Must a surgeon mention death as a complication?

Earlier, I wrote about the tragic case of a young girl in California who was declared brain dead after what most media sources called a tonsillectomy. In fact, the patient had a much more extensive procedure for treatment of obstructive sleep apnea. In addition to having her tonsils removed, she underwent an uvulopalatopharyngoplasty (UPPP) and resection (removal) of her inferior nasal turbinate bones.

As I stated before, I will not speculate on whether the surgery was indicated or why the patient died because none of the facts about those two aspects of the case have been disclosed.

Questions have arisen about the informed consent discussion that may have been held with the patient’s mother. We obviously do not know exactly what was said. However, some have wondered whether the possibility of death after this procedure was part of the consent process.

The mortality rates for a simple tonsillectomy range from about 1 in 10,000 to 1 in 35,000. For UPPP, the mortality rate for adults is generally quoted at 0.2% or 1 in 500. I was unable to find any information about the mortality rate for that operation in the pediatric age group.

The issue then is this: Must a surgeon mention death as a possible outcome after this type of surgery?

According to a medico-legal encyclopedia, the disclosure of risk depends on two general elements.

Would other doctors have disclosed the risk of death and would the patient (or family) have made a different decision if the risk of death had been discussed?

paper from Duke University states the following: “In fact, there is no dictum that death must be included among the risks of every surgical procedure; when the risk of death is so low as to be unexpected and highly improbable, including it may actually be misleading.”

What they mean is that patients could be unnecessarily dissuaded from agreeing to a procedure they really needed.

The authors of the Duke paper go on to say that the question of how high of a risk requires disclosure is debatable, “but it may range from any chance of death to about 0.1% risk as a reasonable threshold for inclusion.” Keep in mind that this is merely an opinion by three surgeons and a medical oncologist.

An informed consent guideline from Harvard says, “The type and the number of risks to be disclosed should depend on the significance the doctor’s patient would attach to such risks in deciding whether to consent to the procedure or treatment. (The court recognizes that such disclosure does not apply to all ‘remotely possibly risks of proposed treatment’ which may be ‘almost without limit.’)”

Dr. Erik J. Kezirian, a prominent expert in sleep apnea surgery, has information pertinent to this issue. The surgeon lists a number of complications related to UPPP including bleeding, infection, difficulty swallowing, tooth injury, and continued snoring. Notably absent is any mention of death.

I had always heard that adverse outcomes occurring less than 1% of the time need not be part of an informed consent discussion. Again, this is only an opinion. There is no agreed upon standard.

If a malpractice suit is filed, I doubt it will hinge on informed consent, but it is useful to discuss the topic.

What do you think about informed consent and the risk of death?

Disclaimer: I am not a lawyer and this is not legal advice.

“Skeptical Scalpel” is a surgeon blogs at his self-titled site, Skeptical Scalpel.

Comments are moderated before they are published. Please read the comment policy.

  • Patient Kit

    I’ve had three major surgeries in the last couple of years (all with zero complications, thankfully) and I swear that I don’t remember either of my surgeons talking to me about the risk of death. Maybe I was just in a state of shock while we were talking about and planning surgery and it was said but I just don’t remember.

    I remember my orthopedic surgeon telling me about the risk that the procedure might not work and might not return me to 100% full function (It did work. It’s like my Achilles tendon was never hanging on by a thread. Thanks Doc L!). I remember my GYN ONC telling me that it was possible that he would have to convert from robotic minimally invasive to conventional open surgery and that with cancer there are no guarantees. (A year later, I have a few dime-sized scars and I’m NED as of my last pelvic exam, blood tests and CT a few weeks ago. Thanks Doc G!)

    But I do not recall talking about the risk of death with my docs. That said, I did go into surgery knowing that there was a risk of death. So, maybe they did talk to me about it. Or maybe I assumed there is a risk with all surgery involving general anesthesia. I really don’t know. But I knew.

    • Skeptical Scalpel

      Thanks for commenting. I’m glad you are doing well. It’s well known that most patients don’t remember much about what was said during their informed consent even within 24 hours of the discussion.

