tag:blogger.com,1999:blog-32053362.post6273270829622271674..comments2024-03-26T00:25:34.026-04:00Comments on Not Running a Hospital: A painful storyPaul Levyhttp://www.blogger.com/profile/17065446378970179507noreply@blogger.comBlogger34125tag:blogger.com,1999:blog-32053362.post-89516821751969475692010-05-12T07:06:34.318-04:002010-05-12T07:06:34.318-04:00The family in the case is talking with the leaders...The family in the case is talking with the leadership of the health center. I have no role in the case, and it would not have been appropriate for me to talk to the doctor.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-54314133313482714212010-05-12T07:02:57.802-04:002010-05-12T07:02:57.802-04:00Our rabbis teach us to always assume best intentio...Our rabbis teach us to always assume best intentions. Have you talked directly to the doctor who allegedly gave the inaccurate assessment? Did he offer any explanation? Does he need further education about biopsy recovery times and where to look up or call for the status of the clinical trial's accrual? What exactly what his motivation -- from his POV?<br /><br />One should also consider that studies have shown that cancer patients retain less than 20% of what is told them at initial consultations, and often that is mis-remembered.<br /><br />So, yes, I think you were harsh in assuming the worst possible explanation (financial gain) is the answer here. And even if the problem is simply an undereducated physician, you've missed the opportunity to educate the doctor and hopefully prevent such misguided advice again. <br /><br />Thanks for keeping this blog.reddhttp://redrover112233@hotmail.comnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-81526312576828279752010-05-06T23:47:29.070-04:002010-05-06T23:47:29.070-04:00The funny thing about second opinions -- people ch...The funny thing about second opinions -- people choose the one they want to hear. Physcians are human - who knows what to believe? How would any person know which path to take? We are told leading academic centers know all, but there are plenty of great docs at community hospitals.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-37845474200290960542010-05-06T23:04:01.266-04:002010-05-06T23:04:01.266-04:00This hits close to home for me. While I am not a c...This hits close to home for me. While I am not a cancer patient, I have a rare disease that is both disabling and potentially life threatening. Because every doctor who specializes in this disease is also a "researcher," my odyssey of seeking treatment has been filled with doctors demanding, directly or not, that I be a data source for whatever study they are doing as a condition of treatment -- and that treatment recommendations are driven more by having "pure" research than what is best for me. One longs for a honest broker. It makes what should be a cooperative relationship in a very difficult situation an adversarial one. Bottom line, there is a conflict of interest in being both a personal physician and being a researcher. <br /><br />The sad truth, from my perspective is that the drive for "pure" research has killed much of what is true learning in the medical profession. Researchers look for hard lab results, and meeting of algorithms, to prove a point. Doctors listen to symptoms to find a solution -- and what is a good solution is inherently subjectively defined - from the patient's perspective, not the doctor's. And finding that solution takes listening, communicating well and strong analytic skills. <br /><br />What that doctor did was wrong. The patient had a right to understand his options, even if some of those options are not what the doctor in questions would have recommended. The doctor certainly had the obligation not to use high pressure sales techniques -- both legally and morally.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-41115225788318339312010-05-06T18:17:17.880-04:002010-05-06T18:17:17.880-04:00Reminds me of sales tactics - imply a shortage, a ...Reminds me of sales tactics - imply a shortage, a defined window of opportunity that is quickly closing - close the sale. Not acceptable in medicine - at any time for any reason.<br /><br />This should be investigated, certainly - but given the protection that the medical professionals confer upon their brethren, I'm not at all confident that such an investigation would yield the truth.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-13281229087827073602010-05-06T16:43:13.173-04:002010-05-06T16:43:13.173-04:00As a member of the clinical research community her...As a member of the clinical research community here at BIDMC, stories like these remind me of why we have our safety mechanisms in place every step of the way, from the astute nurses at the Clinical Research Center to the assiduous members at our Institutional Review Board. No wonder our hospital is regarded as a top research hospital!Briannoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-86999930504767396292010-05-06T16:10:34.519-04:002010-05-06T16:10:34.519-04:00Derrrrr - are you truly being naive? As someone w...Derrrrr - are you truly being naive? As someone who has worked the hospital op trenches for my entire career, I've seen the good, the bad and the ugly. The hospital industry has 8 million stories like this - this is just one of them.Unknownhttps://www.blogger.com/profile/16518522588732420586noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-43294093128756384372010-05-06T14:45:10.284-04:002010-05-06T14:45:10.284-04:00I am sorry for your friend and for you. Hopefully...I am sorry for your friend and for you. Hopefully your friend will have many good and full days and will suffer as little as is possible.<br /><br />Your narrative does make it appear that there was a violation of informed consent. There are federal regulations that address this (http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm#46.116)and the consent, as presented, seems to have "missed the mark" : "(4) A disclosure of appropriate alternative procedures or courses of treatment, if any, that might be advantageous to the subject". <br />It is better to look at the cup as half full.76 Degrees in San Diegohttps://www.blogger.com/profile/14358630186174729315noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-50151536978950502362010-05-06T14:03:35.326-04:002010-05-06T14:03:35.326-04:00In two letters
