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When classified a "Difficult Patient".....

Fay A.

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My case has not been a straight forward experience. During my first surgeries there were errors in pathology and failures to remove tumor that led to erroneous staging and improper treatment recommendations. There were failures to provide referrals for treatments, and failures to provide referrals for second opinions. It was, and still is to some degree, a battle to get the help I need(ed.)

And because I did continue to fight for myself, and ask questions-especially if things were not going as it seemed they should-, and because I did go to other Physicians looking for answers and assistance I have been labled a "...difficult patient..." and told at one point I was "Doctor Shopping". This lable follows me where ever I go and when ever I meet with another physician. And just to be clear, I wasn't looking for pain meds. I use them only when I absolutely must.

How can I overcome this negative label? I am not the one who made the pathology errors. I am not the one who left behind malignant tumors that resulted in another Thoracotomy. I am not the one who failed to identify or treat a Pseudnomas Infection. I am not the one who-in the midst of a Clinical Trial-changed the resolution of the required follow up CT scans which resulted in erroneous reports on disease status. All I did was ask questions and push for correct answers.. And I need(ed) correct answers because I could not (cannot) make good decisions with bad information. Now I can't get a straight answer if my life depended upon it..which it does.

I'm not the bad guy here..... I have accepted that I probably will have to go elsewhere for treatment, but having gone "elsewhere" a few times already, what is the best way for me to present my side of this? It took a while for me learn that in addition to sending copies of my records to the new providers, someone in the employ of my past providers was also doing a little character assassination. Do you have any idea of how disheartening that was(is)?

I am not the only one who has gone through this. And your objective recommendations on how to deal with this issue will be appreciated. If you have an appointment with a patient, and the medical records do not provide correct information, or the information in the records is misleading-and the patient can provide documentation that the information you have received is erroneous or questionable-how can the patient best present this to you?

Thanking you in advance for your help with this. I know this is a tough one.

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Fay, honesty is what works best. Be your compassionate, passionate, articulate, kind and caring self, and any provider will see that you are sincere. Explain that you have zero margin for error; your life is on the line and you intend to fight for it. You have Stage IV lung cancer; you MUST advocate for yourself.

I once told an arrogant surgeon who scolded me for being "difficult" when my father was very ill (before the cancer diagnosis), "I WILL advocate for my father." Plainly. This is not the way to make friends, of course, but I did get my point across.

A health care provider should never label someone for fighting for their life. You are doing what you must do. You cannot undo that, and should not. Keep up the fight, my friend.

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My Dear Friend Fay,

Your words my dear right here in your post, says it all. I would suggest you make a copy of what you just wrote to all of us and share it with those that are willing to help you and will be willing to take GOOD care of you.


Much Love and Support,


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Faye, I'm not sure what to tell you about this. If you are transferring your care to another physician/health care system, generally the original provider will just send records without editorializing so I don't think there will be many preconceptions when you arrive. I have patients who transfer their care to me all the time and I don't have any predrawn conclusions about them.

Now if you are saying that your previous medical records were intentionally falsified which will make it difficult for you to get appropriate care, that is a completely different matter. If you think that your scans have been incorrectly read then you should take them for an independent review; don't ask them to send the films, just check them out yourself and take the xrays to your new doctor and ask for them to be independently read.

The only patients that I have found "difficult" are the patients who do not trust me. By trust, I don't mean patients that ask questions about treatments, diagnoses, etc. I mean patients who assume that what I am doing is incompetent. There needs to be some level of trust that I have some idea what I am doing. When that trust is not there, I generally suggest that the patient consider getting their care with a physician whom they think they would be more comfortable. I have also had patients who basically come to me with an agenda and know which treatments they want based on their own research. I am in a basically no win situation when that happens and unless I think what they have chosen is completely dangerous, I have gotten to the point where I let them direct their own treatments and am basically there to sign off on their orders.

So I would suggest a clean slate. Get your records from your current provider (you have a right to your own medical information). Make the appointment with a doctor you trust and take the records yourself. Explain what your goals are and what has happened in the past that has been a concern for you. Even if you feel that the poor care was intentional, try not to express that to your new doctor. If this does not feel like a person in whom you can put your trust, then rinse and repeat until you find the right person.

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I want to say Thank You to those who took the time to answer. I do want to respond to something Dr. Joe stated.

Dr. Joe, as a Lung Cancer patient I do have an agenda. I want to live for as long as I can and as well as I can. I will do whatever it takes to be able to open my eyes each morning. And I want to be the one who decides any and all quality of life issues. It is my life. I have trusted each of my Physicians, until they have given me a reason not to do so. And the reasons are more complex than just a disagreement on how to proceed.

You have given me something to think about. And I do thank you for answering so honestly.

Hope all have a Holiday Season filled with love and laughter.

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What does everyone think of an Onc. who says, I can give you Iressa. Than asks me what I think. That was on my visit back in August. Then in November says, we can try Tarceva, then asks me again what I thought.I'm looking at it like, my CT is stable and continued shrinkage. Now I finished radiation in May 2003 and last chemo Taxol/Carbo in Oct. 2003. As Peggy would say, if it's not broke why fix it. By the way my CEA is 1.7. Bloodwork perfect. ONCDOC can you help???

Thanks, Karen

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Thanks for your response. I feel really good and I am thinking, I don't need any more meds in my system, apparently somethig is working on it's own in my body. No progression. My question is this, how can I determine if I need Irressa/Tarceva.. Should this be the doctors call? She didn't push it when I said no. Does this mean she is comfortable with what is going on in my body. I told her that I was feeling very good and she said ok. Next appointment 3 months...


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This is a really good topic and I'm glad people are responding.

Cheryl, I always give recommendations to my patients about what I think the best treatment would be. I guess maybe I've just gotten fatigued but my philosophy has become that my patients are adults, I am here to offer advice, not dictate to them. Sometimes they agree with my recommendations, sometimes they agree with recommendations from an acquaintance or the internet. If they wish to have a treatment that is not my first choice but is not dangerous, I arrange to have it done whenever possible. For example, I took care of a young woman with advanced ovarian cancer who had been to about 6 different oncologists. She was not interested in chemotherapy but had read about IV vitamin C on the internet and wanted to try that as a treatment. I recommended chemotherapy. She wanted vitamin C. I found some data that at least reassured me that the treatment would not actively kill her. I gave her vitamin C. She died 2 months later. Her husband was extremely grateful for allowing her to try a treatment that she had faith in. She would have definitely been described by her previous doctors as a difficult patient. I found her to be an intelligent, terrified woman. She just needed a doctor to let go of his/her ego and give her what little control she could get of an uncontrollable disease.

Karen, I think your doctor is offering you the opportunity to take control of your treatment. He is not making a strong recommendation because no one knows if Iressa or Tarceva will help in your situation. I would put it this way: Tarceva and Iressa are generally safe and for many people quite well tolerated. They are very expensive. There is absolutely no scientific evidence that they will prevent lung cancer from coming back after chemotherapy and radiation. There is absolutely no scientific evidence that they won't either. You don't have the luxury of waiting for study results. Hence the question, so what do you want to do? I am personally not putting my patients on those drugs in that situation but I don't think it's wrong either. If a patient absolutely wanted to take one, I would try to get it for them (see philsophy above).

And if you need your doctor to just tell you what he thinks you should do, you should definitely express that.

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