By Patricia Salber
The good folks at Inspire (an online community of 450,000 patients and caregivers) sent me a link to their latest publication, Experts by Experience, a compilation patients’ stories about their illnesses and their care. (The stories were first published on Stanford University School of Medicine’s Scope medical blog.) This publication is not about treatments, rather it focuses on patients’ experiences in the health care setting, particularly focusing on communication (or lack thereof) with their doctors.
The patients’ stories offer clinician readers an opportunity to learn what it is like to be on the other side of the stethoscope – and it isn’t always pretty. Some of the stories made me shudder as I recalled being a perpetrator of some of the bad behaviors described in the document.
Patient engagement and patient experience were not really part of the conversation when I was in practice. It was all about making the diagnosis and prescribing the treatment. These were the days of “The Belly Pain in Bed 4” and “The Train Wreck in the Unit.” I rarely knew much about my patients – but then I was an emergency physician – that’s my excuse anyway.
I vividly recall one man, a “Frequent Flier” that I had treated for complications of diabetes during his many visits to my ER. I only saw him gowned and lying on a gurney. One evening, he came into the department with his mother. He was in street clothes – the first time I had seen him both vertical and dressed. I was shocked to learn that he was really, really short and that he was a well-respected gem collector. I had never really engaged with him until that night. To me he was the “Diabetic” in 2A.” I can only imagine what his experience of me was – “That Doctor Who Doesn’t Listen” or “That Woman Who Doesn’t Care.” I will never know.
But I digress. These patients’ stories are much more recent than mine, but still they contain examples of communication failures:
- A newly diagnosed cancer patient was told: “We have treatments that can help you survive for about two years”
- A doc after finding a thyroid nodule told the patient, “A lot of women have it and its very common. You just need to have a neck ultrasound and I’ll see you in three weeks” – leaving the anxious patient to do Internet searches and seek out other doctors on her own, one of whom did a biopsy in the office and diagnosed thyroid cancer.
But what I love about this compilation is that there are also stories about doctors doing it right:
- A young woman with Ehlers-Danlos Syndrome (EDS), a rare connective tissue disease, became an empowered patient giving her doctor summaries of her symptoms, information about EDS from the Ehlers-Danlos National Foundation, NIH and medical journals. Instead of being uptight about a patient educating her, this doctor said, “I want to say thank you for teaching me all you have about EDS…it has made me look at the other EDS patients I have differently… I just want to say thank you.” The amazed patient thanked her back and, in her words, “we hugged it out.” (Wow!)
- The patient who was told he only had two years to live talked to another doctor who told him instead, “Yes, you can beat this. We are treating to cure!” (Which of these approaches do you think helped the patient the most?)
Whether you are a doctor, a patient, a family member, or a caregiver I stongly recommend that you take a few minutes to read these stories. And, then read them again. These patients are really experts by experience and we can all learn from them.