Thoughts on Being Your Own Best Medical Advocate… Part 1: Before Your Visit

Healthcare

2015 has been a year for addressing a multitude of health care concerns. By years end, I will have had five orthopedic surgeries, countless doctor’s appointments, a good run of physical therapy, as well as numerous massage and chiropractic appointments. I don’t recall a year of my life where I have done this much medical “stuff”, and as the year comes to a close, I am reflective of just what it means to “Be your own best Medical Advocate”. 

This will be the first of several blog posts on this topic. I have divided my thoughts into four logical sections:  1. Before Your Visit,  2. During Your Visit, 3. After Your Visit, and 4. Other Thoughts (including some on when you are NOT the patient, ie. advocating for another).  I am aware that everyone has their own thoughts and experiences related to this topic, and these blog posts reflect mostly my thoughts and experiences,  as well as some that my clients have offered. What’s mentioned barely scratches the surface of this huge topic, and doesn’t apply to every situation by any means. I hope you will find something helpful contained in these blogs, and I would welcome and encourage your thoughts and suggestions in the comments section of these posts. Medical Advocacy is a topic we all must tackle at some point and in some way in our lives.

BEFORE YOUR VISIT WITH A MEDICAL PRACTITIONER:

These ideas apply mostly when seeing a new practitioner or specialist, but also are useful anytime you are addressing a new medical concern with an established practitioner.

1. Make your Lists!     I am a rebellious list maker, coming from a family of obsessive list makers (especially my mother!) But there are times and places when lists can be very helpful, and with regard to your medical history and concerns are some of those times. There are three pertinent lists that come to mind to make before an important doctor’s visit:

  • Compile a complete list of your medical history.   Every medical practitioner’s office will ask you for some version of this, and it can be very helpful to compile it into a document to keep with you for each and every visit. This document should include names and numbers of previous practitioners seen for similar conditions, past and current medications, surgeries with dates, pertinent injuries and hospitalizations, your past and present major medical issues, and notable family medical history. I have not gotten it together yet to do this list, and this was a suggestion from my sister that I really like, and I am asking myself why haven’t I done this before??  I actually dread going to a new doctor because of the challenging task of trying to remember everything.  I have reinvented the wheel SO MANY times on this, and to have it all in one place would save time and energy.. Also, I can see that having this all together ahead of time could alleviate some of the stress associated with having to relive it each time I re-write it. Sometimes I don’t feel like thinking about how many surgeries I have had or how much pain I have…I just want to be forward moving in my approach. If all the little details were previously written up and documented, then I could more accurately focus on the visit ahead and not dwell on the past.
  • Make a list of your immediate concerns.   This is really important, and I make this list before most every doctor’s visit. I always ask myself, “What are my three most immediate concerns that I want addressed today”?  It’s not always three, but I have found three to be a reasonable number. And experience has taught  me to bring up the most important issue first. That way, I know it will get addressed.   I usually go in with a list of my top three priorities, and a list of questions related to them. Sometimes I can tell there will not be time to address them all and I have to readjust. But I have found that I will usually get my questions answered if I think of them before hand, and put them out there directly. I have learned to avoid bringing up difficult issues until right before I leave, almost as an afterthought. Doing this can bring dismissal from the doctor, or require an extra visit down the road. Sometimes it takes courage to ask all of your questions up front,  but it is always worth it.

A recent example exemplifies this point. After a somewhat unsuccessful ACL and Medial and Lateral Menisci repair last February, I chose to see a different doctor for a second opinion. The most pressing question I had for this physician, in retrospect and after discussing the status of my knee and options was “Would I benefit MOST from a knee replacement at this time?”  After our second visit, I still hadn’t asked that question directly, as I was fearful about his answer and the question hadn’t yet fully formulated in my conscious brain. I did ask questions as to what else could be done, would that alleviate my pain, what would he recommend…but never that question “from what would I benefit MOST?” Instead, I (somewhat hastily, in retrospect) scheduled another arthroscopic surgery, my fourth on that knee, to “clean it up”. Then, after reviewing the most recent MRI results, taking stock of what I know about my knee and where the pain is coming from, and realizing the state of arthritis present, I wondered if I had made the right move. Maybe, I thought, I should just get the knee replaced now, even though I would have to do it again in 15 or 20 years. But I didn’t ask the question when I was in the office, and instead called the office after the fact to try to discuss it with the doctor. That wasn’t a good move. I found it difficult to express my concerns about the upcoming arthroscopic surgery, my questions as to if it was the best solution, to the nurse, and I am pretty sure she didn’t get what I was asking or why. She said they were totally different procedures, and I couldn’t just swap one for the other. I assured her I was aware of that, but just wanted to make sure I was making the right move in going ahead with the arthroscopy. It proved impossible to get in to see the doctor before the surgery, and he didn’t call me back. I proceeded with arthroscopy last Wednesday, and it was a more complicated procedure than I or the doctor had anticipated. The doctor acknowledged that I was in fact much closer to knee replacement than he had thought. While I am glad in many ways that I didn’t do the total knee just yet, I would have felt better had I at least asked the question in the presence of the doctor. So, back to the importance of the prioritized list of questions…If that had been on there, I would have asked, and avoided feeling misunderstood and a bit “overly dramatic” for considering the total knee as an option.

