Patient + Internet = Jet Pilot?

Posted by on Aug 22, 2014 in Education, General Medicine | 40 comments

Patient + Internet = Jet Pilot?

Not long ago I flew to Europe for a meeting. The evening before the flight, just to be cautious, I used Google to read up on the aircraft, an Airbus A330-200 medium wide-body, twin-engine jet.  I reviewed basic statistics, its safety record and, of course, emergency procedures. I am not a pilot, just an old Boy Scout; it pays to be prepared.  Boy, was I right.

Three hours into the journey, 38,000 feet over the Atlantic, 240 miles south of Greenland, we were slammed.  The plane began bucking, jumping up and down and swinging wildly from starboard to port. Debris filled the cabin air.  The fasten-seat-belt signs turned on and the attendants screamed to buckle in.  Everyone tightened up and clung to their seats.  Not me; I knew what I had to do.

I stumbled up to aisle, at one point slamming my elbow on the ceiling to protect my head.  I pounded on the locked cabin door, as a stewardess tried to pull me back.  However, she could see that I had prepared for such an emergency.  A moment later, the co-pilot opened the door.  I pointed out that the vertical shear pressures caused by meteorological drafts in those northern latitudes were overwhelming the big planes broad 198 foot wings and creating oscillating forces which could fracture the binding pins next to the fuselage. Instead of decelerating, they should apply more thrust, abduct the wing elevators and adduct the tail.  Immediately, seeing the aerodynamic logic, the Captain made the change.  The plane stopped vibrating.  They were able to serve dinner.  I had saved the plane.

This is a ridiculous story.  No one would believe that a complex set of skills, which take years of training, experience and practice, could be mastered on the Internet, especially when life and death are on the line.  Really?  Consider this very common story; The Case of Ann.

Ann has hypertension, hypothyroidism, diabetes and metastatic cancer. Nonetheless, she eats well, has no pain and is very active, working part-time, and living a nearly normal life.  Not long ago, she started on new oral chemotherapy.  She and her family received extensive oral and written instructions about the medicine, what side effects to expect and of course how and when to get a hold of us.

Four days later she stopped eating, developed intense sweats and diarrhea. Within one more day, she was bedridden.

Her family did not call us. They did not call her primary doc or endocrinologist. They did not go to an urgent care center.   They went on the Internet.  They determined that these were side effects of the new drug, even though such immediate and catastrophic problems were not on the lists we had supplied.  Just to be cautious and because she was becoming severely nauseas, they stopped everything.

Over nearly a week she continued to deteriorate.  They called to inform us that the “side effects” were continuing.  We sent her to the emergency room where the systemic infection from her urinary tract, abrupt stop in thyroid replacement and out of control diabetes were found to be causing shock, requiring an immediate admission to the intensive care unit.

As a blogger, I am a gigantic fan of the Internet and its ability to empower.  It improves the conversation and the level of sophistication of patients and their families.  It provides alternatives, as well as a method of communication.  It can fill in vital gaps in knowledge for everyone involved in giving or receiving healthcare.  However, it can no more substitute for experience, judgment and perspective, than a 17-year-old can learn to drive on the New Jersey Turnpike by playing World Racing Challenge on PlayStation.

If this is such an obvious statement, why do the “Ann Cases” happen so often?  Patients diagnose and treat disease, or make major changes in therapy based on their understanding of medicine as gleaned from an online investigation.

Primarily, I believe it is a desire to maintain independence.  It is hard to depend on someone else, someone almost a stranger.  Accepting the “sick role,” can be demoralizing.   We all want to believe we are in control.  By looking for our own answers, we hope to find rapid and reassuring results.

The Internet seems to have all the answers and supplies more information than any one team of doctors could ever provide.  Paradoxically, while the doctor may be trying to be narrow and clear, the Internet may be attractive because it offers so much.  The Internet is not focused to a specific case and is not likely to incorporate the complexities of an individual person.  It is not about Ann, it is about all Ann’s.

There is the question of trust.  What is the goal of the doctor?  Is he thinking about me, or just getting through the day?  Is he tired, distracted or bored? It does not take much, such as a slowly returned call or a missed test, to add doubt.

Patients may use the Internet because they cannot or do not believe they can get in touch with their doctor.  Perhaps, they feel it is an imposition (as if doctors have something better to do than take care of patients) or maybe the doctor’s office is hard to contact or utilize.  Perhaps, when the patient or family does speak to the office they are shuffled around, cut off or their problems seem to receive short shrift.

We live in a time of rapid change.  We are all trying to understand the place of the Internet in life and medicine.  The information technology explosion can make it unclear when direct contact with a doctor, a phone call to staff, an email to the office, or personal Internet research is appropriate.  The medical relationship is in flux.

This is an important problem, which we will solve.  In the mean time, the patient – physician relationship remains key to healing.  It must be built and nurtured; there is no e-substitute.   Patients should use the Internet as an educational and supportive tool and use their doctor to actually give medical care.  You should not have to do a “search” when your need for help is right now.

40 Comments

  1. That is really good. Thanks for pointing that out so clearly!

  2. I believe your last statement is correct; the patient-physician relationship is key to healing. My wife sought out the ‘right’ physician by interviewing several when we found out her breast cancer moved to state 4. Fear was a major factor as it forced her to start a search to find the right doctor, one who would listen as well as talk. From that experience I can say with certainty there are many physicians out there who just don’t listen when their patient is talking.

    That was not the case with you, thank you!

  3. We are to see you & your family made home safely,be well we do not know what we would do without your loving care. Irma Mattioli

  4. The information technology explosion can make it unclear when direct contact with a doctor, a phone call to staff, an email to the office, or personal Internet research is appropriate. The medical relationship is in flux.

    The problem in my area is the phone bank. Yesterday I called about what I think is a communication problem in the EHR. I was told that they didn’t do medical problems. I begged to be connected to legal, since they said the communication problem was the result of a law. They wouldn’t do it.

    My PCP is having communication problems with the lab and me. I called the doctor’s # that’s on the business card, and I got the same phone bank that I talked to yesterday. I demanded to talk to whoever is the office manager. It was about something as simple as saying, “When lab work is ordered, I am asked if I fasted several weeks after I have the lab work done. Can I talk to the office manager about this, so my lab work cane be more accurate?.”

    My doctor just stares at me like I’m a fruit fly flitting around his face. The lab manager told me that that fasting doesn’t make any difference in the lab work. I no longer will take a test that requires fasting. I’m tired of my PCP and everybody getting ramped up to treat or prevent something that I don’t have, or ignoring what I came in for. I told the lab manager that now I’m suspicious of them. They changed non-fasting to fasting.

    Good doctors like you inherit the distrustful patient that comes out of situations like this. My oncologists are good, but they have to deal with my distrust of the system they are in.

    I can be a good patient, really I can, but I need a little help.

  5. Dr. S – I must disagree. First know that my medical team has been patient focused, comprehensive, and absolutely kind. BUT they were not correct – nor was the second opinion, third opinion, or the consulting opinions -all from top med centers across the country.

    Yes, I spent hours on PubMed researching my exact situation because the dx just seemed wrong. (The docs agreed that it didn’t fit but it was the best they had.) And, yes, that research paid off and I am truly well. 5 years of increasing debilitation, 30+ pills daily, and a less than 12 months to live admonition COMPLETELY reversed by my willingness to do what the doctors didn’t have time to do – find the one data set that actually matched my case. And then convince the same doctors to try what seemed like a shot in the dark.

