Small indignities

No one ever said being a patient was easy. But what they don’t warn you about is the small stuff.

Crystal Phend, a reporter for MedPage Today, recently blogged about a trip to the knee specialist. No, an unusual flare-up of pain in her knee wasn’t a new injury, she was told. The doctor “gave me an educational sheet, answered all of my questions, and walked out,” she writes.

Wait… did this mean the visit was over? Was the assistant coming back? Was it OK to change back into her street clothes? Should she stop at the front desk to see if she needed to make a co-payment?

Phend wonders: “Could it be a matter of courtesy to finish with some signal of what comes next?”

Her post prompted a couple of readers to voice their own frustration with some of the little slights and oversights that patients often encounter at the doctor’s office. Wrote one person:

First thing the nurse does after she calls you in is to weigh you. Most people are carrying a bag or wearing heavy clothes that need to be placed aside. The only place to put it is on the floor!!! No hooks, no desk or chairs around the scale. Ridiculous.

Why can’t clinics have a shoe horn available in the exam room to help make it easier for patients to put their shoes back on, someone else wondered. This same person concluded, “It may cause me to think a bit more consciously of maintaining my health so as to avoid the indignities, large or small, one encounters in going to the doctor’s for routine care.”

In some of the online cancer forums, I’ve seen patients, usually women, voice their frustration with radiation treatment facilities that don’t have changing areas, forcing patients to undress next to the linear accelerator – often while technologists are in the room, setting up for the treatment session. Judging from many of these anecdotes, some facilities don’t even have hangers or hooks for patients to hang up their clothing.

The list of little rudenesses could go on and on. Need I mention clinicians who barge into the room without knocking, or don’t bother to close the door? Or the frequent failure to explain to patients what is being done to them and why?

Then there are The Rules, the unspoken set of expectations for how patients are supposed to navigate the system. Jessie Gruman, president of the Center for Advancing Health, is undergoing treatment for stomach cancer and recently blogged about the challenges of trying to follow the rules:

As far as my chemo nurse Olga is concerned, I can do nothing right.

She scolded me for sending an e-mail when she thought I should have called and vice versa. She scolded me for going home before my next appointment was scheduled. She scolded me for asking to speak to her personally instead of whichever nurse is available. She scolded me for calling my oncologist directly. She scolded me for asking whether my clinical information and questions are shared between my oncologist and the staff of the chemo suite. I could go on…

“Funny,” I think to myself. “If she had told me the basic ground rules of interacting with her and her colleagues, I would have been happy to follow them. Otherwise, how am I supposed to know – guess?”

Gruman cites interviews conducted by the Center for Advancing Health on the many frustrations people face in communicating with health care providers: “People can’t figure out how to get their test results. They are puzzled about whom to call after hours or on weekends. They are baffled about whom they should talk to regarding billing and insurance problems. They are flummoxed by the new and unfamiliar demands placed on them by different sources of continuing care: rehabilitation hospitals, cardiac rehab, oncology suites, neurologists and other specialists and, for some, unfamiliar primary care medical homes.”

It’s not that health care providers don’t care. Most of them do. But they’re often busy and overworked, and many have forgotten – or maybe never stopped to think – that what’s familiar to them is vastly unfamiliar to patients. What providers might perceive as insignificant, such as expecting patients to place their coat or handbag on a perhaps not-too-clean floor while they’re weighed on the scale, can easily be perceived by patients as inconsiderate or even disrespectful.

Is there a difference in being cared for as a patient and being cared about? Several years ago Elaine Feder-Alford, a faculty member at Towson University in Maryland, spent eight days in the hospital with streptococcal pneumonia. In “Only a Piece of Meat,” she describes how her dignity and her sense of personhood and control were stripped away by hospital staff intent only on the clinical aspects of her care. Here’s just one example of how it affected the patient: At one point, a nurse comes into her room to add potassium to her IV drip, then quickly leaves. Moments later, Feder-Alford starts to experience a burning, stinging sensation in her arm. Her family calls for the nurse, who comes back in and adjusts the pace of the drip. Feder-Alford writes:

I wonder why the nurse couldn’t have stayed with me for just a few moments after she administered the potassium so that she could monitor my reaction to the drug and regulate it accordingly. That would have been for me a moment of caring.

So much of the discussion about health care is focused on the big things - cost, utilization, hospital readmission rates, infection prevention, evidence-based care. To be sure, these are important, but whatever happened to the small things? It would cost next to nothing for radiation therapy facilities to bring in a portable folding screen so patients could have a little privacy while they’re changing. An extra minute in Feder-Alford’s hospital room would have saved the nurse a second trip and avoided discomfort for the patient. More than that, it would have been a kindness – one of those small thoughtfulnesses that matter to patients but often get overlooked because they’re, well, small.

When it comes to the patient experience, small is anything but small.