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!

Advocating for yourself with complex, chronic illness PART 2 - Establishing a foundation for your healthcare

The first step in advocating for yourself is to establish a solid relationship with a primary care physician.  Internal Medicine physicians are specialists in adult healthcare so it is more beneficial to build your healthcare team with an Internal Medicine doctor as your co-pilot.  It is the responsibility of your primary care physician to coordinate your care with the input from doctors that specialize in other areas such as rheumatology, ophthalmology, gastroenterology, neurology, etc.  Doctors that specialize in body parts see patients as body parts and that isn't beneficial when trying to diagnose a complex illness that includes all your body parts.  Your primary care doctor should treat you with respect, listen to your concerns uninterrupted, and develop a plan of care that is focused on making an accurate diagnosis, providing you with treatment options, and working with you to find solutions to ongoing and new problems.  Your primary care doctor should be vigilant in monitoring you for a possible missed diagnosis.  There are many connective tissue diseases, autoimmune disorders, and neurological diseases that are very difficult to diagnose.  It can take years to make a definitive diagnosis.  These illnesses have similar symptoms to CFS and fibromyalgia.

Another critical component of developing a solid foundation for your care is an office staff that works well together, is responsive to what you need, such as a prescription refill, and doesn't serve as a barrier between you and your doctor.  I had a wonderful rheumatologist that was a partner in my care and we worked so well together.  But I always had great difficulty getting my prescriptions renewed due to the office staff not following through.  I attempted to work with this and I even talked with the doctor about the difficulty I was having.  One day I realized that I was running low on Ropinirol for RLS so my pharmacy faxed the office to get the refill okayed.  Two days later I attempted to pick up the prescription, but there had been no reply from the doctor's office.  So the pharmacy sent another request by fax, but when I returned to the pharmacy there was still no reply.  The pharmacy gave me extra Ropinirol to hold me over until they heard back from the doctor's office.  I called the doctor's office and the staff member told me I needed to be seen by the doctor before the medication could be refilled.  I attempted to explain why I needed the medication, but the staff member refused to give the doctor the message.  I made an appointment for the following week, which was the earliest appointment I could get.  I considered driving the 30 miles to the office to talk with the doctor since the staff were acting as a barrier, but the doctor wasn't in on Friday.  The pharmacy refused to give me any more medication until I saw the doctor.  I had to go without taking Ropinirol for 4 days.  By the fourth day I was unable to remain still for longer than 1 minute at a time and therefore I was up and moving for 27 hours straight before I could get to the doctor's office just to get a prescription filled.  The doctor was dismayed to find out that her staff had been a barrier in my care.  I made a decision to change doctors even though this doctor was a wonderful co-pilot.  If the office staff are a barrier it doesn't matter how good the doctor is.

An important concept for all of us to embrace is that we are healthcare consumers.  We hire doctors to give us an opinion -- essentially, they are our employees.  If the doctor's performance is poor we can fire them just as quickly as we hired them.  The doctor we choose to see is accountable to us and our expectations.  Take the time to sit down and write a list of expectations that you have for the doctor you hire to participate in your care.  When you see your doctor, present that list of expectations so that your doctor knows exactly what you want from him/her.  If your doctor doesn't meet those expectations, communicate that immediately to your doctor.  When you are disappointed in your doctor's performance let him or her know that.  Our power as healthcare consumers is the feedback we give our doctors and we share with one another.  I make sure I take the time to write a review of my doctor's performance on the various Web sites that provide customer feedback tools, such as Health Grades.  I check these Web sites out before I go to a new doctor.  For example, the reviews that were posted about the neurologist I have been referred to were not favorable so I discussed this with my primary doctor.  I told my primary doctor that I was not interested in seeing a doctor that has a bad attitude and I asked my primary doctor what his experience had been with other patients that he had referred to this neurologist.  It is important to have these conversations with doctors so they are reminded of our expectations.  Some people only write feedback when they are angry or when they are very happy, so take that into account when reading these reviews.  It is important for us to communicate a doctor's performance whether it is good, bad or indifferent.  Our ability to share our opinions with each other about the doctors we see ultimately improves the care that we receive.  I always inform the doctors I see that I read reviews about their performance on the Internet.

In preparation for an appointment with your doctor, make a list of concerns you want to discuss.  Doctors are busy and can only address 2 or 3 issues per visit.  Before your appointment review your list and select the most important issues you need to discuss.  You can always make your doctor aware of additional issues you have and then decide how to get those issue addressed, which may mean making another appointment.  If you go to your appointment prepared and organized you can accomplish a lot in a 15 minute appointment.  When the doctor walks into the exam room I communicate the number of concerns I have to the doctor and then I start with the most important concern.  I am aware of how much time I have and work through all my concerns within the time that is available.  It is difficult to address the many issues that patients have when a complex illness is involved.  If time runs out and there is another concern that you have, this can always be discussed with the doctor's nurse or nursing assistant and then they can get back to you with an answer.

When a doctor makes a rude statement to you, becomes annoyed when you want to talk about a new symptom or a persistent symptom, or oversimplifies your diagnosis, it is a sign that you have reached the end of that doctor's knowledge and it can be an exceedingly short trip!  A competent doctor that cares about patients has the ability to admit when he/she isn't sure about the diagnosis and avoids labeling or stereotyping a patient.  I have had a number of physicians write bogus comments in my medical record.  That's a lot of power!  Most recently I saw a neurologist for my peripheral neuropathy and he documented in my medical record that I'm "just depressed" and I have "skin sensations".  I am now in the process of challenging that doctor and having my medical record amended.  Remember that you own your medical record and you may request to review your medical record at any time.  If you do not agree with what is documented in your medical record you can challenge that documentation and request that the documentation be changed.  The content of your medical record has many implications for you both legally and medically.  This documentation is critical if you need to apply for disability and may have implications for a health or life insurance policy that you wish to purchase.  Your medical record is a legal document that follows you throughout your life and the tendency of anyone reading your medical record is to believe whatever a doctor writes.  Doctors have a great deal of power and that power is recklessly abused at times by doctors.  We must exercise the power we have as healthcare consumers and advocate for ourselves to ensure that our healthcare outcomes are favorable for us.

The next topic in this series that I will be discussing is how to speak the same language as your doctor and healthcare team.  Meanwhile, take good care and be well!  Many Easter blessings to you . . .