    Unlike your example here, I followed their instructions to the letter for years until I had better information and only time will tell if I have damaged myself by doing so. And perhaps that compliance is what allowed them to let this patient try the one thing that has cured me. They call me a miracle – I call it good research.

    • Dr S. I think that you misread. My oncologists put me on the ACS diet to hopefully maintain my weight during treatment. I added 5 lbs before treatment-nose/mouth radiation- and then I maintained the desired weight. 2 oncologists called my PCP and told him that oncology rules, and it’s possible that I could lose 40 lbs in 6 weeks of treatment.. I know people that this happened to. My PCP wants me to lose 50 lbs now. The cancer is incurable, but I’m enjoying remission. I’m also reaching the end of the estimated remission time.

      My dentist of 20 years loves me as a patient, my ENT and his nurses will do anything for me. They say that I am reasonable. and that I understand what’s going on. My GYN says that I’m delightful, and he comes in and we chat about nothing. My oncologists call me the perfect patient that understands what’s going on. They say they wish that more patients lifted weights before they got cancer. My diet is high protein, with a healthy lifestyle They’ve been taking care of me for several years.

      I walk 100 lb coonhounds a half mile to a mile a day. I clean up after them, mow the grass, keep the house clean. I lift weights, I set some records in friendly gym competitions for certain exercises. This has thickened my core, and the weight of muscle throws off my BMI for a 72 year-old female.

      The HMO decided that even though my non-fasting sugar stick and glucose are low for my age, 72, and a cancer patient that I should be yelled at about diabetes, because of my BMI, I should have diabetes counseling-and the referral was to a specialist that deals with non-compliant patients. This is one reason that I’m upset about one sugar stick coming up with 3 results,-non-fasting changed to fasting. The lab work on the glucose has problems. By the way would you put up with sloppy lab work? I taught high school math, and I’d throw papers with answers like this in their faces and yell a lot.

      I was called by this specialist while I was checking out victuals. I made the appointment, as she said that she wouldn’t call back later, that I had to respect her.

      The phone call went like this. “Hello, I’m checking out groceries, can we talk later. Paper please. Ja, ja, Yes the chicken is leaking plastic is OK. Ja, ja, just what is your specialty? nobody seems to know. Your staff said that you see people. Ja, ja, whatever. Yes, I have a coupon for that. Ja, ja, Next Tuesday-that’s parsley not cilantro. debit card.-no cash back. Ja, ja, Bye.” The cashier said that the doctor had to be a real bitch. I had a line of people behind me, and if this specialist can’t multitask on one call-well-who has a low functioning brain?

      The next day I was still miffed, and I went to my EHR. My appointment was listed-and somebody added her notes. I could not cancel the appointment because I was hard to handle and disrespectful to her. I called up the office to cancel the appointment. I was told that I couldn’t. I told them that I’d file a complaint, and there needed to be a notation about my cancellation-That if this person ever contacted me, or had somebody else contact me on her behalf, I would file for harassment.

      My PCP’s head nurse called-she’s not even pre-diabetic and her sugar stick and glucose are higher than mine-and she told me about the BMI being used to scare patients into compliance into a healthy life. I explained about the ACS diet and why. She was appalled. Nobody told her that I was a cancer patient under tight supervision by oncology and a very good and respected ENT.

      I was diagnosed with a rare and aggressive cancer that doesn’t respond to chemo at all. The nurse said that her doctor wasn’t following the concept of practicing “Best Medicine”.

      Is it too much to hope that my PCP and the HMO would listen to my oncologists?

      • I did use the net about this specialist. FB, HMO page, Twitter, Linked, etc. and she said I love my work, I love this city and state, I love seeing patients and they love me. Next I did a search for the initials behind her name. I found about 6 medical schools that have this program. The header was that a student could fast track to a medical PH.D in about 3-4 years by doing research.None of them gave examples of what type of research It requires. A M.S speech pathologist spends about 10 years of research to earn a Ph.D. A friend spent 10 years, assisting in Chicago autopsies looking for signs of childhood brain injuries in criminals Vs. law abiding victims of crime-auto accidents.

        I couldn’t find any reviews, and I noticed that she never claimed that she was at the top of her class. That’s why I called her office. At least somebody at a dental office will say he cleans teeth, treats gum disease, or whatever.

        I rephrased-and asked, “What type of patients does she care for, what type of medical conditions does she care for?” “She sees men and women-white, Spanish, Native Americans. She sees people.” I decided that the phone rep must be in the phone bank, so I called the phone bank directly.

        I just wanted to clarify this.

  6. I think it is more than the availability of the internet where people get their “web MD” degree and lack of trust in the doctor patient relationship, inability to get hold of the doctor (which is a very real problem and often the front desk gatekeepers are behind this one and the doctor never knows this is happening), etc….

    I think these things also can play into idiotic decisions some people make:

    1) I have been absolutely floored on that on some, but not all fortunately, of the email lists I am on for my various cancers in the absolute belief by some patients that doctors have been “corrupted” by “big bad pharma”; that doctors are aligned with big bad pharma and been bought by them so that big bad pharma’s interests come before the patient’s best interests; that big bad pharma is all about profits and not curing patients as it wouldn’t be profitable for big bad pharna to cure patients; that big bad pharma is suppressing the cure for cancer (the corollary of that of course is that snake oil and woo scammers have the cure, it is natural and thus ‘safe’ where as chemo is poison and not ‘safe’, and their motives are pure – eg not profit to which I say really? and who benefits financially from all their expensive, not covered by insurance, not scientifically backed junk?) and that what big bad pharma offers for cancer is poison.

    2) Failure to remember anything learned about science in school. As a result testimonials are believed over science (and how science is written up, even for the lay audience doesn’t help), those who offer hope (even if that is not appropriate) or outright lie about results of their woo/snake oil are believed over “corrupted by big bad pharma” doctors. Patients often don’t have the science skills to evaluate what they read and so throw it all out. The Woo doctors write to about the 5th to 8th grade reading level and are very clear that their snake oil will work. Science articles are all about confidence intervals, limitations of this study, incomprehensible to some/many patient information about methods, statistics and written in a boring, formula style necessary to get published… So the loud message that comes through is that science based treatments can be dangerous and then when someone has bad side effects, these fears are triggered, the baby is thrown out with the bathwater, and they bail completely rather than find out if there are ways to reduce the side effects (the Woo doctors encourage patients to bail from all traditional medicine and so even if patients aren’t using snake oil there can be a tendency to bail from everything – rather than one at a time – to see if the problems go away).

    A corollary is that if patients don’t understand the purpose behind each drug they are taking and the dangers of abruptly stopping them, some are not going to know. You’d think people who take drugs on a regular basis they would know what each one is and what it does. Nope. All some know is that this pill is for blood pressure and often don’t realize the consequences of quitting abruptly. And some take so many pills that they have no clue why they are even taking all of them. Couple that with the tendency of people not to want to take drugs for life (or a long time) once the initial symptoms are under control and folks seriously underestimate the consequences of stopping something.

    3) Financial problems that reduce the willingness (or even ability) to spend more money on co-pays before you try to fix the problem yourself. A corollary to this is “I will wait until I get sicker to do anything that costs money” underestimating how fast you can get sicker or how “sicker” you can get.