      • Patient Kit

        Reading the other comments, I’m pretty sure that the possibility of death was mentioned in the consent forms I signed (and read) along with all the other risks like infection and blot clots. I don’t recall my docs mentioning the possibility of death aloud in our verbal discussions but they might have. Death was almost certainly mentioned in the written consent forms. I also think I already knew the risks from previous surgery. Maybe that’s why I don’t remember my more recent consent discussions with docs as vivid new info.

        Either way, I know that I did know before we went into the OR what the risks were. And going forward, I know that those risks exist to some degree for all surgical procedures, especially those requiring general anesthesia and longer times immobilized. I also know why they make me wear those vibrating boots and get me up and moving asap after surgery.

        I would bet that a lot of patients are in a dazed state of shock when signing those forms and many don’t actually “read” them or internalize what they read. So, it’s important for the verbal discussion to happen to the point where the doc knows that his patient does understand the risks. Those of us who have been through multiple procedures can streamline the consent discussions by telling our docs that we know the risks. But first-time surgery patients need the full discussion.

  • Suzi Q 38

    “Must a surgeon mention death as a complication?”

    YES.

    • Skeptical Scalpel

      May I ask why you feel so strongly about this? If I recall correctly, you have undergone many procedures. Have you ever declined to undergo a procedure you needed because death was mentioned as a possible outcome?

      • Suzi Q 38

        I think that there should be “full disclosure” with something as important as surgery.
        My GYN surgery was necessary to remove possible cancer. The doctor neglected to tell me that my cancer was so small that it might not have done anything for years, so technically, I had my uterus removed and there was no cancer found in my uterus. He also removed my ovaries, and there was a very small borderline proliferating tumor found in the left ovary. Again, not sure if it would have ever grown larger, but I guess I am happy to have that one out.
        The surgery itself had complications, which for me was a c-spine injury that did not exhibit symptoms until after my hysterectomy.
        The surgeon was so much in denial and very scared of a lawsuit, so he let it go for months before he finally wrote the order for a neurology referral. Then, he got his friend to stall even longer, until I overexerted myself on a vacation and could barely walk.
        They stalled me for a year and a half, and nearly made me a paraplegic or a quad. Nerve damage like this is permanent. I have been told by the doctors at the next teaching hospital, that my weakness is permanent because the surgeon and the original neurologist (at the same teaching hospital) delayed my care too long. Another neurosurgeon told me that it may have been the tube down my throat for my surgery. Maybe the anesthesiologist was too rough and it injured my c-spine.
        The doctors all are pointing fingers at each other, at this point. No one wanted to get me the right care, even when they suspected that something was truly wrong.

        I then had to have c-spine surgery in 2013. This surgery halted the progression of the weakness of my limbs, but left me with a myriad of neuropathies and generalized body and muscle pain.

        In other words, I wish he would have taken the time to discuss all complications with me. Maybe I should have avoided the surgery all together. He did not even take a scan.

        I read a story on Kevin’s Blog about a patient who went in for a hand surgery, I think. He died….maybe from the effects of the anesthesia, not sure.

        Another friend died from gall badder surgery.
        Her husband was so sure that this was a minor surgery, that he dropped her off at the hospital and took the kids to school. He stopped by the cafeteria to eat some breakfast, and she died of complications from her surgery.

        My point is that surgery is risky.
        Please let patients know if death is a possibility.
        Maybe they will “pass” on the surgery for now.

        • Skeptical Scalpel

          Thanks for the detailed comment. I didn’t want the post to be too long so I didn’t get into the area of “Maybe they will ‘pass’ on the surgery for now.” That’s a real problem. How many people will “pass” on surgery they really need because the risk of death is 1/10,000 (0.01%) for general anesthesia.

          While we are on the subject, would you have passed on your hysterectomy for cancer if someone had said the risk of a C-spine injury is 1 in 1 million cases (or possibly even less)? I’ve never heard of such an injury occurring before.

          • Patient Kit

            I can’t speak for Suzi but I can tell you that, knowing all the risks of surgery, I would not have put off having my hysterectomy “for now”. I wanted that thing that did turn out to be ovarian cancer out of me before it had a chance to take over. There would have also been very real risks to not doing the surgery and leaving the cancer there to watch and see whether it acted aggressively and grew. In the words of my wise GYN ONC “There are no guarantees.” and I agree with him.

            My surgery was also done minimally invasively with the DaVinci robot and I had zero complications. Excellent surgeon behind the robot and caring for me going forward. I have no regrets.

