RE Difficult Patients

[Elaine]

I know we aren't supposed to reply on the Ask the Experts threads, so this is in response to Fay's question there if anyone needs to know the context of what I am writing.

I was recently called "difficult" to my face by the medical director of the clinic where my second PCP, "Dr. Skinny" is employed. I know what a slap in the face that is.

I was called difficult because I questioned the Dr. (and who wouldn't if you have been following my recent posts), spoke to my HMO about her (which caused them to investigate) and demanded I be allowed to leave her care. I was also accused of Dr shopping since Skinny was my second PCP since DX.

When I got my records and hand carried them to who will become my new Dr., there was nothing in the reports that indicated that I was "difficult." --however, the first words out of my mouth to my new Dr was this" "I want you to know that I have been called a "difficult patient." She laughed (thank God!) and asked why.

I told her. Because I felt at ease enough to tell her and she could obviously see my distress, I think she is one of probably many, "right" doctors for me. I just happened to find this one.

I guess my point is this: when a Dr sees that a patient has seen other Drs, and several other Drs over the past months or few years, I think they will automatically think "difficult", so I think that a person should just address that up front with any new Dr.

It gets that out of the way, so to speak, and if the new Dr. does not seem empathetic to the situation, then I say go somewhere else because that stigma might be there, regardless if it is unspoken.

Further, when I saw all my records, I saw that the Drs reports did not adequately reflect many things. thus I prepared my own chronology, which my new Dr gladly accepted as part of my record.

Now, my troubles aren't over, not at all, but if I can just bear it out until Jan 1, then I will feel at least some confidence that I have a Dr who will view me as part of the team.

When I move, I will have to start all over, but I will follow my own advice until I find a Dr who I can trust.

I know Dr. Joe says that he doesn't have preconceived notions about patents who transfer to his care, but I think that many Drs do and if not consciously, then subconsciously. I think it can and does effect they way they respond to a patient.

Like I told the medical director, she can get my records from birth and see that I never switched Drs unless I had moved (once I changed Pediatricians for my kids), and that was not because I always LIKED my Drs.--but I did trust them and felt I could speak to them adult to adult, human to human.

What I found here was not in any way human to human. I wonder if it is the stigma attached to lc, that made the Drs, and nurses to a degree, treat me as they did.

As a side note, I did find that some earlier records from last year were falsified--to the point where things were crossed off, which I think is illegal and Xrays have "vanished." It does happen.

I don't plan to outlline what I think would be the best treatment to anyone. But I do plan to make sure that all options are covered, including no treatment.

All I can say is "THANK GOD" I will no longer be in an HMO in a month or so. It was and has been hard fighting on both levels.

elaine

[cindi o'h]

Elaine,

I just want to say that many years ago, when I was in a support group for Lupus..(I thought it was Lupus...the jury is still out on that one) I met a beuatiful bright and charming 19 year old who was very very ill. She "looked" the picture of health. With lupus, looks can be very deceiving. She was a big part of how I have become my own best advocate.

She had stories....let me tell you.. she had been on feeding tubes and fighting for her life. She would call the rheumy's office to be told that the doctor wouldn't be able to see her for a month. She would go to the office and stand in front of the receptionist. The receptionist would tell her she needed an appointment. She said, "well, then I am here to make an appointment. I need to see my doctor within the next 20 minutes."

My little friend WOULD NOT move. When the doctor was called to extricate my friend, she was rushed instead into his care. He KNEW she was sick and needed immediate attention.

This is just one example. She had stories of screaming matches to get someone's attention to help her. Whatever it took. She said, "If I don't have (the "B" word) written in my chart, then I am not doing a good enough job for myself!"

Who cares what their opinion is of you as a person? You are there for health care, not to make friends. If they do not cooperate, start screaming like my little friend. YOU are fighting for your life. YOUR life is valuable. It is more valuable than someone's ego. Or someone's opinion of who you are.

Doctor shop...me? All the time. If I had to settle for the first or the second or the third, I would be dead by now. Trust me on that one. I have my share of medical horror stories. Fortunately, I also have my good experiences too. The good ones, I stick with. The bad ones...bye bye. I hire them. They don't hire me.

God bless my little blonde lupus friend and also my public health prof. "Find a good doctor at all costs...there is a difference."