    4) Believing what friends say they know, suggest, did, know someone else did… and believing people you know over believing doctors. My child has fallen into this with her so called friends. She is adopted at 10 and has a boat load of problems which has resulted in her falling to the bottom of the socioeconomic status heap in terms of who her friends are. She listens to those folks, their moms… and as I am finding out folk lore is what is most often believed with that group. She insists on giving her 2 month old rice in his formula because that is what other adults in her life tell her to do (that I tell her not to is not credible to her because I never raised a baby; that I can read about this is irrelevant to her as she only reads text messages, face book and instragram). When I reminded her what happened when she did that with her first child (intestinal bleeding and a lot of fussiness) and the doctor said not to give anything other than formula until her baby was 6 months old, her response was “doctors don’t know everything and X’s mama said to do this so he’d sleep through the night”. X’s mama had more credibility than the doctor because X’s mama had raised babies and so had first hand experience (of course the odds are high that the pediatrician had kids too but she discounted that because she had not seen the pediatrician with babies of his own). And X’s mama offered a simple solution to a problem she wanted solved. Never mind it was ineffective and dangerous. Then she attributed his fussiness to the fact that he was a fussy baby and being bad. Sigh. That is steep competition for a doctor and no easy way to discount folk lore when you are then indirectly discounting the person giving the advice… so ignorant advice from well meaning friends and family may be believed over the doctor when the doctor is viewed as the one to cause this to begin with, has not offered up solutions that worked completely in the past, is hard to get hold of, they found something on the internet to add credibility to the friend’s advice (never mind the website might not be credible)…

    5) trust and doctor/patient relationship – a lot more goes into this than what goes on when the doctor actually meets with the patient over the problem that brought the to you to begin with. If you complain that the front desk does X or doesn’t do X and those problems continue the patient starts to believe that the doctor doesn’t care – even if the doctor has no ability to fire the problem people because they work in a big practice where the hiring and firing is out of their hands (which many patients do not know). If the designated person doesn’t call you back about test results… the doctor must not care even if they are not the ones doing the calling. If the patient’s perception is that the nurse thinks (or even the front desk) whatever is going on is ‘usual’ or ‘normal side effects’ or ‘not bad enough’ and you are desperate then you try things on your own because you question what the heck is going on. Also due to this you aren’t going to waste your time calling unless something gets to be big bad and you think the front office might finally believe it is an emergency and give you a timely apt.

    The doctor’s belief that the front desk can appropriately triage what needs an appointment now and what can wait may well be seriously misplaced – I was given an apt 8 days out for blood work where my white count was 0.5 and I had no neutrophils. I knew enough to fight that but it still took 2.5 days to get in and then the oncologist was completely unaware of the appointment issue – in fact he asked me why I hadn’t come in earlier!!! so he got an earful. To make matters worse his staff that was supposed to flag for him abnormal blood work had not yet even given him my blood work (I had picked up results on my own so knew them since I had already experienced issues with this in this office). Since those kinds of problem never quit I concluded he didn’t care, was loyal to his staff and fired his sorry ass. I was also driven to the internet to try to find out what I could do in the meantime until I could get an apt. Fortunately I can read science and tell credible from not credible so I diagnosed my own shingles and got timely treatment in the emergency room since his office wouldn’t see me in a timely manner and by the time they would have seen me I would have missed the magic window to start the antiviral – again he asked me why I didn’t come in earlier. Ironic that when ER called him his office never called the ER doc back so he called a friend of his who was an oncologist. That he was competent once I saw him, took interest in me… was irrelevant. I didn’t trust him because I didn’t trust his office. I was driven to my own solutions to problems because of what went on with his support staff and lack of being accessible. Had I not been able to tell credible from not credible on the internet no telling what I would have done to deal with the agony of shingles.

    6) Woo/snake oil quacks have mastered the art of making patients feel like they (the “doctor”) are competent, have the patient’s best interests at heart, have *the* answers, sooth worries, etc. They have had to do that because the only reason why they are going to get sick patients to come back to them is to sell themselves since their treatments get you placebo effect if you are lucky, do nothing or do harm. Legitimate doctors would do well to learn from that aspect of what quacks do. Compliance is then likely to be higher with whatever the quack “prescribes” and they are less likely to discontinue the treatment as quacks have learned how to address that one as well. Something else science based medicine can learn from.

    7) Googling on the internet lists snake oil sites right up there with the credible ones and many people *still* believe that if it is “allowed” on the internet it must be true. Plus often the snake oil sites are more readable so that is what they read, complete with testimonials – so it must be true – right? LOL (not). Science ignorant people do not understand why testimonials are not “proof” of anything. We are used to testimonials all the time – we ask a friend for advice and try what they did if they said it worked for them… of course it is one thing to do that over a hang nail and another thing do to it over medical treatment, however the underlying drivers of why testimonials and advice from “credible” friends and family is tried even if the person is somewhat skeptical or if they believe the person remains the same… hard for a doctor to fight that one too.

    Well this got long. Sorry.

  7. Thanks so much for sharing this unique parable of saving that plane, Dr. S! Daring to question the actions of an expert (whether pilot or physician) who has “a complex set of skills which take years of training, experience and practice” does indeed seem ridiculous.

    Ridiculous, unless you’re a patient being misdiagnosed. I’m pretty sure, for example, that the Emergency Department physician who sent me home from hospital in mid-heart attack with a GERD misdiagnosis (despite my presentation with central chest pain, nausea, sweating, and pain radiating down my left arm) had “years of training, experience and practice” himself. But when I questioned him about his decision to send me home (“But Doc, what about this pain down my left arm?” – because even I knew arm pain isn’t a symptom of indigestion) the nurse approached me privately and warned me not to ask questions of the doctor, adding: “He’s a very good doctor and he does NOT like to be questioned.” Really. Seriously.

    I’m also pretty sure that had this Emergency physician bothered to go online to search my textbook MI symptoms, he and Dr. Google would have immediately come up with the only possible correct diagnosis – instead of sending me home feeling embarrassed for having made such a fuss over “nothing”. So embarrassed, in fact, that despite suffering increasingly debilitating symptoms back at home, I deliberately delayed returning to Emergency for a dangerously long time. And hey! At least I knew it wasn’t my heart because a man with the letters M.D. after his name had told me quite clearly: “It is NOT your heart!”

    And THAT is why patients go online.

    regards,
    C.

    • Carolyn – I would agree with you. I also think they go online to understand more about their disease, what other treatment options are out there that weren’t mentioned. Along the way I had a very good oncologist at one of the top NIH cancer hospitals who was on the committee of state of the art treatment protocols…and 6 WEEKS before it was to be published as a treatment of choice (one of several), choose to not tell me about that treatment because it wasn’t on the list yet (umm it was approved to be and the list came out 6 weeks later…). I found out about it on an email list I am on and by reading ASH abstracts and by reading about clinical trial results. I then asked about it. He agreed it was a good choice also. I decided to go with it after we discussed it because it was more effective, fewer side effects and you kept your hair (I was on the job market so this mattered and it had been a bad year with two major cancers and one minor one and losing my hair was just going to make it worse)… This is also why I go online. I also went online to see if there was anything more I could do about unrelenting nausea that we weren’t already doing (since that office doesn’t call you back in a timely manner and I had already paid $120 that week in office copays and so wan’t going to pay another $40 if I had basically been given all the choices… (we never did get my nausea under control the entire 4 months of chemo)… and there turned out to be nothing else I could find so I waited until I was back in for something else to discuss the problem…had I found something else I would have called asking about it…

      • Liz, one has to wonder why “a very good oncologist at one of the top NIH cancer hospitals” who must be well aware of “state of the art treatment protocols” wouldn’t discuss this as a potential option with you – even as an “FYI, something’s coming down the pipe soon…” Patients shouldn’t have to become detectives in their own care.

