What to Do When Treatment Teams Disagree

When you have a complex chronic illness you oftentimes have to see multiple different specialists that form what we know as a treatment team. In an ideal world these providers work together to create a treatment plan with a goal/similar goals in mind. Sometimes a treatment team is made up of only a couple different providers, while other times it is made up of multiple specialists in addition to their PAs and NPs, which are seen between appointments when more frequent follow-ups are needed.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

A treatment team is an amazing thing, but at the same time it can become one of the most frustrating things about having a complex chronic illness. It is all good until there is one provider that seems to not be in line with the rest of the team and seems to always be doing the polar opposite. At times it can leave a patient questioning if the provider has even bothered reading notes from previous visits, or if they question the validity of everything.

This can lead to frustration, confusion, anger and feelings of dismissal. For some patients, like myself, this one provider can be what “triggers” difficulty in compliance with the treatment team and failure to follow-up with specialists. Like myself, it can lead to only regularly seeing one of the providers on the team who you trust the most, or avoidance of follow-up appointments all together.

It is a very difficult situation to handle and one that unfortunately takes practice to learn to navigate. One thing I have learned to do is empower my voice. When this arises I have learned to speak up and ask questions. It is important to ask for clarification and to voice where the confusion is coming from. This isn’t always with that one provider who seems to not be on the same track as everyone else, but can be with one you feel the most comfortable speaking with. For me this is my primary. I have learned to point out the messages and treatment goals I am getting from the others and the treatment goal/recommendations I am hearing from the provider that seem to be very different. Then I ask if my primary could please help me understand what the goals are, for understanding of why the one provider may be looking at something different.

I have learned by doing this it encourages my team to make sure they are communicating with everyone. I have learned that this usually causes a domino effect of, let’s review notes and ask each other questions. A lot of times the providers who all have a similar goal aren’t aware of the one who has a very off goal. Speaking up about it gives the other providers a chance to advocate for the patient. It lets them know there is miscommunication happening somewhere and the effects of that miscommunication have reached the patient/are affecting the patient. It also lets them know that the patient may need additional support in order to remain compliant with the treatment plan, instead of getting lost in the mix of “unaligned” goals.

My Experience:

For me this experience involved a primary care physician (internal medicine), GI doctor, the GI doctor’s physician’s assistant (PA), and registered dietitian (RD). The situation revolves around my feeding tube, severe clinical malnutrition, chronic dehydration, esophageal paralysis, aspiration, post infectious IBS, Ehlers-Danlos syndrome, spinal cord compression and recent weight loss of 15 percent of my body weight in a very short amount of time.

The GI doctor, RD and PCP were all on the same page. They agreed that further testing was not needed due to solid evidence supporting my diagnosis/complaints and that the long-term goal was to manage my nutrition through my tube without any plan for attempting to transition back to any sort of an oral meal plan. The goal has been to prevent worsening/treat the severe malnutrition with hopes of restoring nutritional status and weight.

The PA, on the other hand, has been determined from day one to get the tube out and have full oral intake. The PA ordered multiple tests which confirmed the diagnosis and showed worsening of the condition, yet place orders to immediately transition to an oral meal plan and discontinue all nausea medications that the other team members had just adjusted/started. This one provider seems to only focus on one of the diagnosis (delayed gastric emptying), meanwhile ignoring the others, which are more of a problem and the reason for the tube.

One can only imagine the confusion going through my head when I received this decision from the PA, only days after my PCP and RD placed me on strict NPO orders due to aspirating on solid food/liquids. It left me not only feeling confused, but frustrated and dismissed. Was this the PA’s way of telling me that my condition is not real and just in my head? I questioned if my chart and notes from other providers had even been reviewed. It made me wonder if she has even communicated with my GI doc, who she directly works under.

I also had a wave of defeat, helplessness and hopelessness. This one provider was literally wanting me to undo everything the others have worked on figuring out and finally getting a treatment plan for over the past eight years. She wants me to go back to an oral meal plan that left me with aspiration pneumonia, nausea, vomiting and inability to maintain my weight. Then to add insult to injury wanted to stop the medication to manage the nausea and not place me back on the motility medications that would even make it remotely possible, even though the test she ordered showed my delayed emptying was significantly worse. She wants me on a diet that is contraindicated with my esophageal condition.

So, what was my gut reaction: I immediately thought, well that’s it I’m done seeing GI. I’m giving up on them again. It took 10 years to find a GI who was willing and able to treat me without referring me onto the next one due to the complexity of my case and lack of expertise in my motility issues. I immediately thought “I can’t go through this again, I’m better off on my own.” It definitely triggered a massive trauma response. Medical PTSD is a very real thing, especially if you live with an extremely rare condition like I do.

I made myself sit with these feeling for a while, then I forced myself to think about what other responses I “could” have to it. I decided on emailing the RD, since the RD seems to be the one who the other providers specifically say they agree with and to follow the directions of. I emailed her, explained my understanding of the goals they have set for me, explained this new goal the PA had. I expressed my confusion and asked for clarification on what the goals and treatment plan is. I asked if the PA’s goal is something we are working towards if she could explain how that process would work for me. In addition to contacting the RD for clarification, I also messaged the PA back and asked what the plans were to manage my nausea if discontinuing those medications, and I expressed that I felt the swallowing was the issue that impacted me the most and what her recommendations were for getting around that barrier. My hope is that maybe my response will get the PA to “realize” that there are other issues as well. I am hoping the RD will reach out to the GI doc and the PA for clarification and to reiterate what her goals are and what she feels is most important to address first.

If this fails, then my plan is to contact my GI doctor directly, since the PA is his PA. A PA is supposed to work under direct supervision of the doctor and is expected to communicate with the doctor. Unfortunately from past experiences I have learned that some PA’s will act “alone” and skip the communication step when they feel confident in their decisions. In addition to this, I may even reach out to my PCP and express my concern, since the role of the PCP is to be the glue who holds the treatment team together and accountable. She is the one I see most often and who is involved all around with all of my care (GI and non-GI).

This experience has taught me that I must encourage the team to communicate if it begins to appear that not every team member is on the same page, especially if one member appears to be undoing the work of all the other members. I can’t let myself get back to a place where I avoid medical care until I am at a place where I end up in the hospital due to medical instability. Once you are in a place where you can’t trust your treatment team or can’t comply due to confusion, it is a very hard place to get out of. That is why I have chosen to face my fears of rejection and speak up. It is never wrong to ask for clarification and express your understanding of the situation!