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What a doctor can learn from being a patient

An internist’s cancer scare helps show her how care can be improved.


As an internist and infectious disease physician, I am, unfortunately, often the one who has to deliver bad news to patients and their families. But this time, as I sat in the urologist’s office in January, the dreaded words were directed at me: “You likely have cancer.”

It was ironic, I told the surgeon. In addition to being a clinician, I lead a team at the University of Massachusetts Medical School that helps state officials and health care providers implement new models of health care. Just two days earlier, I explained, I had led a retreat to kick off a pilot program for urologic cancer patients, the very thing I was about to become.


The pilot at UMass Memorial Health Care was for what’s called a “perioperative surgical home,” a model for a comprehensive type of care that starts the moment a decision for surgery is made and doesn’t end until the patient returns to the regular care of her primary care provider. The care is carefully coordinated among all the health care professionals involved in treatment, wherever that treatment takes place, and good communication is essential. The ultimate goal is to address the needs of the whole person, rather than just those of the diseased organ.

My surgeon raised his eyebrows and said, “I’d be interested in hearing how it goes for you, then.”

Here is how it went: The surgery to remove the tumor on my kidney was scheduled swiftly (I needed to get this thing out) and there were no surprises in the operating room. The surgeon said I would feel terrible and not be able to imagine going home on the second day, but that I would. He was right. In fact, he had set the expectations well, so that as I moved through the stages of recovery, I knew I was on target. This felt very reassuring.


Throughout the process, there was solid communication between the surgeon and my primary care provider, in part because my PCP had electronic access to my hospital records and I took the initiative to e-mail her myself. After my discharge, I also prompted follow-up calls with both my surgical and primary care teams. In health care reform lingo, we call this enhanced access; the idea is that you can have needs addressed without yet another trip to the doctor’s office. Was it special treatment for a doctor? New health care models would make it standard practice for everyone.

So what was missing from my treatment? Behavioral health integration. “Behavioral health” is a catchall term for care related to mental health, substance abuse, and the support for behavior changes that could improve a patient’s overall health. To achieve care that truly addresses the whole person, behavioral and physical health care must be integrated. And they should be: Integration has been shown to improve health outcomes and reduce overall medical costs.

Receiving a diagnosis that would likely impact my quality of life — perhaps even my survival — was not easy. Starting with those words in my urologist’s office, my mortality was staring me in the face, and I worried for my husband and children. In those moments, it would have been particularly helpful to have easy access to a behavioral health clinician. I really could have used that kind of help.

There is a widespread need for this type of care throughout medicine. Studies have estimated that a third of primary care patients have a psychiatric condition, while behavioral health conditions are even more common among people with chronic medical conditions. And yet 80 percent of patients with these conditions remain untreated or ineffectively treated in primary care settings because there is no behavioral health integration, according to a recent article in the Annals of Internal Medicine. Those inadequately treated patients experience higher health care costs, persistent illness, increased medical complications, disability, and premature death.


What would behavioral health integration look like? It begins with screening for behavioral health issues and conditions in PCP offices, but also emergency rooms and other settings. There would be no fussing with patients needing to schedule additional appointments, request insurance approval, or prompt their doctors by phone or e-mail. Instead, the ideal would be what we call a warm handoff from clinician to clinician, surgeon to behaviorist, working as a multidisciplinary team.

My tumor was completely removed, no further treatment was needed, and I have a good prognosis. For all this, I am grateful. But the outcome does not change what I found missing during my experience as a patient. Let’s face it, caring for the entire individual — her head as well as her kidneys — is just good care. The kind we all want for ourselves and our families.

Three months later, I am back on the doctor side of the exam room. But having had this experience as a patient has made whole-person care and behavioral health integration more than academic concepts for me. I now get it, deep in my bones.


My clinic recently hired a behavioral health clinician to work side by side with our primary care providers. When we have to deliver bad news now, it’s a team effort.

Judith L. Steinberg is a clinical associate professor at UMass Medical School, where she is also deputy chief medical officer for the school’s Commonwealth Medicine division and senior director of the Office of Healthcare Innovation and Quality. Send comments to