        • He is “conservative in his treatment choices” according to the fellow there who saw me prior to the onc apt due to the PA being on vacation. The fellow was probably was gossiping more than they would have approved of however I learned more about my onc, his philosophy and approach to oncology with that conversation than I had learned on my own up to that point. I was told the onc wanted to wait to use anything until he could see more evidence than is typically present when something is first approved. Not sure what he was using as more evidence – perhaps testimonials of the oncs he worked with (scientific method based sarcasm here) using it?

          I later asked my onc about a consolidation treatment (since he also was reluctant to do maintenance therapy, also recently approved) that involved radiation attached to an antibody that attached itself to a component in your blood (immune system cancer with a marker on a B cell in the blood so the radiation would be carried by the blood) so it could radiate cancer all over your body (I had abdominal cancerous nodes and where some of them were made radiation pretty much out due to no way to avoid collateral damage to important stuff in there). His reason – not enough was known about the long term effects to the bone marrow… umm well yes the 10 years or so of study with follow up may not be long term enough if you have like 50+ years left in your life span and there may be some bad late effects, but seriously lets put that into the context of the usual life span with this cancer and the relatively low levels of problems over 10 or so years where patients have been followed. Besides I will be dead well before 50 years have passed so am not going to worry about what might happen 50 years out. If I happen to be alive then by some miracle, and then some bad effect happens at year 51, I will worry about that then because (a) who knows what will be possible then and (b) if this is what got me the extra” big bunch of years” above and beyond the usual life span then I guess I have no right to complain at year “big bunch of years” plus 1 bad shit happens because I would have been lucky to have lived all those extra years anyway.

          I would imagine (only half joking here and obviously speculating somewhat tongue in cheek) his purpose on that committee was that of the assigned fault finder. His role was/is likely to be the person who finds fault and shoots down any decision, finding the contrary arguments, bringing up the reasons why caution is needed, more information is needed… and actually (now serious) that role is needed when decisions are being made because without someone trying to shoot holes in a decision then mistakes are more likely… Only I think he maybe was assigned that role because he is that way naturally, rather than assigned to present that point of view LOL. On the the other hand, if he wasn’t naturally that way and as assigned that role maybe cognitive dissonance effect (you come to believe what you are arguing for even if in the beginning you were only play acting that because your brain can’t handle that kind of contradiction very well) got him. LOL.

          Actually I think his “standard of proof” is perhaps stricter than the “norm” in science. He is probably (for science geeks) a p<0.0001 guy (for the non science geeks: 1 chance in 10,000 this research result is due to chance and not due to the treatment) than an p<0.05 guy (5 chances out of 100 this result is due to chance).

          Who knows. He is competent, keeps up and is no longer my onc as I fired him and now have one (at the same place and it was dicy to switch) who treats the whole person, not just the disease. The new person doesn't make sarcastic comments putting me down like the fired onc did (eg "humor", although not from the point of view of the recipient, from the recipient's point of view it is snark, probably to make sure we kept an emotional distance from him so he wouldn't have to look at us as anything more than a cancer – I"d imagine a defense against emotional burnout) and is just as competent – only he is also kind, supportive and I very much appreciate the difference.

  8. You do have to be your own advocate. I was in the ER one time..vomiting, bad coughing, very sick. I had been to the ER maybe 2 other times because I was coughing so bad and had trouble breathing. The ER doctor ordered an x-ray. After getting the results he came and told me there was nothing wrong and sent me to the psychiatric hospital to be checked. I waited there and was vomiting and the lady said, “You’re sick..you need to go back over to the hospital.” Long story short, I finally went to a pulmonary dr. and they ordered a body scan and turns out I had 6-7 rib fractures. I KNEW there was something wrong with me! Especially in an ER, doctors are seeing you for the first time and don’t have a relationship with you as a patient.

  9. I read UpToDate, ClinicalKey, etc. and when I come up with the answers before a couple of specialists in their own areas, they don’t use science, don’t answer questions, etc. enough is enough.

  10. Not all doctors listen or pay attention to what doesn’t fit into their cookie cutter patterns. Many patients take research into our own hands after just too many dismissals and denials of conditions that severely affect our lives. I have been proved right. It is not surprising that my own health matters more to me than it did to my doctors. They certainly squandered any trust I had in them.

    With the help of excellent online resources, including articles in various medical journals, I correctly diagnosed my own cardiac condition. It was really the only diagnosis that fit all my symptoms, my unusual EKG, but that didn’t keep my PCPs and my cardiologist from dismissing it for 6 years. “That would be very rare,” they said, and were unmoved when I told them I have already survived a cancer that is even more rare. It wasn’t until 2012 when another cardiologist read my echo, found it consistent with my own diagnosis, and consistent with my echo of 2009. For 6 years my docs had misread my echo, dismissed my symptoms and denied that diagnosis.

    Using the same online resources to unravel my own symptoms, I correctly diagnosed my own partial central diabetes insipidus: most likely a long term effect of radiation therapy. That too was dismissed by my PCPs and 2 HMO endocrinologists for years as I grew sicker and sicker. They too said, “That would be very rare.” Late last year I found an endocrinologist who came to the same conclusion as I had and began appropriate treatment. My life and well-being have turned around, but all those years in which chronic sleep deprivation and dehydration were needlessly prolonged continue to put me at risk of numerous health dangers.

    What lessons have been learned? What is my HMO doing to keep that from happening to someone else? Absolutely nothing, except that I tell everyone to promptly leave any doc who does not seem to take you seriously. IF you can. But the reality is that not even most people can.

    In the meantime, many of us will consult Dr. Google. And that just might save some of our lives.

    • If you can get somebody to listen to you—–Right now, I just escaped the diabetes prevention quota game. I bulked up for nose/mouth radiation-managed to hold my weight. I’m a person that enjoys lifting weights, so my core is thick-muscles weigh more than fat. Nobody bothered to enter in the diabetes records that I have incurable cancer-and they are supposed to reduce my stress and let me be happy. My sugar stick and glucose is below that of my PCP nurse. She was shocked to find out that I have cancer. I went up to oncology and counseled with a diabetic. He said that I have one of the lowest sugar sticks in the clinic. Both said the HMO looks at the BMI and pressures doctors to meet quotas. I was sort of lied to—I’m trying every way possible to avoid this PCP—Urgent Care Clinics, my oncologists and other specialists. I’m refusing to take any more glucose tests. I suffer from stain toxicity caused by cholesterol prevention goals. I kept saying-NO-then I gave in-rhabdomyolysis-thank you very much.
      That’s why I super freaked out when my PCP said, “Your blood sugar is high. That’s a sign of type 2 diabetes. We really need to care for it now.” I went to war Patton style. I confronted the lab manager, because I noticed different results on the one test that was done at a certain day and time- that non-fasting was changed to fasting, it kept going up a few tenths.

