Monday, October 15, 2007

An Opinion Opinion

My para-previous post mentioned getting second opinions. I think it's a concept worthy of separate rumination; and because I'm not entirely coherent on the subject, I'll be interested to read what I have to say.

So it doesn't get lost in the morass, let me be totally clear: whenever a patient wants a second opinion, for whatever reason, s/he ought to get it, and I'd never ever discourage or disparage it. Being comfortable with whatever medical intervention is at hand is essential, and if the first doctor resists it or gets huffy, well, that's probably confirmation of the need. But it has always bugged me when the reason is a requirement by some insurer or another, or when it's because someone (an agenda-driven talking head; a relative; a BFF) has made the patient feel guilty or inadequate if they don't demand it. It's possible -- and I always made a hell of an effort -- to establish a relationship of trust based on being fully informed, respectfully addressed, and carefully listened to without the need to run off.

At some level, when a patient requested a second opinion I felt like a failure. Drawing diagrams, writing booklets, soliciting questions, I succeeded nearly always. Many is the time my patients told me they'd never had a doctor explain so thoroughly and understandably. So to me -- ever self-critical -- a request for a second opinion said, somewhere in my lizard brain, that I'd not done something well enough. I recognize that many people simply see it as due diligence: taking control of one's health includes exhausting every avenue to information. But in that evanescent and impossible best-of-all-worlds, that fantasyland, I like to think doctors could be good enough, and patients open enough, to justify the idea that one opinion can suffice.

Patients have the right to feel right. They are entitled to full disclosure, to thorough explanations, and to complete answers to all their questions. And people have senses. If they feel uncertain or dissatisfied; if there are warning bells ringing in their heads; if for whatever reason they are left uncomfortable with a physician encounter, they should absolutely positively get another opinion and/or another doctor. But what's wrong with feeling OK in the first instance? If what you hear makes sense, if you think the doctor in front of you is being honest and thorough, must you be made to feel like an idiot for standing pat? Some people show up broadcasting distrust from before the first hello; or bring someone who glares dares from the co-pilot seat. It ices the wings of the encounter before it ever gets off the ground. That attitude comes from giving too much credence to crap. Don't cheat yourself, says I. Don't close the barn door before the horses are in. Or something.

Of course, it's not always simple, and doctors are imperfect. I'll examplify.

There was a time when, because of insurance demands, I saw lots of people in need of second opinions before hernia repair; and had to send them for same, as well. (After looking at a few years of predictable data, most companies have dropped most such requirements.) Usually it's a no-brainer: you can see the hernia as the pants are coming down. But I've had a couple of people in whom, for the life of me, I couldn't confirm the hernia for which they were scheduled to be operated. It's uncomfortable. Often, because the mandated need for a second opinion was realized at the last minute, I'd be seeing the person within a day or so of the operation. In part, it (the non-finding) happens because you can't always feel a hernia, even when it's there. They don't always pop out on command, with office maneuvers. I'd explain that to the patient, and tell them the fact that I can't feel it doesn't mean it's not there.... Unpleasant, mutually. When the patient had symptoms, and described what surely must have been a hernia, I always explained that it was a probably a safe assumption. But sometimes it was a person in whom the "hernia" had been found on a physical exam, and there'd been no signs or symptoms at all. When such a person was sent to me directly from the primary doc, I'd generally recommend against surgery until things were more clear, trying also to avoid any implication that their doc was wrong. But what to do when it's a second opinion referral from a surgeon who had them on the dotted line?

With breast cancer, some aspects of treatment are extremely complex, and changing nearly daily. Along with the good information available, there's lots of bad, sometimes leading to distrust as the default position going in, which makes the job of explaining even harder than it already is. I still get upset when I think of my patient who went for a second opinion and died a couple of years later, very possibly as a result. She had a very large cancer in her breast, and for several important reasons I told her she ought to have mastectomy despite her hope for breast preservation. She accepted what I said and why I said it, but saw another surgeon anyway. A young guy fresh out of training, sure he knew way more than the old guy, he told her she could safely have lumpectomy and radiation. He convinced her, signed her up, and went ahead. As I was sure would happen, he ended up cutting through tumor at all edges of his large lumpectomy, operated again unsuccessfully, and not very much later, operated once more to do a mastectomy. I can't say with certainty she would have been saved if she'd had it at the outset, but cutting through tumor that extensively may well cause direct seeding into the bloodstream, if it hadn't already happened; and three major operations on incompletely treated tumor seems less propitious than having only one.