            Not sure what happened to Suzi or whether it was something specific to robotic surgery. Sounds like maybe some nerve compression related to position and length of time on the table? If so, that could happen in traditional open surgery too, couldn’t it?

            I take surgery very very seriously. But the risks/benefits have to be weighed carefully and in the context of the risks/benefits of NOT having the surgery.

          • Suzi Q 38

            Patient Kit,
            Thanks for your comment.
            Your first paragraph at least makes me feel better for my choice to have surgery. Most people would like to just get the cancer out.

            For me, the discovery of cancer in my left ovary was incidental to my surgery for suspected cancer. I did my research on the pathology results and realized that the tumor was borderline, and therefore of low malignant potential. After the surgery my doctor concurred with this. He wanted to have another surgery to remove some lymph nodes, just in case. I showed him several studies that suggested otherwise, that no surgery was necessary at this time.

            At any rate, I was bleeding three weeks out of every month before my hysterectomy. As a positive outcome, i no longer have this problem.

            “…….Not sure what happened to Suzi or whether it was something specific to robotic surgery. Sounds like maybe some nerve compression related to position and length of time on the table?…”

            Bingo. Getting GYN surgery as far as positioning on the operating table may be very different for the da Vinci robot vs. tradicional methods. I know that I was in a Trachenburg position. My pelvis legs were up higher than my head, so there was more opportunity for more pressure on my c spine. I think I was in the OR for four hours. I am not sure if they removed my from this awkward position at the earliest opportunity, or they took their time.

            “…. If so, that could happen in traditional open surgery too, couldn’t it?”

            Sure, but also, the da Vinci robot is relatively new, and not truly considered better than other methods for GYN surgery. It is costly to utilize and maintain. I was naiive to agree to the use of such without doing my research first.

            That being said, I am glad that your daVinci surgery went well.

          • Patient Kit

            Suzi,

            First, I’m really sorry that you’re going through serious nerve damage complications post-surgery. I hope it gets better for you over time.

            Re the Trendelenburg position, I guess I thought, since the position is much older than the daVinci robot, that that tilted position is used in most gynecological surgeries, not just robotic. I could be wrong about that. But that’s why I was wondering why you specifically blame the robot. I didn’t know that much about the robot before surgery either. But I had a good experience. Maybe I was lucky, but I credit my wonderful doc.

            I have since watched a 2-hour video of a real (not simulated) hysterectomy done using the robot on the website of a hospital in Iowa. My surgeon didn’t suggest doing that. I found the link on Hyster Sisters forum. I thought I would be squeamish watching a real surgery but I wasn’t at all. It was fascinating. I couldn’t stop watching it. I kinda wish I had watched it before my surgery.

            There is no doubt that it is really hard making the decision about what to do — surgery or no surgery — before getting a pathology report about what’s in there, but that’s what we both did.

          • Suzi Q 38

            Hi Patient Kit,

            I am glad that your surgery turned out well.
            As for me, I have permanent damage.

            Not everyone does well, so my suggestion is that people who have the luxury of time should do their research.

            Believe me, i am so happy that I am still walking, albeit more slowly and with far less stamina than I had prior to my surgery.

            Thanks also for your correct spelling of the Trendelenburg position! Honestly, I remember the name, but could not get the correct spelling down to memory.

            Apparently, it is the angle of the bed and the patient positioning that is in question.
            The angle for daVinci gyn surgeries is very steep, in comparison to the traditional surgeries.

            I copied the first article that I saw…I am sure there are others:

            http://contemporaryobgyn.modernmedicine.com/contemporary-obgyn/news/modernmedicine/modern-medicine-feature-articles/robotics-practice-new-angles

  • Robert Steed

    In 1988, following the death of a state senator who receive contrast as part of a procedure, the Georgia legislature passed a law requiring certain elements be included in informed consent.

    Short form:

    If a patient is to undergo a procedure involving general, spinal or major regional anesthesia, amniocentesis, or intravenous/intraductal contrast, the consent must describe a number of possible complications, including death.

    Long form: http://ga.elaws.us/law/section31-9-6.1

    • Skeptical Scalpel

      Robert, thanks for the information. I was not aware of it.