  • Make a list of your presenting symptoms.      Include what they are, when they started, and other things that were going on at the same time that may be contributing factors. This can be important to help your doctor or practitioner see how the dots are connected. A word of caution here: It is important to keep your focus on those symptoms and events that seem related. It can be overwhelming to have a patient that tells you EVERYTHING that is going on. Sometimes I see this with massage clients. They want to make sure I have the whole picture, so they include all the details. I don’t usually mind this, as seeing the client’s big picture is helpful for enhancing the effectiveness of the massage. I also think a skilled medical practitioner will bring things back to the topic at hand and weed out what’s relevant and what’s not. But busy physicians often don’t have time to hear it all, and it’s more effective to LIST the pertinent symptoms and facts related to,  then to give a long and rambling narrative.

2. Ask yourself: “What is my PRIMARY OBJECTIVE for this visit?”    I have found that if I can keep that in my mind throughout any interaction with a medical practitioner, I usually get what I came for. I will give you another (very) recent example. After my arthroscopic knee surgery last Wednesday, I returned from the clinic in Issaquah with almost no pain and walking just fine. That lasted for just over 24 hours, and then I started noticing an increase in pain and swelling. This went on for Thursday afternoon and evening, and by Thursday night when I tried to go to bed I was in intense pain, couldn’t walk without aid, and pain pills weren’t touching it. Throughout Thursday night, the pain continued to worsen, such that I could not move my leg at all without assistance. The entire joint capsule felt painful beyond anything I had yet experienced in my previous knee surgeries, and I couldn’t make sense of it. After not sleeping at all Thursday night and not being able to bear any weight Friday morning or have anybody or anything so much as grace my knee without intense pain, I felt sure something was going on. I was also nauseous, lightheaded, and nearly passed out trying to make coffee. So off to the ER I went. I asked myself before I went, “what do I hope to accomplish by this visit?”  The answer was clear to me despite my pain and lack of sleep. I wanted to make sure I didn’t have a post-operative infection, which can be serious. I was looking for an explanation, or at least reassurance, that the pain wasn’t an infection in the joint.

While we were at the ER waiting for blood results, another man was checked in right next door. The ONLY thing between us and him was a curtain. There was absolutely no privacy, which I am always amazed at. I have seen this before, when receiving a transfusion in a room with many other patients, or even getting worked up for surgery. There is often NO separation of patients except space and a visual barrier…all conversations and interactions can be heard at full audible volume. This was no exception. The man checked into the next space was probably homeless, with a headache. He had no doubt been in the ER numerous times for the same problem, as evidenced by the conversations between him and the Doctor and nurses about his recent visits. This man desperately wanted something…he kept asking for tests that had already been ordered and had come back normal, or to talk to yet another doctor or nurse who would tell him something different. He must have asked 50 questions in the short time he was there, the same ones over and over. I felt badly for him, as well as for the doctor and nurses who were trying so hard to be patient with him but finally had to threaten security to escort him out if he wouldn’t go of his own free will. All the while I kept thinking to myself, what does that man hope to accomplish here? Is it a respite from the streets and December temperatures? Is it for someone to pay attention to him? Is it reassurance for the hundredth time that he isn’t dying of a brain bleed? He didn’t want or ask for drugs. He just kept asking for tests, and to see someone else who would order those tests when the ER doc declined to do so.  I realize that he may or may not have been in full charge of all of his faculties, and this likely affected his visit all around. But I also kept noticing the difference in how I was treated with my specific complaint and requests, vs. how he was treated with his vague complaint and requests for tests. In the end, I got what I came for (there was, thankfully,  no sign of infection, and I was sent home with a knee immobilizer…mostly, no doubt, so the ER doc could feel like he did something), but the homeless man got nothing. And my guess is, he will probably be back, trying again to find the answer to some question that only he knows.

3. Do some research on who you are seeing and what you are being seen for.      It’s always a good plan to ask around for a referral for a medical practitioner before you even commit to a visit. Word of mouth, I believe, is still the very best means of getting referrals. After you select your provider, you may want to look into his or her background, training, and areas of expertise. I also enjoy reading the “human” aspects of the provider…what they like to do in their “spare” time. With so much information available on the internet, it is easy to find such on almost every provider you may be interested in seeing. And while you are on the internet, it can be useful to find out something about what you are seeking medical attention for. How people approach this is as varied and personable as the issues that drive people into doctor’s offices. Everybody’s approach to this is different. For my own purpose, I tend to research a bit, but mostly stay open to what the doctor or practitioner may have to share with me on the topic of concern. Others spend days, weeks, and even years educating themselves, believing that to be most helpful in the facilitation of their medical care. I would say, at minimum, do some research and educate yourself a bit…how much more is totally up to individual preference.

Now you are armed and ready for that first visit. The next blog post will look at what you can do while you are at the appointment to maximize your experience.

 

 

 

 

 

Written by

Kathie Tupper is a Licensed Massage Therapist and the owner of this website.