age of diagnosis, gender, and ethnicity.
This dedication to building evidence was matched by a commitment to use the available evidence. At times it almost seemed as if they were speaking another language. Sentences often were punctuated by phrases such as "per the CALBG 10580 protocol" and frequently, recommendations were accompanied by specific citations from the oncology literature. In primary care, most of our recommendations are based on experience or habit; seldomly we may refer to a consensus guideline. It's no wonder then that studies shows it takes 7-10 years after a new guideline or seminal study is released for practice patterns to change. It's not that such data doesn't exist - it's just that often we just aren't using it.
Perhaps the best evidence in support of the care we provided our leukemia patients came from my most startling observation: nearing the end of my 4-week rotation I have yet to admit a single patient from the emergency room. In general medicine, by contrast, well over 90% of admissions come from the ER. ER admissions are undesirable for a number of reasons. For one, everything in the ER costs more. Though I have never verified this myself, it is rumored that ERs routinely charge $200 for a single dose of aspirin. Furthermore, because ER doctors are trained to address the worst-case scenario and often know little about the patients besides what is written in the medical record, patients often get unnecessary and expensive tests and procedures in the emergency room. Finally, because leukemia is so super-specialized, leukemic patients are also at risk for substandard care from ER physicians who are generalists by nature. How are inconvenient, costly, and potentially suboptimal ER stays avoided in leukemia? At diagnosis and frequently thereafter patients with leukemia are educated about the signs and symptoms of serious complications such as infection. When fever or another acute issue arises, they have a clear care plan. They know who to call and can often reach their primary oncologist directly. Physicians that receive the call triage patients over the phone. If the patient needs to be admitted, she will be told to come into the hospital directly where an inpatient bed will have already been arranged and where the resident on call (e.g., me) will have already been made aware of the oncologist's concerns and given an initial plan and workup. Patients that need to be seen urgently but necessarily admitted will be scheduled for a same day or next day appointment. Because every doctor in the group knows each patient (thanks to the weekly leukemia conference), even if the patient's provider does not have a clinic spot available the patient can be seen by another provider.
So why do my primary care patients not get as good a care as my patients on leukemia? It's not that primary care doctors are bad and leukemia doctors are good. Clearly it's not that simple. Reimbursement in oncology is higher than in primary care, and in general oncology has a higher proportion of commercially insured rather than publicly insured patients. This gives oncologists resources primary care physicians can only dream of - outpatient laboratory services, IV infusion suites, advanced practice nurses, and dedicated case managers. Oncology also receives greater NIH funding, which supports research of new and existing treatments, and funding from philanthropic institutions and charity (think "Live Strong" and breast cancer awareness). It is also a more narrowly scoped field that requires fellowship training, compared to primary care which spans three different specialities (internal medicine, pediatrics, and family medicine) and includes general and subspecialty trainees. But some of it is cultural as well. When I asked one of my leukemia attendings to explain why there were so few ER admissions, his answer was that leukemia specialists viewed inpatient and outpatient care as part of the same continuum of care and took responsibility for patients over the full cycle of care. Comparatively, in general medicine, outpatient and inpatient care are treated quite separately, a reality that has been formalized by the growing hospitalist movement, in which patients admitted to the hospital are taken care of by a group of physicians wholly separate from their outpatient providers.
As primary care doctors, we often argue that we need more resources, better compensation, and greater reimbursement. I agree on all fronts, and in fact many of my observations above only support this notion. But I think even with the resources at hand there is much we can improve upon. We must become more scientific in our methods, more integrated in our care, and more patient-centric in our approach. We need not wait for change in Washington to get started. We can begin by taking a closer look at our peers and learning from their successes, starting (at least at my institution) with leukemia. This will provide useful answers to the important question of why the care of oncology patients seems to be better than that of general medicine patients. As I leave the world of oncology and return to general medicine, I can't help but ask myself another question: what would happen if my primary care patients benefited from the same systems of care as my patients in oncology? How much better off would they be? I'm not sure of the answer, but given what I observed this past month, I would love to find out.
Copyright Shantanu Nundy, M.D.