Listen to Patients: We are Experts in Our Care
By Penelope Ann Shaw, PhD
A couple months ago, I went to the walk-in clinic of the hospital where I am a regular patient, with the flu. I usually just let flus work themselves out, but I was concerned as my eyes were running and wouldn’t stop. I spoke first to the nurse and then to the physician. Immediately, when I met with the physician, board-certified in internal medicine, there were problems with our interaction and the care she wanted to provide. But it was only afterwards, with reflection and analysis, that I could reconstruct what happened.
The physician was clearly concerned, but overly so. She looked to her computer screen, the light reflecting on her face, and went over my complex medical history and multiple chronic health conditions first before listening to me and addressing the symptoms I had come with. My conditions are numerous: Guillain-Barre syndrome, a rare neuromuscular disorder, with complications of quadraparesis; low platelet counts; low white cell counts; and dilated blood vessels. I also have conditions common to those of us with paralysis who are unable to walk and are not weight bearing: osteoporosis with spinal compression fractures and kidney stones. I’m diabetic but healthy with an A1c usually around 5.6. On the warm day I saw the physician, I was barefoot and my left foot was a bit swollen from poor positioning on the footrest of my new power chair. Reading this list, it looks like a lot, doesn’t it?
But since I’m stable, lead a full and interesting life, and have learned how to manage my own complex care, I don’t give much thought to all of this. But the physician, I realized later, was overwhelmed by my medical issues. Our communication was poor. She did not address my runny eyes, even after my three attempts to have her do so. She wanted to bump me immediately to the ED, and suggested right up front that I might have an infection in my left foot that had spread, causing my flulike symptoms.
Disability advocates like me believe that we are the experts in our care in many ways. So, I suggested that I have some imaging and some bloodwork instead. She agreed. The imaging showed a little soft tissue damage in my foot, but my white cell count did not indicate an infection. I explained the redness on my foot was from dilated blood vessels, and the swelling from poor positioning on the footrest of a new power chair. But the doctor wasn’t satisfied. She still wanted me to go to the ED for a comprehensive assessment. I felt increasingly uncomfortable with her. Confident I only had the flu, I told her I wasn’t going, essentially refusing more care in order to stop her. I trusted my own judgment, and I had the right to take that risk.
She panicked and had me sit in the waiting area, while she paged my primary care physician, which made me feel upset, unsafe, and very angry. Her paging my physician was humiliating, like calling my mother because I’d been bad. She didn’t show respect for the rights, autonomy and dignity to which I was entitled. I remain stunned at her unethical lack of professional boundaries. Don’t all physicians know patients have the legal right to refuse treatment?
I returned home, and now I am fine. My eyes stopped running. My ophthalmologist told me later I’d had a brief bout of dry eye. After I made a small modification to my footrest, my foot is no longer swollen. I definitely had only the flu, an appropriate reason to go to a walk-in clinic.
Shortly after this clinic visit, I ran into a recently-retired nurse acquaintance at the mall. When I told her the story, she eagerly asked if I’d gone to the ED. She was delighted when I said no. She said that’s one of the biggest problems the ED has: primary care physicians sending patients who do not need that level of care.
There is a lesson here for clinical and professional development, an area of practice in need of improvement. Physicians often think they are listening to patients, but they aren’t. Primary care physicians who meet new patients with rare and complex medical histories need to listen to and learn from the expertise of patients who may have a lifetime of experience managing their own condition. If the physician at the walk-in clinic had been willing to listen to me, we both would have been less anxious and distressed, and I would have gotten the care I needed with dignity.
Penelope Ann Shaw is a former teacher of English as a second language and a doctor of French language and literature. Now a nursing-home resident, Shaw is a member of the board of the Massachusetts Advocates for Nursing Home Reform and of the Disability Policy Consortium of Massachusetts. She was named a “Trailblazer in Elder Care” by the U.S. Department of Health and Human Services’ Administration on Aging’s Administration for Community Living. She was a 2016 recipient of a National Consumer Voice for Quality Long Term Care Leadership Award.