Republished with permission from SarahBethRN.com.
Patient engagement is a trendy topic for healthcare providers – the latest spin terminology for “patient compliance” – as in how do I get patients to follow treatment protocols? Take better care of themselves? Especially now that payment for my services may be negatively affected by bad outcomes and poor patient satisfaction?
Sorry for the cynicism. It’s not usually my nature. But I’d like to offer up another theory: patient engagement is not the problem – lack of provider engagement is more likely the root cause of patient non-compliance (a demeaning expression that shows a total lack of empathy for the negative circumstances many patients deal with when seriously ill, but that’s another story for another time).
And here’s a news flash – you can’t engage patients if you don’t listen to them.
One of the most frustrating things I’ve encountered over the course of my illness is that doctors by and large lack listening skills–they may hear you, but they aren’t listening. People with chronic disease, especially rare disorders, have a lot of questions. Top of the list: will I ever be healthy again? All too often it’s: why won’t this doctor just LISTEN to me?
I first fell ill, I went to my PCP and numerous specialists trying to find the answer to “what is wrong with me?” Up until November 2011, I was a healthy 26 year old. I had always been energetic, played sports, traveled extensively, worked full time as a nurse taking care of stroke and then advanced heart failure patients. Then one morning – just like that – woke up in severe pain and with extreme fatigue. And haven’t been well since.
Others like me
It didn’t take long to learn what patients like me experience when trying to work through the maze of specialists, tests, insurers and others charged with the diagnosis, treatment and care of sick people. According to RareDisease.org, rare diseases affect 300 million people worldwide; the vast majority are women. A survey by the Autoimmune Diseases Association found that over 45 percent of AD patients were labeled chronic complainers in the earliest stages of their illness.
Thanks to the internet, many of them find information, support and help from active online communities of other patients, families and providers around the globe. They connect through stories and shared experiences.
Those stories have common themes – one of the most common is doctors don’t listen. Like me, most patients tell stories of being shuffled from specialist to specialist who rendered incomplete and often inaccurate diagnoses. In fact, according to another AARDA survey (American Autoimmune Related Diseases Association), it takes autoimmune disease sufferers up to 4.6 years and 5 doctors to be accurately diagnosed. Way, way too many are told their problems are in their head and sent off with a prescription for anti-depressants.
When you practice medicine in 10 minute sound bites, writing a script to manage symptoms rather than spending the time to listen and learn from the patient is the fastest way doctors can get you out of their offices.
Just visit some of the online patient support communities – patientslikeme.com or inspire.com, for example – and you’ll see what I mean.
Paging Dr. House
Trust me, when you have a hard-to-diagnose problem like mine, you need a Dr. House. In spite of his highly questionable bedside manner, he is always listening, knowing that unraveling the next level of complexity may yield that one clue that serves up the true diagnosis. What patients like me want is the irascible tenacity of Dr. Gregory House served up with the charm of Dr. Mehmet Oz.
I don’t want to leave you thinking that every doctor I’ve encountered sucks. They don’t. I am SO thankful for the outstanding physicians who are taking care of me today. But it was a journey – more like a safari – to hunt down and find the right medical team. However, I met plenty along the way who would benefit from a remedial course in listening.
Want to engage me, doctor? Pull up a chair.
