Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Monday, October 02, 2006

The Relationship I Pay for.....My Doctor and Me!

What do you expect from your doctor? How do you expect that relationship to intertwine with and affect your diabetes? What do you expect from your doctor's nurses, diabetes educators, and nutritionists? Do you have a clear idea of what you expect? Do THEY have a clear idea of your expectations? How do you communicate your needs to your endocrine team? How do they communicate their needs to you? Overall, are you getting what you are PAYING FOR?

I expect my doctor and her team to help me reach my goals as they pertain to diabetes. I expect to have open lines of communication, as needed, with their entire team. I expect to deal with one person in diabetes education CONSISTENTLY. How do I achieve this? Is it even POSSIBLE?

Sometimes I feel like it isn't. I've been my own personal diabetes care manager for over fifteen years now, and sometimes, it just seems like those lines of communication get crossed. First off, when I started at this, it didn't feel like there were ANY real lines of communication at all. I went into the doctor, they told me my a1c results from 3 months ago, they reviewed what sugars I had managed to jot down, sent me off for blood work, and that was that. I felt as though they had done me a favor to honor me with their assistance in helping me manage my diabetes. I did not view their care as a service I was paying for. I did not know and understand that as a patient with a chronic condition, I really am my one and only patient advocate and only I can ensure that I get my questions concerning my condition answered adequately. Then again, at that time I was only 13, and boy did I have a lot to learn!

I believe that the first step towards getting what you need from your endocrine team is clearly understanding what it is you want and need from them yourself. How do you do that? I made a list. I wrote down everything I wanted, needed, and expected from my endocrine team. What sort of things were on that list? I want reasonable flexibility with appointments. Any working human would want this! I wanted an actual TEAM of medical folk to work on my case. That means I want an endocrinologist, a diabetes educator who works specifically with that doctor, a general nurse that works specifically with my doctor, and a nutritionist who works specifically with that doctor. I wanted all of these people appointed to my care, and I wanted their NAMES and their PHONE NUMBERS. If possible, I wanted their EMAIL ADDRESSES. I wanted to have clear goals written up that were designed to help me overcome each of my difficulties with my diabetes. I wanted to work with ONE doctor, ONE nurse, ONE nutritionist, and ONE diabetes educator. If she is not available, unless I'm dying, I will WAIT until she IS available. I cannot STAND working with three different people in three different weeks. How can they effectively help me and the complexity of a pump, basals, exercise, etc...if I work with a different person weekly?

Once I clearly understood what I wanted, I needed to find a way to communicate with my endocrine team. I took that list that I made, and I took it one step further. I outlined very clearly (almost like a job description) exactly what I expected from each one of them. I then took the time, either on the phone or in the doctor's office, to talk to each person on my team to find out what I would need to do to achieve those expectations. I think it is CRITICAL to tell your team what you need from them, because if you don't, they are on cookie cutter overdrive, and what they give to ten other people that day who all have completely different quirks in their care and diabetes, they will give to you. It meets the in and out standards of today's health care, but does it really provide you with what you need? This also opens up the doors of communication. I know that sounds cliche, but if you tell your doctor/CDE/nurse your expectations of them and you don't know how to best work with them to meet those expectations, you really aren't working as a team. They are very busy, you are very busy. Pull all of your resources together and find the best way to get things done. When I sat down with my CDE recently, I discussed how FRUSTRATED I was that I always had to work with a different CDE at the office and how that doesn't meet my needs. In this conversation we worked out how to communicate to the entire office how I deal only with her, but something else came out. She told me that the charts and logs I kept made it very hard for her to look at them and see trends. We talked about a few different ways that I could present information to her, and I incorporated that into what I currently do. Sitting down with her to discuss my needs in my treatment allowed her to tell me what she needed from me. We both benefitted and left knowing that we were making the other person's job easier AND we were improving my care.

The next part of this is making sure I get my questions answered when I actually go and see the doctor! I visit my doctor once every 12 weeks. Inbetween my visits, I don't talk to her. She doesn't even look at my sugars! My CDE is actually the person who reviews my sugars and helps suggest changes. There are some questions though, that my CDE just can't answer. For these questions I make a list (another list I know!). I carry this list around with me in my purse (I know about all of your diabetic bags, EVERYONE has some kind of purse, even the boys, but they call them backpacks I think!), and whenever I think of something I jot it down before I forget. In the nights before I go into the doctor, I write up a synopsis of my care in the past 12 weeks, information on basals and boluses, and how they work with the symlin and with exercise, any illnesses I've had in the previous 12 weeks, any dietary changes, any new diagnoses, and any new meds (among anything else I can think of.) At the end of this I list all of my questions. I print this out for myself, I print one for my doctor, and then I FAX one to my doctor a few days before my appointment. Sound crazy? I don't think so! I want my doctor to be thinking about me before I come in. I want my doctor to review this and be READY for me, so that we can spend the time I have at her clinic talking about the problems I have and possible solutions, rather than her scrambling to look over my sugars while she is sitting next to me.

The last thing I do to address reaching my goals in diabetes is actually writing down what my goals are. I think, that just like any goal, this needs to be done. I don't make myself hard diabetes goals, just little ones I feel like I can achieve with the help of my doctor and her team. I may make a nutrition goal combined with a basal/bolus goal, or even an a1c goal. My last set of goals were:
1. Eliminate most of my daytime and evening lows.
2. Test afternoon and evening basals to help control evening highs.
I actually wrote up these goals with my doctor and then after we agreed that those were appropriate goals that addressed the most pressing issues I was having, I faxed one to my nutritionist and one to my CDE. I even provided one to my doctor.

Even with all of this extra time put into organizing my care with my endocrine team, there are still times when I am not happy with my care. At this point, I have decided to try a new endocrine team, because I feel as though my current endocrinologist is not going to help me realize my goal to have a CGMS system. I believe that we NEED to be assertive in helping to realize our own care goals. If you suspect you aren't getting what you need from your team, then I guarantee you AREN'T. Never forget that this is a relationship, meaning that information is going from you to your doctor and back to you. Your doctor's help means NOTHING if it does not take into account the information you provide to them, or if they do not have an effective way to communicate with you. Finding a way to work with your team that helps them and helps you is a hard thing! I believe that health care today is not treated as a consumer industry, but it needs to be! If you aren't getting what you need after consistently attempting to increase communication and get your needs addressed, GO TO A DIFFERENT DOCTOR! FIND A DIFFERENT TEAM! We only get one life to get the best care we can, don't lose your one chance!

2 comments:

Minnesota Nice said...

Oof-dah.
The care and time that you take in preparing for your appointments is admirable and I'd think most docs would love to have patients as detailed as you -seems like it'd make their job a whole lot easier.
I can't wait to hear about your experience at the IDC. I have access to them and if it's favorable, I may also give them a try.

MileMasterSarah said...

Really, I shouldn't need to do all the organization I do. Why don't clinics that help to manage chronic conditions have patient care managers to coordinate all this crap? Unless I tell my doctors, they have no IDEA what else is going on with my health with any other doctors. They also have NO IDEA what is going on WITHIN THEIR CLINIC with their nurses, dieticians, and CDE's. You basically have to FORCE cooperation. It is extremely frustrating. I don't think they really like me much, I think I bug the heck out of them.