So there you have it. Second opinions aren't necessary except when they are, and they're good for you except when they aren't. Have a nice day.


Anonymous said...

Dr. Sid,
I am enjoying your blog. I just have to comment having had a "surgical encounter" myself. I felt immediate rapport with my oncologist/surgeon (I am not sure of his "title")and never felt the need for a second opinion. He just exuded confidence without arrogance and that really appealed to me.
4 years and counting, cancer free.

Anonymous said...

Dr. Sid,

I loved your book and I love your blog. I've lurked for a while... I started treatment for premenopausal Stage IIB ER+/PR+ HER-2/neu-neg breast cancer just about a year ago and I'm good! I'm at the tamoxifen for 5 years stage. Your blog has given me a useful perspective.

I'm a very lucky girl! I'm one of those irritating patients that come in with a little notebook and ask question after question... but I've been so very fortunate. Both my surgeon and my oncologist have been very patient with me.

When I found the lump, my FP recommended a general surgeon he respects. And my surgeon has quietly given me very good advice at a number of critical junctures...

I'm responding to a few themes:

- lumpectomy vs. mastectomy

My friend who lost his wife to breast cancer, my other friend whose wife is a survivor and who had a mastectomy+reconstruction and my husband who wanted to be *sure*... all advocated for mastectomy. I felt a mastectomy would be difficult, but acceptable. All the choices for reconstruction sounded painful. My surgeon made the case for lumpectomy + radiation, did the lumpectomy w/ great margins, great cosmesis and reassured us.

- second opinions/finding a medical oncologist.

My surgeon recommended several who he respects, and gave me this advice: "Pick someone you like and can work with. You'll be seeing your oncologist a lot more than you see me."

- patients going to the big hospital "downtown" (BHD)

Our town is home to a very large very well known Cancer Research Center. So many of my colleagues/friends have been shocked that I'm not going to the BHD for treatment. The initial attitude is that if you're not going to the BHD you're not serious about getting well.

Initially I wanted a second opinion there... and my surgeon said, sure, if it will make you more confident in your choices. So I called them, and they wanted *lots* of background information. And my surgeon had his nurse/staff fill out all of the paperwork and forward copies of all of my reports, etc.... and then after two weeks the BHD called and said they could give me an appointment -- but that I would need to switch all my treatment (both surgical and medical) over to them -- before even meeting any of their doctors! No thank-you.

What is the best way to tell my surgeon how much I appreciate the care and reassurance he has given me?

Sid Schwab said...

anonymi: thank you both for your comments, and for your stories. Anon #2: the concept of the BFH (that may not be what you called it) vs the community hospital is an interesting one, too; maybe fodder for another post... As to telling your surgeon: I got lots of little doodads from people over the years -- homegrown veggies, cookies, things they made. All much appreciated. But the things I cherish most are the handwritten notes I received. I still have them all.

rlbates said...

2nd anonymous--write him a note and include your comment, he'll love it.

Now, for my comment Dr. Sid--nice post. I have sometimes worried about the referrals I make--wonder if I send patients to people I like or if I try to "match" their personalities or if ... I hope that since I am aware of my failing that maybe (I hope) don't. Do you ever worry about that?

Sid Schwab said...

Ramona: I do. Nothing annoys me more than having a patient come back after a referral I made, to tell me what a jerk that person was. Over the years, it happens less, because you get a better idea. There have been a couple of docs with certain quirks that I warn people about in advance: one really excellent and wholly likeable orthopod who is inexcusably late, always. But worth the wait. There was (no longer) a local plastic surgeon (no offense!) about whom, when he was on call, the ER docs used to warn people who'd be seeing them that he had zero bedside manner. When you make a referral, you are putting your own reputation on the line, at least to a degree, it it oughtn't be taken lightly. I've been known to let a doc know about what I heard back...