      I seriously considered suicide because of the statin toxicity. I thought of changing Medicare advantage plans, but they send everybody to mine. One goes bankrupt about every 2 years and cancels contracts. Another dropped me on the floor several times. My daughter was dating a young MD that ended up having his leg broken in post-op-Everybody knows they hire junkies. Anther one is a plan that uses my HMO. So like someone said above– many people can’t escape.

      • The whole BMI/statins thing is yet another medicine-by-the-numbers. A few years ago I stopped the statins that I reluctantly gave in on before – my HDL and triglycerides were always great and they still are. I work out a lot and the intake person for my former PCP used to chide me about how my BMI was a risk factor. Also if I reported more than 5 drinks in one week. She was pretty chubby and we had the same BMI. I just said, “Look at me. Muscle weighs more than fat.”

        Remember: These PCPs are the same people who never bothered to add my history of radical head and neck radiation to my list of ongoing issues. They ignored my reports of chronic sleep disruption, my charts of fluid intake and output, and couldn’t get that the very same sleep studies that said my sleep apnea was on the low side ALSO showed that I essentially got no rest. Talk about risk factors!

        It can be very hard to change docs. At our HMO I kept changing PCPs every few years. I’d hear about a good one, but usually they weren’t taking patients. I have so many ongoing issues I can go right to a number of specialists, so did my best to go around the PCP until I found another one to try. My PCPs ignored my reports of constant headaches and it was another doc who ordered the MRI that showed my golfball-sized brain tumor – assumed to be a long term effect of head and neck radiation. At long last I finally found one who is sharp, genuinely interested and compassionate, and she has made a huge difference in my care. But I found her when she was a newly-minted doc still taking new patients and now nobody can get her: she filled up fast and hasn’t taken any new patients for over a year.

        • It’s all about the $$$$. States and health programs (HMOs, insurance companies, clinics-which are pressured by the state) that meet the goals of diabetes prevention and lipid/cholesterol prevention get extra money in the forms of private grants, foundation grants, and federal grants. They often receive higher remuneration by meeting goals in preventive medicine.

          I talked to a nurse in this system, she has a certain amount of heart damage because her hyperthyroid wasn’t diagnosed for years. They gave her BP meds. She was excited to talk to someone that understood and didn’t think that she was crazy.

          They are so busy taking care of imaginary things, that they won’t take care of a real complaint.

          I went in for my thyroid screen-and the doctor started this about glucose. I began having extreme salt cravings, and made the mistake of going in. Apparently this doctor was the last straw for my system. I still don’t why I sleep, ans sleep. How can you trust this system? I get terrified meeting a new doctor-or going in and something is different-like a rude nurse-or the nurse on her own personal crusade-and my body will go bonkers.

  11. “However, it can no more substitute for experience, judgment and perspective, than a 17-year-old can learn to drive on the New Jersey Turnpike by playing World Racing Challenge on PlayStation.”

    But just last year a 16 year old boy using information available on the internet, and pushing his way through nearly 200 rejections of his request for research lab space, created a new way to detect pancreatic, lung and ovarian cancer that costs pennies per test and takes only minutes to run. The prior year a 17 year old girl solved a problem with breast cancer (which she displayed at her high school science fair) that had stymied professional medical researchers for decades. I had to wonder, as both her parents are doctors, if she hadn’t had some help. I also considered what may have happened to her parents if they themselves had turned in the discovery. Might they suffer the same fate as Dennis Slamon did with the story of Herceptin and Genentech?

    Each of these two “amateurs” (and more) have received awards, tens of thousands of dollars in scholarship money; as well, as their 15 minutes of fame. Yet, what have the “geniuses” done with these discoveries using their highly touted “experience, judgment and perspective?” Languishing on some dusty shelf, I suspect, with a note “For future study.” I seriously doubt that the medical community would be concerned about hurting the feelings of a teenager, and keep it to themselves, if they found any of the creations to be failures. However, they just might “shelve” something (for “further study”) that could not be made financially lucrative.

    It is the height of arrogance to believe that a doctor…a total stranger…can know more about how to “incorporate the complexities of an individual person” than that very person, themselves, or someone who has spent decades living intimately with that very person. They have information that you could never hope to know. Most times they, themselves, don’t even know they know it until something “clicks.” That “click” may just be triggered by something seen on the internet. Remember how our parents said the same thing about television. Their parents probably said the same thing about radio. Even cave-parents probably said something similar to their cave-kids about something, perhaps the sun. Would you deny a patient their “click” moment if it could be the one thing that would save their life and you hadn’t thought of it?

    What if they read it in a magazine? Perhaps the ‘Journal of Clinical Oncology?’ Many libraries have databases on the (ouch! There it is again…that pesky) internet that can be accessed with nothing more than a completed application for a library card. Often, they even supply access to a computer. Would the medical community accept their word if it came from a scholarly, vetted article from a prestigious magazine as opposed to a “great metropolitan newspaper” (they are soooo last year!)? Or, would the problem of ego and petty jealousies get in the way?

    The internet is not an “important problem” for the medical community to “solve.” It never was and never will be. The internet was embraced initially by the medical community as more of a way of getting patients off the backs of doctors and funneling more of them through the system on a daily basis to increase revenues. To be fair, this was more likely an administrative decision as opposed to a doctor one. The internet became problematic when statistics started coming out such as how little time (if any at all) patients were being given with their doctors. If a study came out that said most patients averaged 22 minutes of doctor time per visit and they only got 6 minutes with theirs…well, you know how that would go over. Now, doctors seem to be simply tired (as are parents) of hearing, “Well on the internet I read…” Doctors simply need to get over it, not fix it.

    If the medical community wants to fix something they can try something like “seeing a nurse practitioner is just as good as seeing your doctor.” Well, if that were true then why aren’t they all just called doctors and reduce the schooling requirement to the lowest common denominator. Or, even better, fix the doctors who diagnose upon sight and before (or even without any) examination. My wife was looked at by the doctor as he entered the room and due to her obvious over-expression of ascites fluid (and her PCP’s write-up, I’m sure) he diagnosed her as having ovarian cancer before he crossed the room to reach us. He followed that with “You have ovarian cancer and you are going to die. I’m going to step back out in the hallway for five minutes to give you time to decide if you want to pursue treatment.” I asked if he had considered endometriosis as it has the exact same symptoms my wife displayed. He replied, “We’d all like to believe that but it’s ovarian cancer take my word for it.” He threw in another “and she’s going to die” I suppose just for good measure and his learned determination of my need for extra convincing of his skills. I hadn’t even told him I read about endometriosis on the internet along with every book in the entire library system and every professional medical magazine they had or I could find. Please…fix that! And for anyone reading this who may be wondering…it was endometriosis! And while the medical community is on a roll, a cure for cancer is long overdue.

    As to your last line…”You should not have to do a “search” when your need for help is right now” I must ask, can you match the internet’s 24 hour availability? The most important thing that everyone must know about the internet is that it is a mirror on our society. Just as in our non-digital lives, there are more people on the internet looking to exploit you as opposed to those wanting to help you. The largest group of all is those who are apathetic to the whole thing.

    As to your saving the airplane from certain disaster…If your name was Dr. Bruce Willis, I wouldn’t doubt you for a moment.

    • Here here!! I have this same problem now. The doctor ruined 2 care relationships I had, and then 2 others now got told all sorts of things about me. So how is that helping?

      • This is so true.

