When a patient says "no thanks" to surgery

The Journal of the American Medical Association Internal Medicine has a really interesting essay they've published in full online. It's written by Anna Petroni, a 77-year-old California woman who recently decided against undergoing surgery on her ankles and knees to correct recurrent foot abscesses and arthritis. It's a short, simple piece — just Petroni recounting the story about why she made the decision she made — but serves as a jumping-off point, I think, for several different important discussions about the way we do medicine and the way we make medical decisions.

A couple of things particularly stood out to me. First is the relationships we have with doctors, especially specialists whom we see once or twice and who don't know us very well. Petroni's story suggests that bedside manner is about more than just making somebody feel nice — it can also affect their overall health if the doctor makes decisions related only to their specialty without taking into account the patient's whole story. The second thing I think is really important here is the idea of there often not really being one right answer when it comes to medical decisions. Doctors can say, "we can do this" or "we can fix that", but there's a responsibility on the patient (one we're not usually prepared for or coached through) to decide whether the trade-offs of intervention outweigh the side-effects. And those decisions can vary widely from patient to patient.

I guess I was so shocked when the orthopedist told me I needed to have 4 surgical procedures, I didn't even think about the fact that he did not ask about my cardiac history. But I sure did afterward. I only went in to have my tendons checked. He did not ask how I felt about anything. He just told me what needed to be done.

About a month later, I received a call from the receptionist who asked if I had decided on a date for surgery. I said that I had decided not to go ahead with it. When I feel I can no longer tolerate walking without tendon surgery, I will reconsider my options. Until then, I want to live the best I can with what mobility I have.

Read the rest

Image: 20090312 - Clint - foot x-ray - left ("good" foot), a Creative Commons Attribution Non-Commercial Share-Alike (2.0) image from clintjcl's photostream


  1. 15 years ago, I went to a back doctor to figure out why I had unbearable pain in my hips and, occasionally, shoulders.   An X-ray later revealed that I had bone spurs in my spinal column that were pinching the nerves.

    His response?  “You’ll have to have surgery now to fix this.” 

    I asked if (a) there was anything I could do and (b) if there was any harm in not having surgery.  His response was a resounding No to both.

    So, I decided to do a bit of research and live with the pain for as long as possible.   Research revealed that bone spurs are oft caused by a lack of calcium (among other things) and that I could mitigate the pain by losing a bit of weight and exercising to reduce inflammation.   There were also claims that cranberry juice + cider vinegar may help (I’m not much of one for woo claims, but it certainly couldn’t hurt).

    Nine months later I went back to the doctor largely pain free.  He didn’t believe I was pain free and I went through with another set of X-rays to see what was up.  Spurs gone.   Nerves unpinched.

    No surgery needed.  15 years later and I know that I need to not piss off my back by lifting things in stupid ways but, other than that, I’m fine.   An MRI did reveal that I have disc disease and, eventually, will probably have to have corrective surgery.  But my current doctor — I upgraded — is very much in the “do whatever you can to manage the pain and we’ll see how long we can avoid surgery, maybe forever”.

    1. I have an amazing family practice doc (amazing both in his personal relationship with my husband and I and in his general evidence-based awesomsauceness). I too had heard the “you’ll need surgery soon” from previous doctors about sciatica. When I took the sciatica to him, his response was to tell me about all the studies they kept having to stop mid stream because the control of moderate exercise worked better than  surgery, chiropractic, drugs, etc. He said, “So why don’t we try that?” 

      As long as I do some elliptical time every week, I don’t have problems. And I’ve not been laid up with it for a day in YEARS. 

    2. Dr. Stein: I know, it’s pretty gross. It could heal on its own, but I say we go in there Dr. Stein style and cut it out. I want to show these interns what the best doctor in Southern California can do!

    1. Older patients often go to surgery and come back missing hunks of their minds. Any nurse on a surgical floor could have told you that a century ago. At least now, patients are cognitively screened pre- and post-op for comparison.

  2. The other warning sign in this article, is the doc wanting to operate on both ankles and knees.  In my area, these are often separate specialties.  If someone says you really need surgery, getting a second or third opinion is often a great idea.  Even if the other docs agree you really need surgery, it wasn’t wasted time to give you peace of mind. 

      1. I suspect that, unlike tires, you’ll have trouble scoring a discount for doing four at once…

  3. This brief essay demonstrates a welcome bit of common sense on the part of the author. I worked for several years as an insurance defense attorney and was privy to the courses of treatment for various injuries and ailments. In some cases, minor and manageable problems were inadvertently turned into chronic conditions by treatments that over-promised and under-delivered. I think it’s important to remember that health care too is a field where it pays to be a cautious consumer and weigh the costs and benefits with the potential risks. It’s also interesting to watch people as they age and try to deny that, slowly but surely, our bodies start to give out on us. Collectively, I think Americans are in denial about their own mortality.

  4. I had a doctor laugh at me when I brought up a health concern.  He had a nice chuckle and said I was too young to worry about it. It was a little humiliating.  I decided to find a doctor who didn’t find my health amusing.

