Marla (not her real name) came to our clinic with breast cancer. The clinic nurse stopped me before I went into Marla's exam room. "She's different," the nurse whispered to me. "The last doctor just threw up his hands."
In her 40s, with long blonde braids and blue eyes, Marla dressed in flowing robes, as if she had just walked off the set of "A Midsummer's Night Dream." She smiled and spoke softly as she answered my initial questions but became more animated when she began to describe her lifestyle and the kinds of herbal supplements she took.
It turned out that Marla was like my mother, a preventive health and alternative medicine enthusiast. When Marla heard that I, as a child, had choked down bowls of pungent, muddy brew boiled up from unrecognizable Chinese herbs and shriveled animal parts, she laughed so hard that tears welled up in her eyes. She had served similar concoctions to her loving but apparently long-suffering husband.
But throughout our conversation, I noticed that despite her laughter, Marla never moved. She sat stiffly, hunched over and cocked slightly to the left, with her left arm bent against her chest, as if cradling a baby.
Two years earlier, Marla had noticed a pebble-sized lump in her left breast. Her primary care physician scheduled her for a mammogram, but Marla wanted first to try alternative remedies, so she skipped the appointment. She never went back to see her doctor because she felt that as soon as she began talking about other treatment options, he "shut down. "
Months later, when it became clear that the mass was growing and not shrinking, her husband suggested she see a surgeon. "I thought I could take care of it," she said to me, recalling the sequence of events, "but I guess not."
Little could have prepared me for what I saw when Marla opened her gown. While the right side of her chest was unremarkable, her left breast was the size of a young child's head. The skin was stretched thin, and I could see an outline of the tumor within. That tumor was so large and so heavy that it seemed to pull the rest of her body down. Marla hunched over oddly and cradled her left arm not out of habit but to support the weight of the cancer within her breast.
We admitted Marla immediately to the hospital and removed her cancer the next day. Fortunately, the tumor was not an aggressive one, but her operation was far more extensive and fraught with risks than it would have been two years earlier. And as much as I liked Marla personally and enjoyed our conversations, I was also frustrated that she hadn't come forth sooner with some doctor about her cancer.
Marla was not the first patient I had seen who had waited until her cancer was advanced before seeing the doctor. But I have learned over the years that while my initial reaction is always to question if I or any other doctor missed the diagnosis, the situation is not always so cut and dry. While I need to understand and respect the beliefs of my patients, I still can't escape feeling a certain level of responsibility as a doctor. I find myself wondering when it comes to patients like Marla or others whose diagnoses are delayed for various personal, social and economic reasons, how responsible am I as the physician and are they as the patients?
Diagnostic failures, or diagnoses that are delayed or in error, are an increasingly popular topic of research in patient safety. While some researchers have focused on the role of doctors — are there flaws in the way they think? are "gut reactions" reliable? — others have looked at the steps involved in care, or the process of care. What has emerged most recently from this latter group of studies is that diagnostic failures are often due to missed steps, so-called "process of care lapses," that stem from both doctors and patients.
In the June issue of The Journal of General Internal Medicine, for example, investigators from Harvard Medical School studied the records of over 100 women with breast cancer diagnosed late or at advanced stages and found that roughly a quarter of patients had experienced process of care lapses. Examples of such lapses included inadequate physical exams, delayed physician involvement and incomplete diagnostic and laboratory tests. But while the investigators discovered that nearly 20 percent of the women were missing as many as two or more steps in their care, they also found that doctors and patients contributed equally to the resulting diagnostic failures.
"Clearly we found that about half of the process failures were due to something the patient did," said Dr. Saul N. Weingart, lead author of the study and a practicing internist and vice-president of Quality Improvement and Patient Safety at the Dana-Farber Cancer Institute in Boston. "These patients missed their mammogram appointments or never went to see the specialists their primary care physicians had recommended."
To address these lapses, experts in the field of patient safety like Dr. Weingart have proposed a variety of strategies to strengthen patient follow-up. One strategy that many physicians already use in one form or another is a "tickler system," electronic or paper reminders to check that diagnostic testing or referrals are completed. Other ways include implementing a type of technology that allows physicians to check specific tests across their entire practice, or panel, on a monthly basis. With "the push of a button," a doctor can see which patients have not yet followed through, for example, on their mammogram appointments.
And perhaps just as important as any technological change is one that involves transforming deep-rooted practice patterns. "It's not part of practices now," Dr. Weingart said, "but you can imagine creating an expectation among the medical community where if patients don't go, the referring doctors or practices will notify you."
But there are hidden obstacles in care as well. When Dr. Weingart and his co-investigators looked more closely at the group of individuals who had experienced lapses, they found that many were patients who were particularly vulnerable: they were minorities, possessed less education and came from challenging socioeconomic backgrounds, all of which contributed to practical obstacles or poor health literacy.
These findings "suggest that there are some intangible barriers," Dr. Weingart remarked. "Perhaps these patients don't know how to access care, need an interpreter, live farther away, or may be overwhelmed by family responsibilities. All of these factors are distractions for a patient and make getting care all that much harder."
In order to address these intangible barriers, Dr. Weingart suggested that "we need to develop not only risk assessment tools but also services geared toward patient vulnerabilities." But given that many physician practices, particularly those in the community, are already overstretched, organizing and maintaining such services may be close to or simply impossible. "Often when I talk to community practices about these findings," Dr. Weingart added, "the doctors will tell me that they can only do so much. When a patient doesn't show up, do I have to track him or her down? How many letters do I have to send the patient? What constitutes due diligence?"
How much responsibility, then, do doctors — and patients — bear in diagnostic failures?
"I don't think it's 50-50," Dr. Weingart reflected, "and I also don't think it's 100-zero. I think there's a shared responsibility. But given that the patients who fall through the cracks are usually the least resourceful and most vulnerable, there is at least a moral obligation for clinicians and health care systems to provide a robust safety net for these patients.
"I think we physicians need to support patient responsibility, but we also need to get our own house in order first. In terms of process failures, we need to make sure that the current system under health care providers is airtight. After we get that figured out, we then need to think about ways to help our patients do what they need to do."