Posts Tagged 'Patientude'

How to Complain to Your Doctor, Part II

We began yesterday with the story of Nancy and her husband, and the obnoxious nurse and cold and aloof doctor who performed a prostate biopsy on Nancy’s husband. Her husband was humiliated by his treatment and Nancy wanted to let the doctor know about it.

My original suggestion to Nancy was that they needed to find a new doctor. This doctor and his nurse are not going to change their stripes.

Nancy, however, decided she wanted to let the doctor know how rudely her husband had been treated by the nurse, in hopes the doctor would speak to his nurse. So she wrote the doctor a letter.

Nancy contacted me a few days ago to say her husband doesn’t want her to mail the letter. He is afraid the doctor will not treat him any longer if she mails her letter.

So, Nancy asked me, what should she do?

I actually provided a number of thoughts to her as she considers next steps. Here they are:

  • At this point, Nancy and her husband need to think more in terms of how this nurse and doctor treat them, and less about how they treat others. As noble as it would be to “fix” them for others, it seems for now that their better efforts are concentrated on improving service to themselves.
  • Prostate “challenges” are something a man must live with for the rest of his life. In some ways, his conversations and experiences with his urologist will be more intimate than his conversations and experiences with his wife. Granted, he won’t have to see the urologist very often, but — he will have to trust the doctor implicitly to make the most effective recommendations for a long, and as healthy as possible, life.
  • Her husband has two choices. He can either find a doctor he does respect and does trust. Or he can work with this one to find that level of respect and trust that is so necessary.
  • Keep in mind that the best doctors don’t have to be the nice doctors. And the more specialized a doctor, the less he really needs to be nice. That’s just a fact of life! And remember, too, that nice does not equal skilled. There are thousands of “nice” doctors who aren’t good at what they do. And vice versa, there are thousands of very skilled doctors who just aren’t very nice.
  • In order to gain respect, we have to command respect. So perhaps the best approach for Nancy’s husband is to begin thinking like a consumer and less like a patient. For example — when the nurse took him into the room to prepare for the biopsy — her husband could have asked for a sheet or something as a cover. We don’t have to act like sheep — we can ask for what we need!
  • Her husband needs to look for ways to command what he needs — because sometimes that is all that is necessary to gain someone’s respect. For example — if you have to wait in the waiting room for a long time, ASK what is taking so long and suggest that you’ll need to make another appointment if they can’t get closer to the right time. Or — if the nurse says something rude, why not ask her if she’s having a bad day? That gives her a way to reconsider how she’s treating you. (Also, maybe the reason she is so foul is because the doctor treats HER like a second class citizen? That’s very common, I am told.)
  • The real point to all of this is that (as Dr. Phil says) we treat people how to treat us. If we don’t stick up for ourselves, we get run over. Knowing Nancy’s husband will have this lifetime relationship with his doctor, it only makes sense to begin immediately to change the tenor of that relationship to one of mutual respect, and not so much like a parent and child.

So, OK, I know these aren’t ways of complaining to your doctor — some bait and switch for which I apologize. But it’s to make a point.

I used to suggest to patients that they if they have problems with their doctors or the staff in the office, they spend some time explaining it to the doctor. But first one needs to gauge whether the doctor will be receptive to those kinds of comments — and receptive here means, will the doctor actually take steps to improve the situation? In some cases, that’s still appropriate.

In this case, though, and based on a half dozen emails with Nancy and dozens of other patients, it’s clear that very often, the real problem is more about defaulting to letting the doctor and staff control them, as opposed to proactively sticking up for themselves and commanding the respect they deserve.

Sharp patients — those with patientude — know that the relationship among a doctor, staff and patient should be respectful. When patients behave as if they expect that respect, then their chances of being treated respectfully will be much improved.

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CNN and Misdiagnosis: Part II

CNN’s Empowered Patient, Elizabeth Cohen, provided more tips this week about what to do if you think you’ve been misdiagnosed.