    The lesson I learned was: don’t be afraid to fire doctors who don’t take you seriously or treat you like an idiot.  We’ve been indoctrinated to think of doctors like gods or policemen, that we shouldn’t question them.  They are just people.  Sometimes douchey people.  Often good people who are simply wrong but cannot fathom it. I am not going to be the object of their life-lesson on humility.  Let them screw up somebody else.

  5. I refused carpal tunnel surgery in both wrists, and rehabilitated my condition myself over the course of four or five years by watching my ergnomics and using braces while sleeping and driving.  It took about six months to regain any feeling at all in my hands, but I’ve been fine for a decade or so now.  The doctors said my condition could not be cured without surgical intervention, but as a student of history I know better than to place blind trust in medical professionals.

    That being said, I also did not seek treatment for multiple broken bones in my feet, and when they healed everything solidified into rigid masses, which I would periodically break again in situations where an undamaged person’s foot would have just flexed.  That situation was finally fixed by a Rolfer, which was exceedingly painful!  I should have had the original breaks treated instead of ignoring them, but I was very young at the time.

    You have to actually think about it from your own perspective.  To a doctor – even a good doctor, who is doing his best – you are one fragment of his patient population.  From your own viewpoint you are 100% of the patient population, and you will always be in some ways more informed than any doctor; they cannot actually feel what you are feeling, and probably do not know anywhere near as much about your family’s medical history as you do. Trust your own judgement, and take responsibility for your decisions.

  6. Heh, this brings to mind the hilarious “There is a fracture. I need to fix it” video, at http://www.youtube.com/watch?v=3rTsvb2ef5k

    1. Oh, so true.  We had a physician do a total pelvic exenteration on a woman with almost no functioning systems.  When asked why he would do such a thing, he replied, “Her lesion is very operable.”  She spent about a year in the hospital post-op and died soon after.

  7. We just had an interesting hospital experience. My young and normally healthy husband underwent surgery for an aortic aneurysm  6 months ago due to genetic issue. He had a cardiac cath done the day before the surgery and they replaced a portion of his aorta and his aortic valve (went with mechanical, despite the lifelong requirement of coumadin).

    So six months later, he’s doing fine overall, but subject to wonky little things that come out of nowhere (visual disturbances, etc) and quickly and quietly resolve themselves. He had chest pain (not the typical heart attack type) last Friday and called his doctor, who recommended he call his cardiologist, who recommended he go to the ER to get examined, where they kept him overnight for observation.

    Before this turns into tl;dr, the ER docs had scheduled him Saturday morning for some wacky, super-industrial test (Lexiscan?) despite not finding anything else on the Xrays, lab tests, etc. The pain went away while he had been waiting in the ER as well. His cardiologist, bless him, came in on Saturday just before the test to check on him and laid into the attending doctors for ordering that instead of a regular stress test. He said, “he’s a normally healthy 42 y/o who just had a cardiac cath in December!”

    Anyway, with the whole living post-op heart surgery thing being new to us, we didn’t know what to say no to, but I’m really glad his cardiologist didn’t hesitate.

    1. I had an aortic angiogram for my gall bladder attack. Good times.

      Does your husband have Ehlers-Danlos?

      1. Surprisingly enough (or maybe not), they are thinking it’s Loeys-Dietz. His brother went through the same thing the year before but on an emergency basis (as in the “lucky to be alive” type of emergency) and they started genetic testing then. His brother has the classic look of someone with Marfan’s Syndrome, so they initially thought it was that. However, testing has come back pointing more towards Loeys-Dietz.

        1. Connective tissue disorders are a real treat. Always finding new symptoms.

  8. Thanks for posting this. Years ago I visited an orthopedist about an injury that had briefly dislocated my ankle. He said that he would “love” to operate on it and fix right up for me. After he found out that I was uninsured, he commented that since I probably didn’t have 20k lying around to spend on surgery, we would try putting it in a cast and seeing if time would help the tendons knit back together.

    Full recovery, no invasive surgery, no scars. $500 spent out of pocket on office visits and PT, total.

  9. My sister’s husband was admitted to a well known hospital.  After a day the doctors still had no idea what he had. My sister researched the symptoms and came up with disease XX that fitted the symptoms perfectly.  She presented XX to the doctors.  They said, “no, no, couldn’t be that, too rare”.  Meanwhile he rapidly declined. Sis tried again and again. A few days later he was near death and again Sis brought it up. Finally they gave him the standard treatment for XX and he nearly immediately became at least close to normal.

    A  few years before, a popular national politician, also was found to have XX. I bet the doctors didn’t avoid the treatment just because XX was rare. 

  10. I had occasional pain in my right foot a year or two ago. I went to a podiatrist and she took an x-ray and showed that that my one toe was slightly bigger than the others, and that there was a little space between the bone of the toe and the foot and the options were to do surgery to SHORTEN the bone or I could get some extra padding for my shoes near the toe for support. I went with the extra padding, but soon thereafter saw a orthopedic surgeon for a second opinion. He looked at my foot, tried to bend it back, saw that there was a lot of tension, and said simply that I needed to stretch more, that my achilles was too tight and that it was the thing causing me pain. So I did the stretches as recommended and haven’t had the pain since. And to think, that first doctor WANTED TO SHORTEN MY TOE!

