Medicine from the heart . . . Sara Shields

On Thursdays, the Daily Voice showcases selected Thursday Morning Memos, reflective essays about clinical experiences written by faculty, alumni, residents and students of the Department of Family Medicine & Community Health and, occasionally, contributors from other departments. Thursday Morning Memos is UMass Medical School’s homegrown version of narrative medicine, in which the authors process their experiences through writing. To learn more, visit: http://www.umassmed.edu/news/articles/2011/personal_stories.aspx.

Associate Professor of Family Medicine & Community Health Sara Shields, MD, is a faculty member at Family Health Center of Worcester. Her essay addresses the ups and downs of one of the most seemingly mundane tasks in primary care: filling out paperwork. However, her reflections remind us how important those forms are for our patients and their own success stories in a country that still leaves some out in the cold without a form being completed.—Hugh Silk, MD

Paperwork

Paperwork, paperwork, paperwork. Above my desk hangs a quote from a medical information company: “Did you go into medicine to help people? To cure illness? To save lives? Or to fill out paperwork?” All health care providers these days know how it overwhelms and dominates our existences. At each patient visit, even the simplest, there are multiple pieces of paper involved—encounter forms, prescriptions, billing forms, not to mention the medical record itself, that albatross of paper record-keeping that hangs around all our necks. Even those with electronic medical records still find their medical lives involving endless forms, so that our daily work is far from paperless.

Somehow, in an inner-city community health center practice there are certain forms that I am supposed to complete for patients. I am delegated by society to be the one with the power to write letters or fill in forms that impact multiple non-medical aspects of my patients’ lives. My patients, seemingly innocently, present me with these forms to complete and sign, literally seeking some stamp of approval to take to their disability office, their apartment manager, their electric company.

Here are some examples. Frank is a man in his 60s with the competing illnesses of seizures and bipolar disorder, the drugs for one often sparking more symptoms of the other, so I have worked carefully with his neurologist and psychiatrist to find a delicate balance. He also has chronic liver disease, a herniated disc that has never before caused symptoms, and a pacemaker. He walks to my office (as he always has) one day with a sheath of papers requesting an electric scooter, “just like all these guys have in my apartment building, who I know can walk too.” I read the questions that I have to complete about Frank’s daily function and realize that he is unlikely to qualify, but agree to send the papers in and see what happens. When this is rejected, I offer him a referral to a physical therapist to get a more detailed opinion and also to see if there might be other modalities to help his back, now more symptomatic. He grudgingly accepts, hoping for his scooter, but the therapist calls me later that week saying Frank is refusing any evaluation or treatment plan other than insisting on the scooter. We agree that we will re-submit the forms but again predict rejection. Frank, frustrated, chooses another provider in my group.

Juanita, a woman whom I’ve cared for since my first week in practice here, brings in a form for the electric company, where I have to fill in a blank describing a chronic medical condition for which continuing electricity is necessary. This woman is a single mother with four children now under the age of 12. The oldest has struggled with behavioral and learning difficulties; the younger two are just beginning school but have mostly been healthy. It’s her second child who is named on the form, a sweet-tempered boy I met first as an infant with a history of failure-to-thrive and seizures, who eventually was diagnosed with a genetic disorder causing mild mental retardation among a few other medical issues. This now 10-year-old lad has been through several surgeries and careful nutrition plans as well as special education, and now apparently is thriving in school and takes no chronic medications nor uses any specialized medical equipment. I stare at this form as I think about this family and wonder what, if anything, is the connection between electricity and this particular genetic disorder. I decide that perhaps the electric company can figure that out so complete the form simply by listing the disorder and signing those magic two capitalized letters after my name that somehow have given me the power to influence this family’s access to basic utilities.

Eva is a morbidly obese woman approaching middle age whose Spanish is Puerto Rican vernacular—she and I both need a translator to figure out each other’s dialect. She comes for a pre-op physical for her upcoming laparotomy for a huge ovarian cyst. I have less than 15 minutes allotted to review her previous anesthesia issues, her smoldering newly diagnosed diabetes, and her probable asthma, as well as to try to answer her questions about the surgery. But today her biggest concern is not her fast approaching major operation, but her housing. She tells me that she doesn’t think she can recuperate in her cramped one-bedroom apartment, which at previous visits she has talked about sharing with her live-in boyfriend. She requests a letter to the housing authority stating that she “medically requires” a larger apartment post-operatively. I listen to her story, imagine her tiny apartment and her struggle to cope with what will surely be a long-healing abdominal wound, and finally write a letter that says “she will likely have an easier recovery in a larger apartment” and let the housing authority make its own decision.

Perhaps I am imagining my own authority here. Perhaps the housing authorities, the scooter store or Medicare authorities, the electric company authorities, laugh at the doctors’ letters that they receive. What higher administrator has decided that these letters carry any weight? How much weight do they carry? How much does my patients’ well-being (in whatever scooter-filled, electrified, roomier way they see this) depend on my letter that tries to be honest and objective? Am I silently voicing my opinion simply in the act of writing such letters? In my own urge to defy authority, to bring down nameless impersonal institutions, to entangle bureaucracy in the necessary messiness of individual human lives that don’t fit neatly into someone else’s check boxes, should I just write such letters for all my struggling patients? Maybe I should ask everyone at least annually, is there a bureaucracy that I can write a letter to for you?

Submerged in the deluge of such forms, I come up for air and smile in remembering such a letter written by a now-deceased colleague of mine. I found this letter accidentally about a year after his untimely death, hunting through the chart of one of his former patients for some consultation record. There was a copy of his handwritten letter to the electric company on behalf of this 60ish-year-old woman with psychiatric illness and chronic lung disease. “To Whom It May Concern: This letter is on behalf of my patient named above. She is under my care for her significant medical problems. Having electricity to run her refrigerator would greatly improve her functioning, as well as mine. Sincerely, Dr. P.” Somehow, every time I think of this tongue-in-cheek phrasing, I grin widely and can get through the next few such letters staring me in the face.

I want to take these forms seriously. I want to comb through my patients’ charts and find evidence to support emphatically their claims for disability. I want to understand the best way to phrase my summaries of their medical issues so that whatever happens to these forms next will allow them some chance at what they might deserve. But in the back of my head lingers the thought that maybe they are not really disabled, maybe given the right constellation of tinkering with their medicines, getting them a ride to their job, finding the right child care, that then they could hold down some sort of work that might somehow contribute to society. Immediately after thinking that, I have the much clearer thoughts that, in fact, this is all about how disoriented our society’s values are, that no one anywhere in this hugely rich country should have to resort to begging a doctor to sign a form in order to have their electricity continued, that beneath the surface of these harshly simplistic generic pre-printed forms are stories of people’s lives that get way too complicated to figure out jobs and budgets and bills in the way that I, in my middle class economy, grew up with and live daily. Somehow then these forms and letters make me profoundly sad, even as I try to find the humor in them that my colleague was able to.