I don't need to explain why I present to the care of a new or different doctor. And frankly, I don't give a dang.

Good luck, Elaine. You are stronger than you think.

All my best...

Cindi o'h

[Lisa O]

I have children. I do not apologize for getting multiple medical opinions when one of them needs medical attention. Last year my daughter needed gamma knife surgery for an AVM in the right parietal region of her brain. I knew I would get no less than three opinions before I would choose treatment. Of course I would shop doctors for her!

No one questioned that and it was accepted and applauded. Now I am fighting for my children to have a mother. I will be no less assertive or careful because I love and protect my children enough to make sure that they have the best possible future.... at whatever cost.

Do no less for yourself. Ever.

[Elaine]

Cindi

I agree that it shouldn't matter to anyone if a person wishes to change Drs.

But if you type in "difficult patients" in Google, you will get over 4,000 hits--there are courses Drs take to learn how to handle "difficult patients" and how to spot them early on, and how to get rid of them.

Many of the articles talk about ways to turn difficult patients into "good" patients.

Some of the articles even talk about how sometimes it is the Dr. who is making things difficult and give advice to Drs. Glory Be!

There are whole lists of nicknames Drs give to patients--horrible names.

One of the attributes of "difficult patients" is patients with a terminal illness.

That alone can make a Dr see a person as "difficult" especially if the patient has seen several different Drs, which is always suspect, it seems by the things I read.

The one thing that is evident is that it is the patients, sometimes very sick or emotional people who get the label, and thus often the blame.

We all know that there are "Difficult Drs.", but there are no courses for us to take on how to deal with them.

Some of the articles focus on patients who are likely to "slap a lawsuit"--I would like to know where the information is that will tell me what Drs are incompetent and how to protect myself from those Drs.

People with the so-called "power" get to do the defining.

I do care about the label. I don't want that label dictating what a Dr does or feels about me--as that definately effects the care they render.

But, maybe some Drs are more "careful and thorough" with "difficlut patients." They ought to be that way with ALL patients.

Lisa, no one puts a stigma on a parent with an ill child who visits many Drs--it's almost required behavior for a parent if the child seems not to be Dxed correctly or is not responding to Tx.

Sheesh, they make made for TV movies about that!

But for adults--especially women, we get labels.

For me, it was best to address the issue up front, but not everyone will want to do that.

It felt right, because one way to a counter a label and the discrimination that goes long with it, is to redefine and use the word from the aspect of the one who is labeled.

In my case, I defined "difficult" as being a patient with some brains and a new found intolerance for BSing around (not the words I used).

elaine

[teresag]

I shop for a mechanic, a dry cleaner, and a plumber. Why not a doctor? I think the attitude that disdains "doctor shopping" is one of paternalism. It is the belief that a "good" patient sits quietly and does exactly as the dr. says. A "good" patient does not interrupt nor contradict the doctor's words. It is people like you, fighting for your lives with lung cancer, lupus, or whatever, who are changing the paternalistic attitude of health care. But it's a slow process. I do believe that new physicians are seeing the light and trying to work with patients, not simply act upon them. Keep up the fight and best wishes to everyone. - Teresa

[cindi o'h]

Elaine.

I do get it. But, it is so twisted that it is difficult to straighten out.

You should not have to "care take" your professional. It is just not right. A properly trained professional puts aside their personal feelings and surrenders themselves to the care of the patient in body mind and spirit. Professionalism dictates considering oneself last on the list of one in need when one is in the presence of a patient. All energy and capabilities needs to be focused on that individual for success for the patient and for self gratification of doing a good job.

It may be that your professionals are lacking in professionalism. You should not have to even think about anything other than being straight forward with your presentation and thoughts. You should not have to give any consideration as to how you are personally being perceived.

I am not doubting that this has been your experience. During our converstaions, I have been made physically ill by the mistreatment, non-treatment, inattentiveness that you have received. It makes me just as ill now that you are forced to consider surrendering who you are to "take care" of the emotions of the doctor to get the care that you deserve and need.

All my best and then some.

Cindi o'h

[stand4hope]

Professionalism dictates considering oneself last on the list of one in need when one is in the presence of a patient. All energy and capabilities needs to be focused on that individual for success for the patient and for self gratification of doing a good job.

Cindi, That's a great statement, but that philosophy is true for all men great and small and doesn't just apply to a doctor/patient relationship. In a perfect world, huh?

