Advocating for yourself with complex, chronic illness PART 3 - Sharing a common language

In healthcare the number one reason that an error is made is a breakdown in communication.  My personal experience with the English language has led me to the conclusion that the English language was not designed for effective communication.  In reality communication is a complex process and each person has their own unique style, but in healthcare, communication is critical because your life and health depends on accurate communication among an entire team.  Healthcare improvement efforts have focused on standardizing healthcare team member communication.  But patients and families have rarely been included in these improvement efforts.  Since we are the pilots of our healthcare team it is key that we have the communication skills to direct that team.  Effective, consistent communication begins with speaking the same language.  Healthcare has its own language that is confusing even among the healthcare professionals that speak the language.  There are multiple terms that have the same meaning and confusing abbreviations are used, which can easily be misconstrued.  In addition, doctors are constantly multitasking and team communications are frequently cut short to save time.  In essence healthcare team members are expected to be able to read a doctor's mind and that spills over to the rest of the team.  Have you ever seen a symphony orchestra play?  The conductor leads a large team of musicians that are reading music on the page -- a common language and the result is beautiful and inspiring.  Those musicians received years of training to be able to read that music accurately and even then a conductor still leads that team to keep all those members in sync.  Imagine if that orchestra was playing without the music or each musician was playing a different song.  That would result in a cacophony of sound.  The result would be a disaster.  The same is true in healthcare.  Our ability to accurately communicate depends on a common understanding of the definitions, which results in everyone "playing the same song".  For example, one doctor I had "hired" to copilot with me stated that it was important that we partner in my care.  I was in full agreement with that concept.  Being an Integrative Medicine doctor she prescribed accupuncture, an elimination diet, meditation, biofeedback and other alternative treatments.  I explained to the doctor that I have fibromyalgia and I needed help managing my symptoms.  She agreed that she would be working with me to provide treatment for all my symptoms.  I saw this doctor for 9 months and it became more and more clear with each office visit that there was a disconnect.  Despite my pain ratings of 8 out of 10 the doctor never addressed my pain.  The doctor didn't want to know how the elimination diet was working or if any of the other treatment modalities had improved my symptoms.  The disconnect appeared to be related to a lack of a common definition of partnering.  The doctor's definition was that partnering meant I would be on my own regarding the diet, accupuncture, biofeedback, etc. and the doctor would be managing hormone replacement.  My definition of partnering was that the doctor and I would be working together as a team to determine if I have fibromyalgia, to alleviate pain and other symptoms, and to discuss the effectiveness of the prescribed treatment modalities (accupuncture, biofeedback, elimination diet, etc.).  The result was disasterous.  I ultimately had to find another doctor and my care and treatment had been delayed.  In addition, I had not received any help with pain management and I had spent a great deal of money on treatments that weren't being directed and evaluated by a doctor.  If the doctor and I had initially discussed the definition of partnering it would have been evident that this doctor was not going to be providing the care that I needed.  When definitions are not agreed upon assumptions are made, which lead to misunderstandings, delays in care and errors in care.

If your doctor isn't addressing your healthcare concerns it is a sign you are not speaking the same language.  You may need to backtrack, and review and discuss your treatment goals to clarify any miscommunication.  Many times patients fail to communicate in a direct way with their doctor or don't share their thoughts, which results in incomplete communication.  Be sure to share all your concerns with your doctor, including how you feel about the care you are receiving.  In an effort to improve healthcare team communications, the SBAR model of communications was adopted by healthcare teams across the U.S.  The acronym SBAR represents Situation - Background - Assessment - Recommendation.  Using the SBAR communication model has made healthcare team communication more effective and efficient, which has reduce miscommunication among team members and reduced the number of possible errors.  But the disconnect in this model has been the lack of patient involvement.  As the pilot of the team, optimal communication among the patient and the healthcare team would include educating patients on the best way to communicate with their healthcare providers.

When talking with any member of your healthcare team, begin by describing your chief complaint, including a brief description of the problem or Situation.  This will set the stage for effective and accurate communication by putting everyone involved "on the same page".  Next you need to describe more detail about the problem or Situation, which provides the Background information.  Share your Assessment of the Situation with your healthcare team so they know what you are thinking about your primary problem.  The last step is to share your own Recommendation for this problem.  Using this model will put your entire healthcare in sync with what you are thinking and your personal healthcare goals related to the problem or chief complaint.  For example, I recently saw a neurologist for the first time.  I started by briefly describing my Situation - I have been sick for 20 years and doctors have not been able to definitively identify an accurate diagnosis.  Next I described the Background, which is the data piece of this communication model - I had prepared a chronicled timeline of symptom onset which I shared, briefly described some of the diagnoses I had received from doctors, diagnostics that had been done with the results, and described the most current symptoms that I am experiencing.  I then moved to my Assessment of the problem, which included my thoughts on a possible neuromuscular disease and the fact that I'm not "just depressed".  At this point the doctor moved directly to the Recommendation phase of this communication model.  The neurologist stated that she needs to accurately document my illness, create a baseline of information by ordering diagnostic tests, and then refer me to a neuromuscular specialist to definitively diagnose my illness in the case that she was unable to come to a definitive diagnosis.  The communication model worked like a charm.  The doctor automatically recognized the structure of this model and moved from asking more questions to add to Background data, to her Assessment about a possible diagnosis, and then to her Recommendation.  If any of the communication between you and your doctor seems confusing, stop the communication and ask your doctor to clarify what you think you heard.  Whenever you have a doubt about the communication accuracy it is critical to stop the communication process.  This doubt is what keeps you safer and prevents medical errors from occurring.  Always ask for clarification.

Prior to your doctor's visit sit down and write out your thoughts about your healthcare problem using the SBAR communication model.  It takes some practice to become familiar using this model, but the result is sharing a common language using a common communication model and developing a common understanding.  Blessings to you as you effectively, accurately and safely navigate the complex world of healthcare!