  12. It was the wee hours of the morning when I posted the above and my “wrap-up” was not as pointed as I’d wanted it to be. Please substitute what follows for the last paragraph (just above the Bruce Willis line). Thanks.

    As to your last line…”You should not have to do a “search” when your need for help is right now” I must ask, can you match the internet’s 24 hour availability? Do you “price match” for those who can’t afford you? The most important thing that everyone must know about the internet is that it is a mirror on our society. Just as in our non-digital lives, there are more people on the internet looking to exploit you as opposed to those wanting to help you. The largest group of all is those who are apathetic to the whole thing. But never, ever think we are too ignorant (or stupid) that we cannot understand something or know fact from fiction unless we heard it from you. The only people on the internet who are looking to become a doctor (or save an airplane) are those seeking to set up a practice without the time spent on education and without a license. The rest of us are simply trying to help save a single life; sometimes our own and sometimes that of someone we love and there is absolutely nothing wrong with that. How does that not fit in with what you do?

  13. Note to Dr. Salwitz and to Kevin M.D.: If this column appears on Kevin MD without the patient comments posted here, you would be doing your readers a disservice.

  14. I agree with Kathleen about the comments being included, if posted on KEV M.D. We enjoy your opinion and experience-also you have a sense of whimsy. Honestly, you have said things that affected me deeply and helped me to make decisions about future care.

    I’ve talked to my oncologists about some of your observations. mainly the one about how people are treated differently in the same hospice.I realised that I needed to talk to my oncologists about the following. I’ve always tried to fight staff in the recovery room, I get tangled in tubes and sheets, claw at surgery sites, and I do not understand how I could be expected to survive for over 6 months waiting for half of a prosthetic face and nose to be made and fitted, while tubed, and missing a nose and the right side of my face.After I had my hysterectomy, I requested socks to be put on my hands, and to have at least on hand restrained. I apologize before surgery and send flowers and a thank you note to the recovery room staff and to the ward nurses after I get home.

    Dr. Wibble and others submit to Kev M.D. and the comments are left out. I feel that your followers are also your test subjects on how the article will fly, excuse the pun. We are your critical readers, the editorial group. I certainly don’t expect you to include all of my comments and ramblings, but you should agree that when you call doctors’ numbers, and the same person answers all of the calls (phone bank), which supports Liz’s comment, ” inability to get hold of the doctor (which is a very real problem and often the front desk gatekeepers are behind this one and the doctor never knows this is happening), etc….” In my case it’s the HMO trying to reduce the overhead that there is a communication problem that faces many patients.

    I’m sorry that I didn’t paren and cite your words that started my original comment. I was waiting to hear from the vet about the outcome of a tumor removal of my Bluetick Coonhound, and the phone kept ringing off the hook. I wasn’t focused.

    It’s nice to not read something from a med student, resident, or someone with an agenda pushing something.

    Thank you for being you

  15. Dr. Salwitz – you have kind of taken a hammering on this blog post – some of which has gone off on a tangent… I agree it would be nice as a patient to sit back, trust the doctor is up to date, has the time to do his/her job in the best way, the front desk will triage appropriately and get you the appointment you need in a timely manner… and maybe it works that way in some offices – not often in my experience though. Of course I’d google even if I had absolute trust in my onc (well google scholar, library databases, Pubmed, etc.) as I deal with stress with information, and luckily for my oncs I understand science, statistics, research methods… so at least I am not asking about carrot juice as a cure for cancer (and yes, as I am sure you have experienced this, there are fools who believe this LOL) and instead we can have am informed conversation where you politely tell me I am full of shit and this is why (cite ASH presentation or med journal article) and I say, but what about X (cite other ASH presentation or medical journal article)? You who may or may not have not read X but none the less have other information in your arsenal/experience to back your opinion( and so indirectly are telling me to stop practicing medicine and listen to you…) and we come to a mutual agreement on what to do that you approve of because 1) I trust you are up to date even if you didn’t read X, and 2) you have enough other facts to back up what you are doing that this addresses my anxiety that you weren’t issued a magic wand with your MD degree and that the practice of medicine has some uncertainty involved, especially if there is no one “gold standard” treatment choice…

    The internet didn’t introduce stupid though. Prior to the internet it was “my friend of a friend of a friend said… or a book in the library or an article in some magazine…” While the reach wasn’t as large and the pre-internet method of gathering information wasn’t as accessible as the internet, AS LONG AS PEOPLE’S NEEDS AREN’T BEING MET THEY ARE GOING TO TRY TO MEET THEM ON THEIR OWN even if it sometimes involves stupid. And there is no way practices can be accessible 24/7 even if people have the best of intentions.

    You are not going to be able to turn off the internet so instead of fighting it the medical profession needs to harness it. I think one piece of the solution is for the oncs pass out a sheet of paper with credible, trusted websites (people are going to look there anyway – might as well head them in the right direction) written in 5th-8th grade reading level (both the websites and the handout) where people can go look for answers. While you are at it add the websites where to go look for drug side effects (again not the technical ones where they will see 1/10,000 will suffer some bad thing, rather ones that are written not to scare people who have forgotten most of the math and science they ever knew). Then people can see confirmation that you are “right” and so might be less likely to do stupid and might be more likely to call and make enough of a fuss they aren’t blown off by high school diploma triage receptionists (and no, waiting until the end of the day for the nurse to answer phone calls isn’t the answer to the front desk triage problem). Then when problems happen people have a place to look that won’t give you ulcers (yeah I know h-pylori not stress).

    Also give out information on how to identify woo/snake oil websites (only testimonials, can only buy the stuff from the web provider, mocks traditional education/medicine/big bad pharma/profit motives -conveniently leaving out how rich they are getting selling their own snake oil/woo – they appear to be pretty formula – and while you are at it warn them about TV doc, especially one who shall remain nameless but who promotes, among other things weight loss pills and have woo docs on there at times, pbs does that too at times). Letting them know about sites like quackwatch.org would help too. There is another one that has slipped my mind at the moment, that posts what the testimonial websites don’t have – information about failures of the snake oil. People on that site post about how the snake oil killed their family member, made someone worse…
    I
    f people can read science and understand it then have a second handout that refers them to the more technical websites too. This stuff needs to be short though or people won’t read it. And if you have it uploaded online then people can go to your website and click from there too (if they are going to the web anyway clickable from your website, if you push your website, will insure many of them will happily click away from there as it saves the step of googling).

    Even when all that is said and done you still are not going to cure stupid. There is no way to anticipate all the forms of stupid that are out there – although I am sure you have seen a good portion of them. So writing up a short sheet of common mistakes people make when things look like they are going south… and what to do instead…might make sense.

    And since I am on a roll with unsolicited advice (so stop reading if you don’t want any – you have been warned) – you need to somehow learn to let it go even when the patient is harmed by their own choices, because ultimately what they choose do is out of your control (which I am sure you know but it is clear from your blog post you are struggling with this). No matter how much you care (and even when there is trust) and try to do the right thing, it is not going to change that patients and their families sometimes make choices, some of which are not in their own best interests, and sometimes ignore everything you have said/given them to help them make “good”/”helpful” decisions.