    • Suzi Q 38

      Thank you.
      The idea of disclosure in medical or surgical procedures is not so farfetched.
      A friend who works at a hospital was going to have knee surgery.
      He was joking a bit, but he said: ” I am going in the hospital to have knee surgery as an outpatient. If I don’t make it, it was nice knowing you….”

  • http://batman-news.com David H

    States have the right to require certain language in consent forms. Here’s the language for Texas:
    Just as there may be risks and hazards in continuing my present condition without treatment, there are also risks and hazards related to the performance of the surgical, medical and/or diagnostic procedures planned for me. I (we) realize that common to surgical, medical, and/or diagnostic procedures is the potential for infection, blood clots in veins and lungs, hemorrhage, allergic reactions, and even death. I (we) also realize that the following risks and hazards may occur in connection with this particular procedure:

    From here: http://www.dshs.state.tx.us/HFP/apps.shtm#disclosureandconsent

    • guest

      I live in Texas, and I remember risk of death being in the informed consent I signed before a tonsillectomy. Interesting, I didn’t realize it was a law.

      I don’t remember the surgeon mentioning risk of death, and that’s fine because I can read. I don’t think knowing there’s a risk of death associated with routine procedures dissuades most people from having the procedure. I think, generally, people (rational people, anyway) know that everything in medicine carries risk (medications, procedures, etc). I think it’s important to inform people about the most serious risks (even if rare) and the most common complications you see.

    • dontdoitagain

      It would be nice to know what the chances of the complications are, not that anybody would be truthful about it. In my experience the doctor mentioned “possible nerve damage” in an offhand way. What he did NOT reveal was that with this particular surgery it wasn’t just “possible” but was highly likely. Almost 100% likely. I signed up for “possible nerve damage” with the idea that my surgeon was well trained, experienced and careful. That’s not what happened and it wasn’t what I was told.

  • DeceasedMD1

    When they ask if you want an advanced directive, that’s always a hint…

    • dontdoitagain

      What they seem to be saying to me is “If we screw up badly, do we really, REALLY have to try to save you?” After all they are telling me that the procedure has very little risk, and I will be saved/restored by their prescribed intervention… So why else would they want an advance directive?

      • DeceasedMD1

        LOL. You have to wonder.

  • Sherene

    Absolutely. If it is a possibility, parents deserve to know. Of course it’s a possibility with any surgery but sometimes parents don’t realize this.

  • Thomas D Guastavino

    When in doubt, CYA.

  • http://www.esseinstitute.com drseno

    Thank you for the questions in this compelling piece. ss. Three thoughts came to mind when reading this: Death is always a possibility and we’re pretty squeamish about saying so. But that can be remedied in a few ways (and should be) because it’s not fair or beneficial to those concerned when the physician holds information out.

    Is telling people about the risk of death misleading if you’re honest in your appraisal, and if you include the family ‘awareness’ of how things are generally going too? In other words wouldn’t having a conversation with them as equally aware (of their own important mind and gut change the way we all view a situation — bring in more into a whole?

    It seems to me that patients are far more often misled into treatments that they do not need than they are to decide against a surgery they really need. The idea that patients could be unnecessarily dissuaded from agreeing to a procedure they really needed is so clinician centered it ought to be flipped on it’s head. People know a lot more about themselves than we think they do. We should ask them questions like “What’s foremost in your mind about this?” and then listen because there’s something in their answer that matters.

    Lastly, one thing you could add to comfort your patients while giving them the information they need is: “We support all our patients and the surgical team to do better by using the Surgical Safety Check List” This results in prevention of even little errors and also of death (though it’s highly unlikely in this case).

    How’s that for a good thing to say?

    Good discussion! Thanks for bringing it up, ss!

  • Skeptical Scalpel

    Some of these comments are quite valid if you assume that every patient is an intelligent, perfectly logical thinker. If you are intelligent and rational, you probably already know that death during any operation is possible

    Not all patients are intelligent, rational, or capable of understanding the nuances of a mortality rate of 1/10,000. I have had patients who with sepsis and peritonitis balk at signing the consent form when the issue of death is raised. They failed to appreciate that their disease could kill them without the surgery. I know someone (who likely has not dealt with patients) will say I didn’t explain it well enough. Baloney.

    Have you ever tried to explain the possibility of a common bile duct injury to a patient who can even read? They glaze over, and in my opinion haven’t the slightest understanding of what the implications are, even though I tell them..