NOIn two letters<br /><br />NOAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-56866379156148018462010-05-06T13:26:14.298-04:002010-05-06T13:26:14.298-04:00The variability in medical practice from one MD to...The variability in medical practice from one MD to the other is very real and like e-Patient Dave says is why you should always get a second opinion. I have heard countless stories from friends and colleagues that are similiar to the one that Paul described in this post. And it doesn't have to be a life threatening situation either for a second opinion. Sometimes a different techinque or a different philosophy can have a huge impact on how quickly you recover from surgery or how effectively your pain is managed. Doctors are good, smart people with all the best intentions but they are human and as such, bring their biases to the exam room too.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-80998285066427433732010-05-06T13:03:57.448-04:002010-05-06T13:03:57.448-04:00From Anon 12:11 again:
Sorry, I've missed ano...From Anon 12:11 again:<br /><br />Sorry, I've missed another one -- if they did not inform him at all (did they?) that there was an option of biopsy to check his genotype, that's probably malpractice or close to it.<br /><br />Still, there is a fair chance that "intentionally put one its patients at risk" is an overstatement -- they may believe in their approach, and they might even be right about it, nobody knows yet, of course.<br /><br />The 10-15% is just taking your 17% figure of the "lucky" genotype and then being very optimistic about the success of the treatment itself -- I was talking about overall chances before biopsy results.<br /><br />Oh, and people's hatred can be wonderfully misdirected -- you don't need me to tell you that.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-64096493118986899562010-05-06T12:43:59.638-04:002010-05-06T12:43:59.638-04:00Dear Anon 12:11,
Believe me, patients calculate t...Dear Anon 12:11,<br /><br />Believe me, patients calculate that risk and still decide to take the chance if they have one...Istvannoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-12303843814881088032010-05-06T12:25:22.991-04:002010-05-06T12:25:22.991-04:00Dear anon 12:11,
Please know that I offered no me...Dear anon 12:11,<br /><br />Please know that I offered no medical advice in this situation. I am not a doctor.<br /><br />From what I was told, the advice he received from the Boston doctors was that the biopsy was well worth the calculated risk. If it was not the right tumor, the delay in his particular case would be unlikely to make a difference in his prognosis.<br /><br />They also would have disagreed with you about the 10-15% chance of success with the "lucky" genotype -- but I am not qualified to question either you or them on that point.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-148772867434213692010-05-06T12:16:08.136-04:002010-05-06T12:16:08.136-04:00Unfortunately this is not a Stephen King novel, th...Unfortunately this is not a Stephen King novel, this is very much reality, which can happen anywhere. The problem is usually that people don’t believe this until they see one personally. <br /><br />I don’t know which is worse for a doctor, greed or lack of knowledge…<br /><br />To know the right people or rather to be lucky enough to know the right people is one of the most important factors. But also the courage to go further seeking the best individual treatment option is an invaluable personal resource in such cases. Support groups are great help in this.Istvannoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-74446547908533821712010-05-06T12:11:10.216-04:002010-05-06T12:11:10.216-04:00Answering your question -- yes, you very well migh...Answering your question -- yes, you very well might be. <br /><br />The only real problem may be in the apparent discrepancy between "very few slots left" and "not at all fully subscribed", but both are qualitative estimates. If the trial was, say, 75% full, both statements apply. <br /><br />All the rest is just emotions guided by the outcome. After reading your stirring description people tend to forget that apriori there was about 10-15% chance for this lucky outcome.<br /><br />Another (not at all remote) possibility would be that your friend comes to Boston, has his biopsy, discovers that he is out of luck, goes home, waits for a month, qualifies for the trial after a major hassle, sees some improvement in his condition and then dies, since he started therapy too late. His family hates you for the rest of your life.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-71707776982239187222010-05-06T11:43:10.570-04:002010-05-06T11:43:10.570-04:00No, you are not being unfair. Of course it is not...No, you are not being unfair. Of course it is not illegal for an MD to encourage his patient to enter a study but the failure to be open, and the use of coercion is not just unethical, it is illegal. <br /> <br />If I were this patient, I would report this episode to the sponsor of the study so that this physician can be watched closely or be removed as an investigator. I suspect that this episode is neither the first nor the only instance of this behavior and reporting this is a step toward protecting other patients when in their most vulnerable state.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-2088090295612473622010-05-06T11:31:35.223-04:002010-05-06T11:31:35.223-04:00This certainly sounds like questionable behavior f...This certainly sounds like questionable behavior from the local doc, though to be fair, that particular site may have been near to full enrollment, while the overall trial may still have been under-enrolled. When approving clinical trials, the FDA places strict limits on enrollment (by site), and any deviation can result in a trial being shut down. <br /><br />Another factor to consider is the large burden places on clinical sites due to, in many cases, almost unreasonable enrollment criteria. I've seen a number of trials nearly sunk by either poor planning by the trial sponsor or unnecessary restrictions placed on enrollment by the FDA (such as prior procedures and existing conditions), resulting in investigators struggling to enroll any patients at all. This in no way excuses the reckless behavior of the local doctor, but should be considered as a potential source of such conflict. By reducing the instance of difficult-to-satisfy enrollment criteria (either by sponsor mismanagement or FDA heavy-handedness), the temptation for doctors to engage in such behavior is minimized.JClev19https://www.blogger.com/profile/08298247162535605168noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-18674163529485962802010-05-06T09:58:41.588-04:002010-05-06T09:58:41.588-04:00As a locl community Doctor, I encourage my patient...As a locl community Doctor, I encourage my patients to seek second opinions in serious cases, especially something like lung cancer in a non smoker.