{"id":21122,"date":"2018-11-09T13:37:06","date_gmt":"2018-11-09T18:37:06","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=21122"},"modified":"2018-11-09T13:37:06","modified_gmt":"2018-11-09T18:37:06","slug":"getting-your-doctor-to-really-see-you","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2018\/11\/getting-your-doctor-to-really-see-you.html","title":{"rendered":"Getting Your Doctor to Really See You"},"content":{"rendered":"

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.<\/p>\n

By \u201cengage,\u201d I don\u2019t mean just the doctor not interrupting after 11 seconds. That\u2019s the average time a patient talks before the doctor interjects, said\u00a0a study published earlier this year<\/a>, down sharply from the \u201cleisurely\u201d 18-23 seconds patients on average spoke uninterrupted in studies from 1984 and 1999.<\/p>\n

This rapid interaction may be fine when you\u2019re trying to figure out if you have a broken ankle, but that perceived absence of empathy can\u00a0significantly harm your physical and mental wellbeing<\/a>\u00a0if your problems are more complex. At our Society for Participatory Medicine’s conference<\/a> in October (I\u2019m a member), three strategies stood out for patients to short-circuit being given short shrift.\u00a0[Editor’s note: each of these stories is from a member of our Society. To explore joining see our Join Us<\/a> page. – Dave]<\/em><\/p>\n

How to respond when your doctor interrupts<\/strong><\/h3>\n

1)\u00a0Individual flair can ignite conversation<\/em><\/h4>\n

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\u00a0wrote in a blog post for the Mayo Clinic<\/a>, 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.<\/p>\n

That feeling of isolation was reinforced by periodic, panicked visits to the emergency room.\u00a0\u201cThe first few visits all saw the same pattern \u00ad\u2013 I was a diagnosis, passed from hand-to-hand until discharge,\u201d\u00a0she wrote.<\/p>\n

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\u00a0\u201cgave me a talking point with my providers and a reputation in the Emergency Room,\u201d\u00a0she wrote.\u00a0\u201cWith every new diagnosis and treatment, the sneakers became louder.\u201d<\/p>\n

Shoelaces were soon replaced by scraps of cloth, and Kate splashed the shoes themselves with neon paint. Gradually, she emerged \u201cas the goofy kid with the weird sneakers,\u201d not just a \u201cpatient\u201d \u00ad\u00ad\u2013 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,\u00a0\u201cdoctors were willing to hear my whole story and not just a summary. When I had my shoes, I had my voice.\u201d<\/p>\n

Kate, often too sick in high school to attend classes, is now pursuing a master\u2019s degree at the University of Oxford.<\/p>\n

2)\u00a0Appeal to the physician as both scientist and healer<\/em><\/h4>\n

To paraphrase the famous\u00a0Michael Jordan commercial,<\/a>\u00a0what turned the tide wasn\u2019t just \u201cthe shoes.\u201d 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.<\/p>\n

\u201cData has power,\u201d\u00a0Kristina Sheridan<\/a>, Kate\u2019s mom, told the meeting. (Kate was in England.)\u00a0\u201cWe produced this chart from her voice.\u201d<\/p>\n

The strategy of explicitly appealing to the physician as both scientist and healer \u2013 to logic and emotion alike \u00ad\u00ad\u2013 is what saved Doug Lindsay\u2019s life.<\/p>\n

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.<\/p>\n

As\u00a0an article about his predicament<\/a>\u00a0put it,\u00a0\u201cSick, the guy who never had trouble finding an audience couldn\u2019t get doctors to listen to him.\u201d<\/p>\n

\u201cSick and terrified,\u201d 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,\u00a0a strong-voiced advocate<\/a>\u00a0striding back and forth in front of an audience, Lindsay recounted where he began and what changed.<\/p>\n

\u201cI wrote to doctors,\u201d\u00a0Lindsay said.\u00a0\u201cThey responded, \u2018Problems like what you say you have don\u2019t exist.\u2019 But I said, \u2018They could.\u2019\u201d<\/p>\n

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 \u00adto 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.<\/p>\n

Each of these tasks consumed years of effort. Although Lindsay\u2019s 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.<\/p>\n

\u201cI had to show them I cared about the position I was putting them in,\u201d\u00a0Lindsay related.\u00a0\u201cI had to tell them that if they failed me, it would still not harm their self-concept as healer.\u00a0[I had to tell them],\u00a0\u2018You can help me. It\u2019s within your power.\u2019\u201d<\/p>\n

3)\u00a0Let technology pave the path<\/em><\/h4>\n

Clinicians know, of course, that they sometimes have an empathy deficit. In 2013, a\u00a0Cleveland Clinic empathy video<\/a>\u00a0that quietly showed what we don\u2019t 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\u2019s\u00a0\u201cPlease See Me\u201d video<\/a>\u00a0emotionally captured the need for open and honest doctor-patient communication.<\/p>\n

Still, overstressed providers too often\u00a0experience compassion fatigue<\/a>\u00a0that interferes with their ability to empathetically listen to patients. One possible aid, voted \u201cmost patient-centered\u201d at a health tech meeting held in concert with the SPM conference, comes from a company called\u00a0PatientWisdom<\/a>.<\/p>\n

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\u2019s 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, \u201cThis makes me happy,\u201d \u201cHealth priorities\/goals,\u201d \u201cMy agenda,\u201d \u201cBiggest barriers to staying healthy\u201d and \u201cWhat I wish my doctor asked me.\u201d<\/p>\n

Said Makoul,\u00a0\u201cPatientWisdom has found the sweet spot between digital and personal.\u201d<\/p>\n

Separately, a group of patients working with the Society to Improve Diagnosis in Medicine is\u00a0developing an online toolkit<\/a>\u00a0designed to communicate to doctors based on the logic they\u2019ve learned in medical training \u2013 your story, but on their terms.<\/p>\n

A leader in that effort, kidney cancer survivor and former SPM board member Peggy Zuckerman, is a realist. The toolkit, she says,\u00a0\u201chelps the patient tell his story\u2026in a way that MIGHT get the doctor to hear your complete story.\u201d<\/p>\n

This post originally appeared on Pat Salber’s popular The Doctor Weighs In<\/a> blog.<\/em><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

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