Tuesday, May 10, 2016
Charlotte is three and a half years old. She loves stories. I tell real stories. John tells made up stories. The first words we hear when Charlotte walks in the house are “Tell me a story, PaPa!”
Stories put me on a path more than 40 years ago. The path to being a doctor and then a hospice and palliative medicine doctor. I listened to my grandmother tell stories about her physician father leaving the house to check on a woman in labor or a dying patient. He might not return for days. His payment ranged from a chicken to a milk cow to a beat up John Deere.
I listened to my dermatologist father tell the story of a woman who wiped herself with poison ivy leaves after peeing in the woods. He told my three siblings and me that it’s always best to drip dry when camping if you can’t verify the exact nature of your toilet tissue.
I listened to my teachers in medical school, physicians with years of experience, tell patients’ stories to ensure we would not repeat their mistakes. One of my favorite came from an internist who taught me during my second year. A patient nearly bled to death from an AVM in his bowel which had almost certainly been bleeding for days. The internist asked the patient why he didn’t seek help when he saw the blood in his stool. The patient replied that he never looked at his stool, that was disgusting. I can still see the internist shaking his head, admonishing us to never flush before we inspected our own stool.
I am reading Internal Medicine: A Doctor’s Stories by Terrence Holt, MD. It is an evocative book about medicine residency that had my long-dead intern-year butterflies swirling by the second page. In his introduction, he details how difficult it is to tell a patient’s story without identifying that person. It’s “not enough to respect the patient. As long as there’s an actual, unique individual beneath that disguise, you’re making a spectacle of somebody’s suffering, and that’s a line no one should cross. It’s bad for the patient. It’s not good for you the writer, either.”
I would argue that it is essential to continue our story telling in medicine. And that they are real stories about real people because that’s who we treat. We don’t treat made up people with made up diseases. We get KUBs to diagnose constipation because many don’t examine a belly anymore. We may be one step away from putting made up stories in the chart because that’s the only kind of story we tell students.
The cautionary tale I emphasize in my opioid management talk illustrates why you shouldn’t use methadone unless you’ve had special training in how to do so safely. He was a 60-year-old with head and neck cancer, he had weeks to months to live and he had neuropathic pain refractory to other opioids and adjuvants. I started a rapid rotation in the hospice inpatient unit. I stayed just inside the published guidelines for methadone titration in severe pain. He stopped breathing at 3AM and required a naloxone drip and transfer to the MICU for 24 hours. He did well on a lower dose of methadone and lived for 6 more months with good pain control. I tell the residents that methadone will bite you in the ass. It hasn’t bitten me since but I learned from his story and I pass it on. I don’t say his name but it’s him. He is imprinted on me.
I tell my own story about when I fell off my mountain bike and broke my hip in two pieces. I took 5mg of hydrocodone each of the three night until I had my total hip replacement. That was enough. Then 12 hours after surgery, when the bupivacaine liposomes wore off at home, I was trapped in a red bubble of pain and misery. I took that same 5mg of hydrocodone times four tablets, a meloxicam and an aspirin. It’s no wonder people take too much Tylenol and get into trouble with their pain control.
I have cared for people with issues that are hard for others to look at. One family struggled with their loved one’s cancer that was visible from the outside. A sister cried every time she saw it. A brother became physically ill. They asked me if this was the most awful thing I had ever seen (their words)? I told them there is nothing the human body can do that is too awful for me to look at, to touch or to comfort. I told them the stories of three other people who had cancers that were visible and the ways that they, their families and caregivers were able to cope. They expressed their fears, found common ground in the stories of others and moved forward with the care of their loved one.
Stories are what sustain and inform our profession; they inspire, they instruct, they give comfort. They should be real stories. I ask every patient and family if I may share their story. None have yet told me I may not. Stories brought me to medicine and keep me in medicine. Real stories.
Dr. Staci Mandrola is a wife, mom, grandma and palliative care doc working as part of a super awesome team at the Robley Rex VAMC.
Image credit: "A Story Book comes to life" by ClaraDon via Creative Commons BY-NC-ND
(Ed note: Link to Internal Medicine: A Doctor's Stories by Terrence Holt MD is an Amazon Affiliate Link to help support Pallimed's not-for-profit and volunteer efforts.)