  11. In my early twenties I had a broken collarbone. I went to the hospital and was released. I was told to go to the office of Dr. XX in two weeks.  I knew there’d be forms to fill out so I arrived 30 minutes early and had them filled out by the appointment time. TWO HOURS later my name was called (there were maybe 5 other people there, some just accompanying patients). I went in,  he took a look at the ORIGINAL x-rays, didn’t even look at my current collarbone, shook my KNEES and pronounced me OK.  They charged me $200 for that (this was the early 70s), not even an apology for my wasted time (probably didn’t even notice it).

  12. When I was a kid, my dentist told my father that I was going to have severe pain and even more complicated surgery within a year or two if I didn’t have two molars removed NOW.  Dad and I talked and decided to wait until I have indicators of pain coming.  Well, 50 years later, the molars have not been removed and I’ve had no significant pain. HAH!

    1.  I have a litmus test I use for any new dentist I visit (constantly changing insurance plus never finding “the one” has necessitated more changes than I’d like).  I’m 40, and I have all four of my wisdom teeth.  All four came in normally, and in the 20 or so years they’ve been there, I’ve had one cavity in one of them.  At least 3 out of 4 dentists I go to for the first time immediately recommend having them removed.  When I ask, “Is there anything wrong with them?” I usually get a slightly embarrassed “Well…no…mumble mumble” or “They usually cause problems, so most people have them taken out.”  Yeah, and most of the easily removed organs in my body might cause me problems some day–I think I’ll hold on to them until then.  I feel like I usually have an appropriate amount of trust in my doctors, but I find myself wanting to yell, “Yeah, you’re going to have to find another way to pay for your new in-ground pool, asshole!”

      1. That’s a pretty good test.  I have a couple chipped teeth that my current dentist hasn’t bothered with in the nearly 10 years he’s been my dentist, and one wisdom tooth that you can sorta see on full-head x-rays that he seems to have no interest in.  When the sad day comes that I have to find a new dentist, those two conditions will probably be my litmus test.

  13. Mom’s on Coumadin following a series of strokes.  Ultrasound imaging of her carotid arteries serendipitously revealed an asymptomatic thyroid nodule, which they wanted to biopsy because of possible malignancy.  They took her off the Coumadin in advance of the biopsy, and she had a transient ischemic attack within a couple days; they immediately put her back on the Coumadin.  At this point, the safest option is to monitor the nodule periodically.

    1. My friend’s (late) mother had a carotid TEA for “symptoms”. She got worse. Turned out that there was a brain tumor, which the increased blood flow fed beautifully.

  14. I had a gall bladder attack ten years ago.  Declined the recommended surgery.  Haven’t had another attack since then.

    The problem is that medicine has gone from health care professionals evaluating you and making a recommendation to Models of Care that say “If ____ Then ____.”  And the reason for that is that money (whether it be private insurance or the NHS budget) decides what care you get.  Models of Care, being essentially algorithms, are viewed by budget makers as more reliable cost containment and sold to health care professionals as superior care.

  15.  I’m glad you persisted and got the right treatment at last. My story is more or less the opposite of yours. The young NP I saw for unusual vaginal bleeding assured me it was normal because I was peri-menopausal. Come to find out a year later that it was uterine cancer…(surgery, chemo & radiation followed, but I’m asymptomatic nearly 10 years later, yeah!)

    1. tubcat: The most frustrating aspect of my experience was feeling like I had been presented with radical options (surgery) before a simpler treatment (oral medication) was explored. In the waiting period(no pun intended) I read a lot about endometrial  and uterine cancers, perimenopause, etc. I also joined a uterine cancer forum and saw a range of experiences, including what you have described. I now feel like women should get rounded up and shown some educational films at 35 regarding menopause, like when we were shown films about menstruation around the age of 11. My GP had pamphlets for Viagara in her waiting room, but no pamphlets about uterine cancer, which is COMMON.

      I felt like my GP was not as educated about this cancer as she should have been, and that the geezer gynecologist had the old school mentality of hysterectomy first, ask questions later. I also felt like my GP was somewhat dismissive about my menstrual horrors, as this was probably something she saw all the time, and treated the same way, all the time. My symptoms were scary and humiliating and should have been treated promptly. I mean, I liked being so pale that I nearly glowed, but the heart palpitations and exhaustion were really no fun.

  16. My daughter had a subtle, tiny torus fracture in her tibia when she was about 1.5 years old.  We went to a pediatric orthopedist with her x-rays.  Without any exam, he put them up on the light box and declared she would be in a cast for about 6 months.  Although I wanted the best treatment for my daughter, I also was considering how horrible it would be for a toddler to be in a leg cast for 6 months.  I asked what would happen if we didn’t cast it.  He looked shocked, “Well, I suppose it will heal up fine.”  He seemed very comfortable to not cast.  She was completely normal in two days.  Two months later we received the notice for services billed to our insurance.  $950 for surgery and casting!

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