Anonymous said...

My wife and I just received a second opinion regarding an MRI with sedation for our 9 month year old son. The first pediatrician told us that the MRI was necessary but was having difficult communicating exactly what the indications were--not because she wasn't knowledgeable, but she was rushing through the appointment and cutting us off in the middle of our questions, not understanding our points.

Leaving the office feeling generally dissatisfied, we decided to see another ped because from what we heard it seemed the MRI wasn't necessary. When we saw him, he took the time to explain why they wanted to do the MRI, what he was concerned about and what options we would have once the scan was completed. Suddenly everything made sense and we realized it was absolutely necessary to have the test and went away happy to have the exam.

The real hangup though is that I work in the hospital with these physicians (premed for the win!) and I know that the first ped is an exceptional doctor, and I trust her implicitly--it's why we chose her in the beginning. She just didn't take the time to make us feel comfortable, and we needed that comfort before we could continue on.

Patrick Bageant said...

I had a similar experience changing doctors. I smashed myself up in a car accident when I was 19 (yes I was wearing a seatbelt, no I had not been drinking) and the injuries required fusion of C5/C6 and a halo. I was initially relieved to learn who my neurosurgeon would be, because he has a tremendous reputation in the region.

But he is also, as I soon learned, a tremendous jerk. At the end of his consult I ended up asking if I could be seen and operated on by his partner instead, and I told him he wasn't making me feel comfortable. I understood the need for the operation (the films were pretty self explanatory), I just didn't want HIM cutting on me.

That was one of the very good choices I made during my recovery. Intellectually I realized the operation would probably have been just as successful with my initial surgeon, but his partner made me feel more comfortable. He made me feel happy to see him, and optimistic about my condition, and that counts for a lot.

(And yes, Dr. Schwab, I did send him a note.)

#1 Dinosaur said...

In my experience, people want second opinions when they don't like the first one. It's not the doc they don't like; just what the doc is suggesting (however well explained.) Even when it's right (as it usually is.) If they just don't want to hear it, they'll go for a second opinion, and if that doc tells them the same thing, they'll ask for a third. On and on, until they hear what they want to hear (ie, treat their breast cancer with diet and herbs) with occasional tragic results.

Anonymous said...

I agree, Dinosaur, that there are some people who simply want their own desires validated by someone with a medical degree, regardless of whether that advice is sound (your example is quite good).

However, you must realize that we haven't all (yet) gone through the years of medical school and residency to understand why things are always done like they are and that we require physicians to walk us through our (and our children's) health. This is a big responsibility, and if we don't trust the doctor for whatever reason, we should be allowed the opportunity to seek out another opinion.

Greg P said...

I don't know about you Sid, but some of the most frustrating patients I've had, and it seems thankfully there are fewer of them these days, are the ones who keep cutting you off in mid-explanation to say, "Whatever you say, Doc, you know what's right." You can't get them to acknowledge hearing anything you're saying. Give them a 10-page consent and they'll immediately go right to the bottom and sign their name. It might seem like a doctor's dream, but it's frightening, really.

Anonymous said...

It's very difficult for patients to navigate the waters when dealing with diseases like breast cancer. Not only do we need to see several different doctors, who may or (more commonly) may not communicate with each other, but there is often not enough data for doctors to completely justify their treatment preference - and each seems to have their own preference!

For example:
1. I was recommended a three regimen chemo by one doc (TAC), but another ademently recommended only two (AC).
2. My ob/gyn insisted I have an ooperectomy (diagnosted at 39, ER positive, BRCA negative), saying that I probably had an unknown genetic mutation for gyn cancers (no family history), plus would benefit from post menopausal state. Consulting Onc was again adement about retaining ovarian function.
3. GP recommended bilateral mastectomy due to lobular cancer and extensive disease in breast. Onc said no real data either way.
4. Surgeon talked me into a reconstruction that I regret. When I expressed doubts, she should have sent me immediately for a second opinion. Instead, I was talked into the worst mistake of my life.

