Doctors are regularly deluged with advice on how to engage patients. But how can you, as a patient, get your doctor to truly engage with you as a person? Your health and even your life could depend upon it.
By “engage,” I don’t mean just the doctor not interrupting after 11 seconds. That’s the average time a patient talks before the doctor interjects, said a study published earlier this year, down sharply from the “leisurely” 18-23 seconds patients on average spoke uninterrupted in studies from 1984 and 1999.
This rapid interaction may be fine when you’re trying to figure out if you have a broken ankle, but that perceived absence of empathy can significantly harm your physical and mental wellbeing if your problems are more complex. At our Society for Participatory Medicine’s conference in October (I’m a member), three strategies stood out for patients to short-circuit being given short shrift. [Editor’s note: each of these stories is from a member of our Society. To explore joining see our Join Us page. – Dave]
How to respond when your doctor interrupts
1) Individual flair can ignite conversation
Kate Sheridan was 11 years old when she was diagnosed with Lyme disease. Over the next three years, she was referred to more than 30 doctors and was hospitalized five times. The complications from her condition, Kate wrote in a blog post for the Mayo Clinic, changed her from a straight-A student to someone unable to read or write, from a competitive athlete to being bedridden and from an extrovert to feeling isolated.
That feeling of isolation was reinforced by periodic, panicked visits to the emergency room. “The first few visits all saw the same pattern – I was a diagnosis, passed from hand-to-hand until discharge,” she wrote.
Then, when Kate was in 11th grade, a chance comment by an emergency medical tech about her colorful sneakers sparked an idea. She deliberately ordered oversized, multi-colored shoes. These “gave me a talking point with my providers and a reputation in the Emergency Room,” she wrote. “With every new diagnosis and treatment, the sneakers became louder.”
Shoelaces were soon replaced by scraps of cloth, and Kate splashed the shoes themselves with neon paint. Gradually, she emerged “as the goofy kid with the weird sneakers,” not just a “patient” – and her care changed. For example, nurses took more time to be gentle while inserting an IV. And, of critical importance for someone with a complicated medical history and multiple medications, “doctors were willing to hear my whole story and not just a summary. When I had my shoes, I had my voice.”
Kate, often too sick in high school to attend classes, is now pursuing a master’s degree at the University of Oxford.
2) Appeal to the physician as both scientist and healer
To paraphrase the famous Michael Jordan commercial, what turned the tide wasn’t just “the shoes.” Kate and her parents also painstakingly assembled a spreadsheet for her doctors that tracked her symptoms, both mental and physical, and the effects, good and bad, of the treatments.
“Data has power,” Kristina Sheridan, Kate’s mom, told the meeting. (Kate was in England.) “We produced this chart from her voice.”
The strategy of explicitly appealing to the physician as both scientist and healer – to logic and emotion alike – is what saved Doug Lindsay’s life.
Lindsay was someone who loved to dance, play banjo and tell stories until, at age 21, he suddenly found himself barely able to sit or walk. His symptoms resembled a severe case of chronic fatigue syndrome. Confined to a wheelchair, he dropped out of college and quickly began to feel invisible.
As an article about his predicament put it, “Sick, the guy who never had trouble finding an audience couldn’t get doctors to listen to him.”
“Sick and terrified,” Lindsay began reading medical textbooks. Searching for a condition that was rare, he came upon a disease of the autonomic nervous system. Fourteen years after his life was shattered, now healthy, a strong-voiced advocate striding back and forth in front of an audience, Lindsay recounted where he began and what changed.
“I wrote to doctors,” Lindsay said. “They responded, ‘Problems like what you say you have don’t exist.’ But I said, ‘They could.’”
So began an arduous journey to enlist physicians and researchers as collaborators in, first and foremost, finding a diagnosis; in this case, that turned out to be an adrenal gland hyperactivity known to affect just 32 patients worldwide. The next step was discovering (or, as it turned out, Lindsay actually helping his doctors invent) a possible treatment. Finally, and perhaps the hardest job of all, was enlisting a physician to perform a largely untested surgery.
Each of these tasks consumed years of effort. Although Lindsay’s painstaking research and persistence won respect, persuading doctor after doctor to accept the difficult challenge his illness posed remained a constant struggle. Lindsay says he eventually realized that if he wanted empathy and support, he had to provide both in return.
“I had to show them I cared about the position I was putting them in,” Lindsay related. “I had to tell them that if they failed me, it would still not harm their self-concept as healer. [I had to tell them], ‘You can help me. It’s within your power.’”
3) Let technology pave the path
Clinicians know, of course, that they sometimes have an empathy deficit. In 2013, a Cleveland Clinic empathy video that quietly showed what we don’t see on the inside of the strangers who surround us in the hospital and clinic became a surprise viral hit, sparking tens of thousands of views and bringing tears to the eyes of many who viewed it. Two years later, MedStar Health’s “Please See Me” video emotionally captured the need for open and honest doctor-patient communication.
Still, overstressed providers too often experience compassion fatigue that interferes with their ability to empathetically listen to patients. One possible aid, voted “most patient-centered” at a health tech meeting held in concert with the SPM conference, comes from a company called PatientWisdom.
Founded by SPM member Gregory Makoul Ph.D., a researcher in doctor-patient communication (full disclosure: also a former colleague of mine at Northwestern University), PatientWisdom’s mobile platform lets patients tell their stories and then shares them in summary form with the entire care team via the electronic health record. Headings include, “This makes me happy,” “Health priorities/goals,” “My agenda,” “Biggest barriers to staying healthy” and “What I wish my doctor asked me.”
Said Makoul, “PatientWisdom has found the sweet spot between digital and personal.”
Separately, a group of patients working with the Society to Improve Diagnosis in Medicine is developing an online toolkit designed to communicate to doctors based on the logic they’ve learned in medical training – your story, but on their terms.
A leader in that effort, kidney cancer survivor and former SPM board member Peggy Zuckerman, is a realist. The toolkit, she says, “helps the patient tell his story…in a way that MIGHT get the doctor to hear your complete story.”
This post originally appeared on Pat Salber’s popular The Doctor Weighs In blog.