My own misdiagnosis speaks to four of her five points — and if you have just a seed of a doubt about whether your doctor has diagnosed you correctly, please take Elizabeth’s advice. Here are her points and my experiences:

1. Ask for more tests. The CNN article tells the story of Nancy Keelan whose diagnosis was missed five times until she finally asked for a test her doctor had not ordered. It turns out that after three years of missing the diagnosis, Nancy had endometrial and ovarian cancer.

In my case, two labs had “confirmed” that I had lymphoma based on a biopsy of a lump removed from my torso. Ensuing CT scans and blood tests showed no sign of the lymphoma, yet my doctor insisted I needed chemo. Only by studying my own test results, which were all written in med- and lab-speak which I didn’t understand (meaning I had to look them up), did I realize that another test result was missing. I asked for that test. It turned out to be the pivotal one — the one that proved I had no cancer. If necessary, I also could have asked for a PET scan which would also have revealed I had no cancer.

I need to point out here, too, that I firmly believe that the reason the doctor didn’t look into more tests is because he wanted me to undergo chemo. He is an oncologist. Oncologists make their big money from putting people into treatment. Oncologists are the only medical doctors who profit directly from selling drugs themselves. Read more here.

2. Ask : what else might my illness be? If you have a list of symptoms and you begin reciting them to the doctor, then before you ever get anywhere near the end of the list, the doctor has already figured out what he thinks you have. Never mind that it might be wrong!

From there, he tries to fit what you have into his ideas, not fit his ideas to what you have. It’s backwards.

There is a process doctors use called differential diagnosis. Doctors consider a list of possible diagnoses, then hone in on the right one based on evidence from your symptoms to medical tests. What you want to know is what other possibilities are on that list.

In my case I was diagnosed with a disease called Subcutaneous Panniculitis-like T Cell Lymphoma. The other very obvious possibility was panniculitis — and it turns out that’s what it was. Benign. Goes away on its own. Certainly a better alternative than lymphoma.

But my oncologist was trying to start with the lymphoma and fit my symptoms to it. He asked whether I had hot flashes or night sweats — which I did — which he therefore insisted were signs I had cancer. But hey! I was 52 years old and I’m female. Hello? Geesh.

3. Don’t assume no news is good news. This is so true! Patients tell me frequently that they have been given a medical test, and since they didn’t hear back from the doctor, they assume that means there is no problem. Guess what? Results get lost all the time. The specimen or biopsy may never even make it to the lab for review to begin with. They might never be delivered back to the doctor’s office. They might get lost in the mail or emailed to a spam folder. They might fall to the floor or get filed in the circular file by accident. They might get left in the copy machine, ferheavensake.

Even if they do come back, if they seem unusual, there’s a chance they are wrong anyway! That happened to me.

And, my original biopsy results never came to me until two weeks after the biopsy. I did nag the doctors — but somehow the biopsy had gotten lost in the shuffle because it was the 4th of July holiday. (And don’t even get me started on medicine and the holidays!)

4. Assume your doctors don’t talk to one another. This is way too true. They don’t talk to each other. Period. They don’t WANT to talk to each other. Further, they avoid talking to each other – because — there is no way they can get paid for talking to each other. I do think that Elizabeth’s suggestion that you get them on the same conference call is unrealistic. First of all, most of us don’t have access to the technology. Secondly, because there is no reimbursement code for them to get paid for that kind of conversation, you need to set up a scenario so they WILL talk to each other.

Better to set up an appointments with both at the same time, then show up at one of the offices, and while you are in the doctor’s office with doctor #1, have him place the phone call to doctor #2. After the conversation, get over to doctor #2’s office so he can make a reimbursement claim for you, too. That way they might take the time to talk to each other because they can both get paid for it.

In my case, despite several requests, my oncologists never spoke to each other. Those were the days when I was innocently trying to find my way. Had I known then what I know now? I would have been far more insistent, and an even bigger thorn in the “bad guys” side than I was.

After all — it’s my body and my life, and I’ve simply hired them for their services. If they don’t do it right? Well then — I will do what it takes to make sure it’s right.

And THAT is what I call Patientude.

Thanks for the reminders, CNN.

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