    • guest

      I understand what you’re saying, and I cannot imagine how frustrating it would be to have someone refuse what may be a life saving procedure. I don’t think the answer, though, is to withhold information from everyone just because some people are irrational and/or not very bright. I think if you’ve informed patients of the risks and tried to do so at that patient’s level of understanding, then you’ve done the right thing.
      Easy for me to say, when I’m not the one left watching someone die who could have been saved. But, I think we have to draw the line somewhere, and I draw the line in favor of providing information.

      • Skeptical Scalpel

        I appreciate your point of view. Another option if I sensed that a patient either didn’t want to hear all the potential complications or would be confused by such a discussion was to tell the patient the bare essentials and go into more detail with the family. By the way, if a patient dies after surgery and the family was not aware that such an outcome was possible, having informed only the now deceased patient about it does not help one explain things. I learned that very early in my career.

        • guest

          I think you’re handling it exactly right. If you attempt to inform a patient, and the patient doesn’t want to hear it, then you did your part.

          • http://www.esseinstitute.com drseno

            Incorrect in a big way. Doing ones job includes telling patients in ways that they can understand. If the doc can’t do it — get a nurse to facilitate the conversation. They’re better at communicating with patients anyway.

          • guest

            If a patient has thrown up her hands and said I don’t care about any of that where do I sign, then I don’t think the physician should have to continue going through all the potential complications when the patient has said she doesn’t care about hearing it. The patient is giving permission to stop. It’s the same with the informed consent document – some patients read it, some don’t. We make it available to read, but we don’t make them read it if they don’t want to read it.

            I think it’s important to discuss the potential risks in a way that the patient can understand, but if a patient says enough all ready let’s get going then I think it’s ok to do that

          • dontdoitagain

            The informed consent? You mean that hold harmless agreement that states that everything has been explained, understood and accepted? The one without a shred of evidence that anything at all has been explained and/or accepted? That one?

            Most medical people do NOT adhere to the law as it pertains to informed consent. If you really read the informed consent you will see a clause or two which pertains to how the doctor can decide to do whatever they want to you. This upends the whole idea of informed consent. With the insertion of that phrase/phrases, the whole point of informed consent has been made moot and it has becomes simply a hold harmless agreement.

            In defense of medical people, I have been told on numerous occasions that *I* am the only person who has ever questioned the hold harmless document and/or stricken certain clauses with which I do not agree. They say it just never happens, that the nebulous “others” ALWAYS, ALWAYS just sign away their rights. if that is true then patients themselves are partly to blame for the lack of information and the fake informed consent.

        • DeceasedMD1

          I get the gist in CorpMed land, informed consent can be rather rushed and less informed than it use to be. I also would not be surprised if parts of conversations that are crucial face to face with a doctor, will become a video explaining risks. Even just surgeons giving out DVD’s from medical device manufacturers, I personally find disturbing. I am noticing in general-not necessarily surgery- more videos and “educational” consumerism taking over what use to be called communication.

    • EmilyAnon

      If I am in a medical situation where I don’t understand something, I want to be guided by my doctor. So if I were to ask “if you were in my shoes, would you have this operation” would you be comfortable answering that question?

      • Skeptical Scalpel

        Absolutely. I have been asked that (or another version such as “If this was your wife, would you have the surgery?”) many times.

    • guest

      I work with a largely medicare/medicaid/no pay population at my hospital. A large proportion do not speak English and have a different perspective regarding medical care. I have no doubt many surgeons have glossed over death as a risk. Or, they told patients and families death was a risk, but remote, which is true. I totally understand where you are coming from.

    • Suzi Q 38

      Dr. Scalpel,

      You may run into a patient who can not read, but that would be rare. Many of us are educated and/or are intelligent enough to read a package insert for any given medication or an article in a medical journal.
      If the patient can not read, and is illiterate and has never gone to school, it is time to CYA and enlist the help of a patient advocate or educated family member.

    • Suzi Q 38

      That would be true for that patient.

      I, on the other hand, would understand how deadly septicemia and peritonitis is.