    An imperfect analogy: I have an adopted at age 10 kid, now 22, with a boat load of problems (more like a sinking ship boatload taking on water and I can’t pump fast enough since she won’t help) – there is a good kid buried in there but it would take a backhoe digging a ditch through the earth half way to the Indian Ocean to find it at times) who is now (theoretically) “grown” (to quote her anyway) and she has 2 kids 10.5 months apart with a third on the way about the same months apart, 3 different dads, no job… chaos in this house and I was beyond stressed out at times as she was growing up and also at times when she blows in and out of here (as she still does). I did the best I could – counseling, monitoring the internet, phone, staying at home to try to prevent her from sneaking out to party, made her wear tight clothes with no pockets and no purse when shopping with me to try to prevent shoplifting (and the list goes on and on).

    I had to learn how to step back and realize that while I cared deeply for her and what happened, stopping this train wreck/ship sinking in slow motion was/is out of my ability to control – even by helicopter parenting. I could give her all the tools, help, etc. she needed to be successful in life but she was the one who needed to (or not) decide to not let her past wreck her future and take advantage of what I was offering her. I had learned that lesson many years prior working with adjudicated youth (took them canoeing across the state of florida so lived with them 24/7 for 28 days and somehow I learned how to step back while doing the best I could for them, I cared about them and what happened to them, was worried about the future of some of them who either came from bad circumstances or who appeared to be on the road to disaster… but at the same time I had to learn not let them push my buttons and the result was I never got mad. I had to actually decide if it was appropriate to act mad when they did certain things – I didn’t care less, I just dealt with it differently). Had to relearn that lesson with my kid. Multiple times. Sometimes I am a slow learner LOL.

    My stress levels dropped significantly when this finally sunk in (and before I learned this lesson again, I thought about disruption of this adoption multiple times). While the analogy isn’t perfect… some of us are train wrecks in slow motion at various times during this cancer road trip, bad/stupid choices are made at times. (I, for example, didn’t even call the onc when, during chemo with a last known WBC of 1.5, almost no lymphocytes, had a probable virus -not flu but close, I had a temp of 101.4 at 9am in the morning – I went to work as I knew I’d be hospitalized if I called, didn’t have any more sick days, no one would take in my kid as she stole from them – I am a single parent – I just plain got lucky working for 10 days with a temp that hit 103 or 4 by mid afternoon each and every day that other bad things didn’t happen). And in during this road trip doctors and their staff are sometimes yelled at, information provided is sometimes ignored (or we lose the sheet before we even read it and are too tired or too embarrassed to do something about it), directives and advice is ignored…and some of us even know better.

    Helicopter doctoring just isn’t possible as much as you’d like it to be and as much as you try because you care. So let go and don’t helicopter since it seems to give you heartburn. Besides as any helicoptering parent has discovered, it doesn’t usually get you the result you want anyway (kid who does the right thing, takes charge of their own life in a responsible way, etc.). Give us (cancer patients) the information and tools we need to make good decisions in ways we understand and can use (which isn’t going to be the same for every patient) and then realize that no matter how conscientious, caring, etc. you are, no matter how good the tool, no matter how you follow up and even hover, there are times we cancer patients will choose to make a bad choice, even if we know better, even if our choice doesn’t make sense to you and even if later you realize we “misunderstood”… Because ultimately human beings can and do act in irrational ways – that’s just the way human beings were made, are balancing competing sets of needs and sometimes the thing/need/consideration that comes out on top that drives a set of decisions, are not the cancer related needs even if it negatively impacts the cancer road trip. I think parenting and doctoring do have in common that we are trying to direct the actions of human beings who are generally less knowledgeable/trained in what they know vs what parents/doctors know, with less life experience in the realm we are trying to influence their behavior (and yes some of us cancer patients might at times doubt that statement LOL). And doctors have the harder time of it because they are hampered by the inability to “ground the patient and take away everything they value for a couple of days” for stupid. And sometimes cancer patients do stupid spectacularly well. And, much to your frustration, some likely even practice stupid a lot so are really good at stupid.

    So until they invent a cure for stupid (likely they will invent a cure for cancer and invent grass that stops growing at 3″ high and chokes out weeds first LOL)… give us information, arm us with tools, aim us in the right direction on the internet, listen to our concerns and address what you can, build trust, keep current in your speciality, be accessible as is reasonably possible (so there is a safety net if we were to choose to use it) and then exhale, step back and let go…because that is all you can reasonably do… med school didn’t give you a magic wand.

    OK. Done. And now I will go back into my hole and lurk…

  16. Liz, you are very sweet and sincere, but suggesting handouts like that would be incredibly time consuming and expensive. I say this as an English Major that met speech pathology and medical students after midnight or some other odd times to do research at the university medical library.Then editing their papers, suggesting a stronger or different cite and source to pound the nail into their work. Remove the superfluous.

    Then the price of paper and ink is tremendous. I averaged slightly over a 100 students a day- and I still have a beast of a commercial printer that’s 18 inches from me. I easily spent over $400 a year on paper and toner, and that was with the school district giving me a paper at their print office..

    It takes a tremendous amount of time and energy to properly correlate the data and references, edit and redact. The federal and state laws are ever increasingly strict about liability and copyrights. Anymore a handout has to go through a legal eagle.

    There are so many variations of one cancer, and each variation has different treatment options. The ACs should be providing access to the general data and abstracts-it doesn’t.

    5th-8th grade level-that signifies nothing.

    .

    • If whatever professional organizations are out there for oncologists put together these kinds of handouts and kept them updated, posted them online, then that aspect would be much easier (eg vetting the info, keeping it updated…) but… I am not talking about actually handing out general cancer information or treatment specific handouts of all the options (although my cancer center has an actual booklet they give us day 1 and a ton of other handouts so some places already do this). Rather I am talking about a one pager that lists which websites have credible information on them that are written to be (a) understandable to those who have forgotten more science than they ever knew, so to speak… and a second list selectively handed out to those who want them for (b) those who have a more sophisticated understanding (so can deal with searching pubmed, etc.). Then also linking to them from your website (what some cancer centers already do). There are already some good websites out there written for the lay person about drug side effects (although admittedly I usually read the ones aimed at professionals instead – but if I am in a hurry I skim the lay one). All the handouts really need is a list of urls and a short description of what can be found there.

      Actually thinking about it, if the professional organizations for oncologist and any related specialities jointly created a website to put all this stuff in one place and then kept current their section of it that would be even better (yes I know I am probably dreaming here). But seriously, there are relatively few places out there that have reliably credible information across a pile of different cancers (although admittedly some is really superficial from my point of view although it would make my mother happy) and so it shouldn’t be all that hard to pull it together in a list of general cancer urls and then depending on what the oncologist practices a short list of more focused websites.

      As far as handout costs – now that medical records are to be electronic that frees up a lot of paper… and $400 a year (besides probably not being even rounding error in most practices) for handouts is probably less than they spend on that stupid privacy act junk I/we get handed each and every time I/we show up somewhere (I give them back so they can reuse them and just sign the one sheet – the smarter offices put that page separately from the privacy stuff so the privacy papers can be reused). Small price to pay, I would think, in order not to waste even more time at, what? $120/hr or so, dealing with carrot juice, purified urine, etc. questions. And also then hopefully not having to deal with as much “stupid”.

      • Liz, I just think it’s a good dream. I can’t even get my HMO to list that I have incurable cancer next to my name, and I have a DNR. It runs the only ambulance-EMT service here, so 1st responders should be able to see that I have a DNR. That would break privacy laws. It’s that freaky and illogical.

