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Newsletters: Two Experts Are Better Than One
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Two Experts Are Better Than One:

Sharing Information with Your Physician Can Lead to Better Treatment

Fredi Cooper, TPN Consumer

The article below describes one consumer’s experience in learning how to work with her physician. It is yet another example of how well informed patients can lead healthier, happier lives. The Oley Foundation urges consumers to develop partnerships with all of their health care clinicians.

In the six years I have lived with pseudo-obstruction, I have interacted with the usual variety of physicians with their own particular prejudices. The rhythm and nature of this chronic illness, as well as its constant presence in my life, have caused me to evolve into a different, more vocal patient.

 

As a patient, I have always possessed some of the qualities that are necessary for a good working relationship with the physicians. However, some of my traits proved to be dysfunctional and destructive to my overall well-being. While I was always well-informed, questioning and well-versed in my disease, I was at the same time, the dutiful, compliant patient. This combination brought me to the doctor knowing and understanding what “ought to happen,” yet quick to accept the doctor’s formulation - even if it ran contrary to what I knew and lived.

 

In my case, there was a very long period where I was told that the best course of action was to do “nothing” but diagnose and re-diagnose. There was little effort to treat, and in this process I continued to deteriorate physically, in a dramatic fashion. Even though I knew it could not be good to just allow this wasting to continue, I assumed “they” knew what they were doing, and that it was all right that I was weaker with each passing day. In spite of my growing sense that I would die if they could not decide what to do, each time I would leave my appointment convinced that it had been wise not to speak up.

 

Patient Participation Is Needed

The years have taught me some very important lessons about my illness, and also about myself. I have become a new patient as a result of this knowledge. While I am still well-informed, questioning and well-versed concerning my disease, I am no longer dutiful and compliant. I have learned that I must be an expert concerning my disease. Not only in what I experience day to day, but also in what these experiences mean. And, most importantly, I have learned to bring this expertise to the doctor with each visit.

 

My most recent example of this need to share occurred when a new physician was assigned to my case. He made it clear from the outset that he did not believe that patients should be maintained - long term - on parenteral nutrition. Equally clear was his determination to convince me of the efficacy of his position.

Being new to my case, he was unaware that I had at one time suffered severe malnutrition and wasting. He had only seen me healthy and vital (thanks to TPN). I was not about to risk having to rediscover, with him, the toll that malnutrition could take upon my life. So I came to my next appointment as an expert.

I brought pictures to educate the doctor about the severity of my past malnutrition and I described for him what my life had become at that weight. I was very clear with him that I did not want to risk losing my present good health. I let him know that I was aware of all of the risks of TPN and that I was willing to take them in order to maintain the quality of life I now enjoy.

 

My doctor heard my voice clearly and was struck by the difference in health he could see between me now and me in the pictures. He understood my parameters explicitly and recognized that the current level of equilibrium was due to TPN. Finally he was able to agree that currently we had a winning program that should not be adjusted.

 

Had I not been so clear and definite in my position, I probably would have been led to try it his way. However, with the benefit of my experience, I knew that to go without TPN again would have risked my good health. And while my doctor was not wrong in his position Ñ TPN is a very risky business - without it I could not enjoy my present quality of life.

 

How to Become a Partner

The nature of chronic illness allows you, the patient, to become the expert in your disease. In our modern world, patients with serious chronic illnesses can now live long, vital lives. However, this requires such patients to be the watchmen of these diseases. You who live with such illness daily, must take on the responsibility of understanding the disease and what it takes to maintain a consistent level of good health. You need to work with the physician to monitor, maintain, adjust, treat and know the disease process.

To take charge of your care, be ever mindful of these facts:

  • You live with the illness day to day over a very long period of time. This means that you get to evaluate a large sample of the disease. On the other hand, your physician’s diagnostic tests only sample a very small portion of the disease in a very specific situation. Thus, you can bring your doctor a very large sample of information concerning the nature of your disease that he or she otherwise has no access to.

  • It is your responsibility to bring this information to the doctor’s attention so that together you can discuss treatment options. Your doctor is not the only expert present in the room who can determine the course of treatment. You are there, and should be an active partner in the reporting and decision making.

  • As a patient you must be willing to understand the risks and assume them with the physician. You cannot expect the physician to assume all of the risk for you. The physician will be more willing to work with you if he or she understands your willingness to take such a position.

  • You need to let your physician know the requirements of your life. Only you know what you need to maintain a consistent level of quality in your life. A doctor may make assumptions about your life if you don’t take the responsibility to tell him or her about the particulars of your unique needs.

Knowing how crucial your role in reporting and decision making can be, learn to work with your physician and share your expertise. As the saying goes, “Two knowledgeable heads are better than one.”

more Calendar

5/6/2017
Oley Regional Conference

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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