  • Gaspere (Gus) Geraci

    There have been lawsuits won because a particular possible morbidity was not mentioned. “If the doctor had only told me that could happen, I would never have done it.” My informed consent in the office (I’m not a surgeon, but did office minor procedures) consisted of: “The most common complications of what I am about to do are infection, bleeding, unexpected discomfort, and more than expected scarring. However, any procedure has risks, even in an office setting, up to and including death, from a reaction to the local anesthetic, for example. So if anything that you can imagine would prevent you from having this because it might happen, please let me know and we can discuss it and make a decision about proceeding.” Death and disability are always possible morbidities from any medical intervention, and so should be mentioned, IMHO, and then when available, the probability listed. If not, you are subject to, “They never told me THAT could happen.”

    • Patient Kit

      Aren’t surgeries done in office settings even riskier than an OR setting, in some ways, because there are no emergency crash carts/teams or anesthesiologists nearby if something does go wrong?

  • guest

    It goes back to the Nuremberg Code. We decided as a society that the ethical thing to do is to inform patients of the risks of treatment.

  • JR

    18 deaths over 20 years caused this regulation about child’s wear and draw strings:

    http://www.cpsc.gov/en/Business–Manufacturing/Business-Education/Business-Guidance/Drawstrings-in-Childrens-Upper-Outerwear/

    In order to take your child home from a hospital in my area, you must attend a class and be certified in “how to install a car seat in your car” as well as having your car and car seat inspected.

    Surgery can be beneficial in necessary situations, but I’m surprised how casually many people (patients and providers) approach it.

  • buzzkillerjsmith

    You’re right. A 0.9% risk of death is plenty high enough to be discussed.

  • Suzi Q 38

    True.
    You make a very good argument.
    I would have a higher chance of dying in a car or bus accident of course. I ride both, including the trains.
    AS far as taxis, I have gotten into a few of them and deemed the driver too manic or intoxicated from drugs or alcohol. Once, I told the driver to “Stop” and we got off at the next light. He was driving too erratically. I had about 3 other business colleagues with me, all of them male, who were too timid to demand this of the driver.

    I already know that this is dangerous, as is walking in the street.
    The difference is that we are giving up our bodies to the surgeon and medical staff in the most vulnerable way. We are asleep, under anesthesia,
    where any number of things could happen, and we would not be the wiser.

    When I am using various methods of transportation, which with your information has a much higher percentage of death, I am at least awake and can make informed decisions to help myself increase the odds of my making it through the ride.

    Also, some studies, based on who conducts them, pays for them, and who has the agenda that they want to promote, may have skewed outcomes that favor a certain party.

    Moreover, dying is not the only concern. Major injury or loss of mobility for life could be another.
    In some cases, the outcome is so bad that dying wouldn’t have been so bad after all.

    I say if the risk is so low for surgery, you can still explain it to me, if you are the surgeon cutting into me, or if you are the anesthesiologist putting me asleep.

  • Skeptical Scalpel

    A consent discussion is not a static thing. There’s a big difference between a 30 year old healthy woman having a breast biopsy where the risk of death is miniscule and entirely anesthesia-related vs. the risk of a 75 year old man with multiple co-morbidities having an emergency colon resection. Obviously, every surgeon will mention the risk of death in the latter case.

    I don’t how your reference to statins is pertinent. The
    landscape is changing. Doctors are not supposed to give statins for MI prevention to patients with low risk. The idea of getting everyone to have a normal cholesterol is no longer a goal. The risk of harms from statins may outweigh any potential good. [http://www.thennt.com/nnt/statins-for-heart-disease-prevention-without-prior-heart-disease/]

    From the Duke paper as stated above, “In fact, there
    is no dictum that death must be included among the risks of every surgical procedure; when the risk of death is so low as to be unexpected and highly
    improbable, including it may actually be misleading.”

  • Skeptical Scalpel

    I apologize for the erroneous link. Here is the correct one: http://omicsgroup.org/journals/2165-7386/2165-7386-2-108.php?aid=4847.

    You must scroll down the page to find the quotation I cited.

  • Suzi Q 38

    This is a story about a 4 1/2 year old boy who had two routine surgeries, but through a series of miscommunication, medical errors, and the like..ended up dead.
    When it is your loved one, or someone you know, the low incidence of mortality after a surgery means very little.

    http://secure.quantiamd.com/player/yaxmasmqp?u=wvhghifce

    • Skeptical Scalpel

      This case has nothing to do with whether or not death was mentioned as part of the informed consent. Had death been mentioned, would the mom have not let the child have the operation? I doubt it, as she seems to have believed the surgeon regarding the need for and extent of the surgery. He would have said the risk is very low, which is true.

