Dad — an Empowered Patient Sets a Fine Example

…. and today is his 81st birthday.

When people ask me how and why I began doing patient advocacy and empowerment work, I first tell them about my misdiagnosis, and then I tell them it’s because I learned how to be an empowered patient from my dad.

Since beginning his battle with cancer in 1986 — yes — more than 21 years ago — Dad has battled his illness every step of the way. From learning everything he could, first through the libraries, then through the Internet, to partnering with his doctors but retaining decision-making for himself, to second guessing problems with a drug he was taking, then figuring out he’d been given the wrong instructions, to doing all the same for my mom to help support her through her Alzheimer’s disease… yes… dad is the epitome of the empowered patient.

Learn more about the steps he has taken here….

Then join me in wishing him a Happy Birthday!

I’m proud of you, Dad…. with love…. from your eldest

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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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How to Complain to Your Doctor – Part I

Several months ago, I heard from Nancy about a terribly embarrassing experience her husband had suffered during a prostate biopsy. From the beginning of the procedure through the end, he had been treated inconsiderately and rudely by the nurse. The urologist was condescending and short. And ultimately, once the biopsy was over, and wearing no clothing and with no covering, her husband was told by the nurse to get up and get dressed…. whereupon he got off the table and fainted. When he came to, he was crumpled on the floor, covered in blood, surrounded by a half dozen people, naked, and horribly, horribly embarrassed.

Nancy was appalled at the behavior of the nurse who she felt treated her husband like a second-class citizen. She also felt as if the urologist had no interest in hearing about the event. Her husband was afraid to say anything because he didn’t want lesser treatment from the urologist, whom he will have to see from now on, on a regular basis. But Nancy was afraid her husband would decide not to keep his appointments at all, based on the excessive rudeness of the nurse. He had already postponed his next appointment a few times.

Nancy’s question to me: she wanted to complain, but how could she do it so the doctor would talk to the nurse, and how could she make sure the nurse and doctor wouldn’t take it out on her husband at later visits?

There are actually several aspects to this question. Like healthcare itself, there is prevention, treatment of symptoms, and finding a cure.

Prevention would have had to have taken place long before Nancy’s husband was biopsied. Prior to ever seeing that urologist, he should have asked among his friends, others who have suffered through prostate cancer or had previously been biopsied, to find a urologist they respected and spoke highly of. That very likely would have found him a much better doctor than this one is turning out to be.

Treatment of symptoms is addressing the event itself.

Finding a cure is the walking — the taking his business elsewhere — leaving that doctor in the dust and finding one her husband can talk to.

Setting prevention aside in Nancy and her husband’s case (too late!) my choice would have been the cure. If this doctor had been their auto mechanic, or any other service provider, then they never ever would have put up with the behavior of either the doctor OR the nurse, correct? Nor should they in this case. Especially in the case of a specialty like urology…. while you won’t find them on every street corner, there are enough good urologists out there — so why not find one you can communicate with?

But Nancy wants to treat the situation. She wants to write a letter to the doctor, and she has questions about how she should approach that, what she can say that would most effectively explain her and her husband’s dissatisfaction with their experience with that doctor and his staff.

So here’s your cliffhanger…. tune in tomorrow! I’ll tell you what I’ve suggested and what’s going to happen from here.

(Link here for part II)

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