I could go on and on. What's a poor girl to do? And if you research in the net, as I did extensively, you soon realize the impossibility of a layman emerging from the quagmire of available abstracts, studies and discussion groups with the best data in hand. There's just too much, and most of it is contradictory.

The most frustrating thing about my cancer experience has been the regret I feel over some of my treatment decisions - like my reconstruction. My second opinions have caused me confusion, and I'm unsure if I really made the right decisions.

I ended up doing TAC, and only this week evidence was released saying that taxol might not give any benfit in the ER positive setting, which is what my consulting oncologist argued all along. How am I as a patient supposed to reconcile all this? How do I live without regret? How do I get rid of the nagging voice in the back of my head that tells me every day that I did the wrong thing, and that it might have cost me quality of life, or even life itself?

Sid Schwab said...

anonymous: reading your excellent comment literally made me tight in my gut. Your words are more connected to reality, in many ways, than my post (in which I did suggest it was a fantasyland.) You raise some very essential issues, ones to which I think there aren't perfect answers. When there are situations for which there are several solutions, there will be many opinions: some based on experience, some based on inexperince, some even based on self-interest (recommending an operation, for example, when it's not entirely clear it's necessary...)

You had many difficult decisions to make, in the face of conflicting information and recommendations. It probably could have gone on forever, without the "perfect" answer ever being perfectly clear. You made the decision you concluded was best at the time, after making an enormous effort; and that's all you could do. I hope you can trust your instincts at the time, and look forward.

Lynn Price said...

Ah, Sid, another post that just got filed into my writing folder under "Sid's Tomes." I'm in the middle of a chapter where a surgeon ends up doing exactly what you talked about...seeding a tumor into the bloodstream.

Boyo, is it possible for me to request blogs entries from you? If so, I'd love to know more about the hows and whys about tumor seeding.

Anonymous said...

This subject seems to be on everyone's mind. You and your readers might enjoy this:

And this discussion of the essay:

Howard Luks MD said...

Sid, Even as an Orthopod who doesn't deal with life and death decisions I preach the basic premise of your second opinion arguements to all of my residents who rotate in my office. My arguement centers around my concept of "lingering doubt." I will go as far as I can to be sure that the patient is completely satisfied that non-operative alternatives are either not working or not indicated. With considering big procedures such as a knee replacement and the patient asks if I'm sure this or that wouldn't work--- you can be sure that this and that (usually PT and/or a steroid injection) is attempted next. Any reasonable "lingering doubt" must be addressed. It makes dealing with an infected or painful post-operative patient a lot easier since we do not have to work through the "...I know I should have tried this first" stage.

Anonymous said...

I just found your blog and am really enjoying hearing your stories. I love my general surgeon, he doesn't have your sense of humor (which I get and enjoy) but he is great none the less.

After finding a growth in my leg which had already gotten to quiet a large size (at least 4-1/2" difference in the 2 legs) I was sent to a surgeon for removal. the interist made referral based on personal experience with the surgeon and I accepted that. The surgeon decided to perform an excisional biopsy first and told me "it will be like having a mole removed, no big deal. I agreed to schedule despite the fact that my daughter was getting married less that 2 wks later (bad choice!)
I arrived to find I would be under complete sedation (shock!)and came out with a 7" incision in my thigh w/15 staples. Quiet a large mole wouldn't you say.
Again, this was a large tumor so i tried to understand his explanation but when i asked about the upcoming surgery (after multiple infections)and what would be involved; Me: When I had the biopsy you indicated it would be like having a mole removed. Imagine my surprise when I came out of surgery to find 15 staples down my thigh" DR: "ok-well it was a big mole"
this was so not acceptable, so i looked for and found another general surgeon. I am so glad i did, he has been a saving grace in all of the madness lately. and despite the fact that he is an excellent surgeon and would have performed the next resection of recurrent tumor, he sent me (almost made me) go for 3 or more opinions just to help salvage my leg-what a person and one i am so thankful to be able to call my surgeon.


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