      • Suzi Q 38

        True.
        This just teaches me that it is rare that a surgery is easy to recover from for the patient. Of course, the surgeon may have a different opinion. There can be several unforeseen events, aside and in addition to the surgery itself than can change an expected good outcome.
        I can not speak for this mother. Had death been mentioned as a possibility, would have made me consider this surgery non life threatening, and therefore worthy of taking more time to get additional information or opinions in order to make the best informed decision.
        Also, if your gut feeling says this is not going well…It is time to demand a patient advocate or nurse navigator to assist or facilitate the best possible treatment.

        i learned from her experience.

  • Suzi Q 38

    A couple of my doctors didn’t listen to me, either. They thought I was a hypochondriac, made hysterical by the fact that I had just had a hysterectomy.

    In my personal case, I had complications after my hysterectomy, which started out as puzzling and annoying, then gradually escalating to probable paralysis of my legs or worse (quad).

    I reported this many times. My own gyn/surgeon, who did not want to hear that this could have been as a result of the surgery, asked me to “wait and see,” rather than go quickly like I was supposed to to a neurology consult….then his friend from undergrad college was the neuro at the same hospital….he stalled me as well, saying that my lumbar looked a little swollen, but that was it.
    He neglected to ask for an MRI of my thoracic and c-spine, even though PT thought it would be a good idea.

    Also, my bowel and urinary function were affected. They simply asked me to wait a little longer to get me a urologist and a gastro.
    You would think that with the addition of those TWO specialists, they would think something was wrong.

    It turned out to be my c-spine. It had severe stenosis. If I didn’t have the c-spine surgery ASAP, I could easily have been a quadriplegic with the next fall.

    Thank goodness I “bailed” on the first hospital and went to a different one. I had to “cut” my losses…quit going “to the well” when no one wanted to “hear” it.

    The problem at the new hospital is that it takes so long to get in to see specialists. You have to start all over. By the time you get in, you could be a lot worse off.

    If you feel you are really sick, just go to the emergency room until someone believes you.

    By the time I got to the second hospital, I had to get in the neurosurgeon’s face a bit.

    He wasn’t so sure if this was a mechanical injury, MS, or TM. I had to see another MS specialist,
    For whatever reason, I got the most famous one, and he was booked for two months. I tried to wait, but I finally told the nurse that I would settle for his fellow MS neurologist. More time, on top of the wasted time at the first hospital.

    I realized the first two doctors at the first hospital were scared that this would turn into a lawsuit.
    This is why they were “masters” at the “let’s wait and see” game. I am sure they learn this from their friends in medical school.

    Anyway, at the first hospital the “run around” stopped the minute I got the nurse navigators involved. The patient advocate was a “joke.” She was this 23 year-old, fresh out of college. She did not know how to complain or reprimand anyone, much less a doctor or other hospital personnel.

    Maybe they are different at different hospitals.
    If your advocate doesn’t help you immediately, try the nurse navigator.
    If both fail, get out of that hospital ASAP.

    Do not “badmouth” the first hospital, or they might not want to help you. Just focus on getting yourself or your loved one the proper care.

    You can always complain to your insurance carrier, the patient advocate, the CEO, and the state medical board later, Press Ganey and the Joint Commission, if justified.

  • katerinahurd

    Do you think that if you know that death would occur as direct result of a surgical medical intervention, it would be inhumane and unethical to operate on a patient? Do you believe that attached full disclosure to an informed consent must always be required when the patient is a minor? Are you referring to the death of the 13 year old McMath girl?

  • dontdoitagain

    People who ride in busses and taxis are well aware of the risk. It’s out in the open for all to see. The risk of medical care is shrouded in secrecy. We only hear about the big medical settlements for stupid stuff, but never about the risks of the SPECIFIC medical intervention, even if death is probable and preventable by not having the intervention. The non disclosure that is a part of medical settlements means that the public never truly understands the risk.

    I think medical care with its 300,000 people per year HARMED by iatrogenic care and the additional 98,000 per year iatrogenic deaths is something that patients should be aware of. How many people know when they step into the personal conveyance that the chance of getting into an accident are there? My guess, all of them. How many people know the above stats?