<br /><br />The inconvenient lie about the trial being almost filled destroys any credibility of the local doc. There is no way that can be misinterpreted.<br /><br />I don't think you are being too harsh, I think you are right on. This doc is an embarassment to the profession and should be reported to the IRB, hospital, and state board.<br /><br />This behavior happens in both the local community hospitals and the big university hospitalsChrisnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-82658834132279103322010-05-06T09:30:01.062-04:002010-05-06T09:30:01.062-04:00Transferred from Facebook:
Nancy: This is almost ...Transferred from Facebook:<br /><br />Nancy: This is almost like the story of who gets convicted and who doesn't. If you have enough resources your outcome will be very different from those who don't. I think we ALL agree that his VERY well known local cancer center was only looking out for themselves and if he had a death sentence it didn't matter.<br /><br />Ann: This is unreal, almost like reading a Stephen King novel.<br /><br />Kasey: As someone working in cancer clinical trials (at BIDMC) I know it can be tough to enroll and find patients willing to take "cocktails of chemotherapy agents" as you put it. But when thinking about clinical trials for patients you *always* have to think about what's best for the patient. That's what I love about working with oncologists here.<br /><br />I hate to think that this non-Boston medical practice wasn't putting the patient first, but that's the way it sounds.<br /><br />Thomas: We had a very similar story with my Dad. Our local doc said there was no reason to see any one else and that the trial we investigated was closed. We ended up going to Boston where he received extraordinary treatment, enrolled in the trial (which was still open), and was given at least a shot at life. The local doctor had just written him off. So sad to [hear] these stories.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-5155164432169797552010-05-06T09:24:34.248-04:002010-05-06T09:24:34.248-04:00You are in no way unfair in your characterization....You are in no way unfair in your characterization. I see more than a few clinicians put their research goals ahead of the patient and the organization that supports them. It is unfortunate and as your title says, painful.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-39050984679193174052010-05-06T09:17:12.110-04:002010-05-06T09:17:12.110-04:00I was also going to post that it's a good exam...I was also going to post that it's a good example of why people should get second opinions. It's possible that the doctor thought he was doing his patient a favor by enrolling him in the trial (though there is that little inconvenient lie about the trial being nearly full). In my opinion, his big mistake was not sending the patient to a specialist - for not suggesting a second opinion himself. Whether because of greed or lack of knowledge, the doc was clearly in over his head and didn't even know it. <br /><br />This is an ugly story with a great outcome. I hope your friend continues to thrive for a long time.ebahttps://www.blogger.com/profile/13279245315781866184noreply@blogger.comtag:blogger.com,1999:blog-32053362.post-9748736049058519262010-05-06T08:30:39.011-04:002010-05-06T08:30:39.011-04:00I think I side with the "not enough informati...I think I side with the "not enough information" group. The doctors in the first hospital may NOT have known the status of that first trial. I certainly hope this is the case. If not . . . ugh!<br /><br />However, I am also a firm believer in taking ownership of one's own health . . . True, knowing the right people is a factor here, but so is the decision to seek other opinions and make an informed decision. <br /><br />I have a brilliant family doc who takes the stance that the patient is the responsible individual here and that he or she needs the best information to make that informed decision. I believe that all too often people rely TOO HEAVILY on the judgement of one person, be it a doctor or a home remodeling service.Benj Kantershttp://www.HearTomorrow.orgnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-547960554806667002010-05-06T08:17:39.444-04:002010-05-06T08:17:39.444-04:00Certainly not too harsh... and I think you know th...Certainly not too harsh... and I think you know that. <br /><br />I concur with Dave's comments re: reporting this to the medical board for evaluation.Howard Lukshttp://www.hjluks.posterous.comnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-33728129506944671202010-05-06T08:17:39.443-04:002010-05-06T08:17:39.443-04:00I think this is an example of a larger problem in ...I think this is an example of a larger problem in medicine, where subtle (and not-so-subtle) coercion is used to get patients to consent.<br /><br />If a clinician gets a benefit based on the number of patients that sign up for a clinical trial, or have surgery, there is no way that person can be completely unbiased. The clinician needs to at least be aware of this when talking to patients.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-32053362.post-50444189791333230982010-05-06T08:07:43.172-04:002010-05-06T08:07:43.172-04:00Paul,
No, you are not unfair. Unfortunately, this...Paul,<br /><br />No, you are not unfair. Unfortunately, this is not a unique case. The extremely competitive environment of cancer research, the financial “pressure” from drug companies and hospitals has caused this type of deviation in treatment. Among others this is one of the biggest reasons why second and third opinion is highly recommended in every tumor diagnosis.Istvannoreply@blogger.com