People have stories similar to those of Elaine, Cat, Di, and many others in all professions. I understand that it's a huge problem when we're talking about our lives, but nevertheless, humans are humans and I'm afraid it's going to happen no matter what.

Please don't misunderstand this post. I'm as sympathetic to this problem as everyone else. I just think it might help to get it in the perspective that there are thoughtless people in ALL professions and ALL walks of life. The good news is there are just the opposite (thoughtful, kind and caring people) in ALL professions and ALL walks of life.

I had a similar put-down from an ear specialist a few years ago. It's a long story, but I was having some head problems and had been to a couple of neurologists. This el-creepo jerk put me down, was condescending and an absolute creep. Started off with, "Well, you've been to all these hot-shot specialists, neurologists and all this. You've got a simple case of tinitus plain and simple." He said this with disgust toward me. You would have had to have seen and heard the attitude to pick up the tone. AND he said all this before he ever got his fat a** out of the chair and even looked in my ears. And he was fat. I left that office in tears. So I do understand the attitude.

I LOVED Teresa's post.

Love to all,

Peggy

[stand4hope]

P.S. Go ahead, Ry. I know you have to write me up again for that slip of the tongue.

Peggy

[cindi o'h]

You are absolutely right, Peg. This is not a perfect world. And we are not either.

I have got my list of horror stories. Can't count the mental torment and torture recieved while under the "care" of a doctor or sometimes nurse...

I am relying on my own personal experience when I say that I know where Elaine is coming from. It is during the times of desperation that I would ruminate on what if I said this or what if I said that... what if they don't believe me? How will they perceive me if I lose control and breakdown in tears? What if they think I am drug seeking? What if ....what if... THAT is a terribly emotional and vulnerable place to be.

When my needs weren't respected and I felt that I wasn't taken seriously, I did not take off sooner than later in most cases. I would give the benefit of the doubt...maybe they are having a bad day. Most always I would examine my own words and actions. I doubted too that I was a "good" patient. I wanted to be. But, how do I get my needs met? It is tough. It still is. But after I have been slapped around enough, then enough is enough. And I can recognize when I am being mistreated. And whoosh! I am outa there. I have had my more than fingers and toes times where I came out an office feeling more hopeless and helpless and crying than when I went in. A rheumatologist told me with a big smile on his face, "There is absolutely nothing wrong with you. I am pleased to tell you that you can stop going to doctors now!" I went out of there thinking that the pain was all in my head and that I was crazy! I came from the physiatrist's office today and he was telling me about Q-angles and how my leg is messed up from RA in my knees. Am I going to go back and sue that other doc? Water under the bridge. That is one teenie weenie doctor horror story of about a hundred that I have. I have learned to let go of my hurt, resentment, frustration and move on. It does my body no good to have these ill wills. So, if something doesn't strike me right with a doc, I am taking the best care of myself to find a replacement. I need to. I got some serious stuff going on.

oh. On the way out of Dr. G.'s office today, he offered a hug. His brother is battling brain cancer and we got to talk about feelings on a Spiritual level regarding life and death, etc. I accepted his hug. Just nice. I am grateful.

I have gleaned my ologists all over town. It took awhile to find the right match for many. The ones that I have found who help me, I am sticking with. They are important pieces in my survival.

Maybe I am missing something. I took no offense to your post. Not at all. Just voicing my thoughts to Elaine. As I told her in a PM today. If I were treated/mistreated the way she has been by her HMO, I would go up to the Kansas Board of Medicine, the Insurance Commissioner, and the Attorney General. Something is very very wrong about what has happened to Elaine. She is a patient with a serious illness who is trying to get some help and now she is made to feel that she has to crawl and cow tow to get "some" health care. It just ain't right.

What is so sad about this whole thing, is that in Elaine's medical insurance system, she needs to stay in that system and use the doctors that the accountant tells her to use. How ridiculous is that? Everytime I talk with her, I get madder and madder at this crazy insurance/HMO that she has and is forced to stay in. Why, it is downright Anti-American! Choices are taken away.

Again. All the best... I don't know what the solution is. But, at this point, I would venture that it is bigger than you. It is time for an advocate. A sick person should not have to be tortured and tormented this way.

Elaine, you have and have had my sympathies all along.

Cindi o'h