        You really don’t understand how much data is stored on hard copy and electronically in one library. I was able to find some back doors to some data for my own condition. Some of the people that I helped write papers for let me use their restricted accounts for my own research. I met my current doctors and told them what I found and where. They asked me how I gained access to that, and I interpreted it accurately. I staged myself too. The first 2 doctors didn’t even do that.

        Another problem is that sites change their electronic addresses in hospital and lab consolidations, new contracts with other health agencies, with software companies, even with the IT techs, etc. Remember one ‘dot’ in the wrong place makes a site address useless.

        You really need to go to Change.org, Avaaz.org, etc. and start a petition that demands that the ACS works on a site that does some of this. But, as I said above, many of the useful resource sites have restricted portals.

        Do you realise that in the past that the State of New Mexico was the only.state that required public access to state university medical libraries? I know that NM medical libraries are still open to the public, but I don’t know if any other states opened their libraries. Other states talked about it.

        As far as the EHRs, some are good, some aren’t any good at all. If all of this data of just collated URLs for one type of cancer-say breast cancer-it would take forever for the health record to load up on the PC. If patients and doctors complain now about staring at the monitor, think of how much worse it would be.

        I get comfort from reading Sunrise Rounds, and the many different opinions that are in the comments. I’m glad that Dr. Salwitz takes the time to share his thoughts and observations with us. It’s like a comfort food for my spirit.

        • Thanks to your docs for allowing that. That’s really wonderful.

          I have access to my medical library here and the librarians are wonderful!

          I am also grateful Dr. Salwitz gives his impressions. I would rather see or know impressions and how we all can get together and talk things maybe. Gives one hope for the future.

          • I’m glad that other states now allow this access to the medical libraries. As they say here. in NM, taxpayers bought the data, pays to run the library, and often pays for the research that creates the data.

            We’ve had travelers, tourists that had someone hospitalised. In the long hours, someone will ask them if they’ve been to the medical library.

            When they returned home, they asked about their own medical libraries. The libraries are more conducive to Internet research too.

            NM libraries have all public libraries connected to our medical libraries. That helps too.

          • Our public libraries aren’t connected to our local one. I just know because I’ve been there.

          • That’s so sad. NM is in the top 5 for rapes, drugs, crime, poverty, teen-age pregnancies, domestic abuse, childhood hunger, unemployment, violent assaults, drunk driving wrecks,I’m sure that I missed a dozen more bad things.

            But this is one thing that we’re doing right-who’d guess—

        • AGAIN, I am not saying NOT ALL urls – JUST A FEW GOOD ONES for a broad category of a cancer. When I had my first cancer I started to google and quickly got overwhelmed by all the information out there, didn’t know the good sites from the bad… so being given a heads up that if I wanted to go read about this try these 2 or 3 websites as a starter. There is no need to list everything out there. The purpose of doing this was to direct patients to credible information as a starter since many will google anyway. Might as well have them start with “good” information. The purpose was not to be the do all end all of a resource for all sites out there. Never said that.

          Heck with my current cancer there are, I think, 5 major, broad categories of cancers included on that website: leukemias, lymphomas including hodgkin’s and non-hodkins and the later has 50 or 60 subtypes I think, plus 3 more broad categories – one stop shopping so to speak for a ton of cancers. And plenty of vetted links elsewhere…

          You are welcome to think this is impossible, can’t be done, won’t work… it is currently being done where I am treated (comprehensive cancer center, 500 miles from where I live) and at one of the local places that was following the plan set up by the comprehensive cancer center. So clearly this is doable as it is being done.

  17. As I read the new comments from all of you, the things that come to mind for me are the almost universal statements being made these days that “we are partners in your care, a partnership between doctor and patient with the same goals in mind” or some such version. Well, I don’t know about anyone else but I really don’t have much confidence in any “partners” who decide what I can and can’t see (about me and my condition), where I can and can’t go (on the internet) because those “partners” have decided that I won’t understand what I’m reading, I might get upset from what I’m reading or I might try to engage those “partners” in discussing the merits of what I’m reading. I intentionally left out “self-care” because this is not nor ever has been under any doctor’s control unless they want to move in with you.

    Partners shouldn’t keep secrets, but they do. Partners shouldn’t make decisions without you (“Nothing about me without me!”), but they do. Partners shouldn’t decide that you’re an idiot (not meaning any politically incorrect usage here), but they do. That’s not my definition of a “partner.”

    The doctor/patient relationship (call it a partnership if you want) is lop-sided at best. Doctors don’t have near as much to lose as do their patients. Pure fact, nothing else. Too many doctors appear to define a partnership as working together toward the same goal as long as they (the doctors) get to call all the shots. Not a partnership! That’s fluff surrounding paternalism. Merriam -Webster defines “paternalism” as “a system under which an authority treats those under its control paternally (as by regulating their conduct and supplying their needs).” Pretty much describes the situation, doesn’t it?

    There always was, is now and always will be a paternalistic side to being a doctor. Perhaps you’ve heard the one about “I’m not your friend, I’m your parent.” Same thing, can’t really do both well at the same time. There has to be a paternalistic (as defined) relationship between doctor and patient. Without it there is chaos. But a “true” partnership cannot exist here. A partnership in goals only is what we’re really talking about. But that’s not quite the same thing. And doctors being human too, though I have my doubts on a few of them, don’t want to give up this power. Not too many people in any phase of life attain power and then willingly want to give it back.

    But there’s good reasons for doctors to maintain some form of this paternalistic power. However, It needs to be tempered with caring, compassion, the listening to and sharing of ideas. After all, aren’t we always told these are our bodies? Aren’t we the (only) ones who will suffer the consequences? Please, no retorts of the doctor feeling bad at the loss of a patient or even being sued for malpractice…it’s just not an equal comparison.

    However, all of this, if done well, will lead to trust. When you the patient have trust, then you will willingly do what the (now turned paternalistic) doctor recommends (not tells, not demands) recommends. You’ll do it because you both hashed it out together. The only “real” partnership a doctor and patient can have.

    None of this can be rushed or pushed. If it is then you have dominance. If you have dominance and you don’t care for dominance then you likely need another doctor.

    • Well said. I have a partnership with my oncology radiologist enough where I get the scan report before the appointment, so I can raise any concerns. At first, he was hesitant in letting me see the scan or report; then he realized that I spotted some ambiguities in the report in his verbal explanation.

      For some reason, the reader is fixated on a tonsil stub. Doctors have often mentioned this during throat exams throughout the years. My ENT biopsied it-not even precancerous, yet the reader says that he can’t get a good read, because the table was at the wrong slant. Isn’t that nice?

      Remember that all partnerships are not equal-50-50. I consider this partnership to be 40-60- Of course he’s the 60%. My head oncologist is more 50-50. He’s working hard to make this a 60-40, and I’m letting him do so. These are 2 doctors that I really trust.

      My PCP 1-99, and I hate him. I’m doing everything to make it ZERO, because he is a Zero.

      • Thank you. Your point is very important about spotting ambiguities. The patient will always have good input (once willing to share it). This would be true even if the partnership was 70-30 or less.

  18. Dr. Salwitz – this might be a good column for your students to read as people discuss doctor patient relationships… the issues brought up here are ones that they need to think though and decide where they stand (and then be willing to modify that as they mature and grow as physicians).

    • Very true, Liz. I would have hoped he’d already done so. For a moment I thought, perhaps he was pulling a reverse psychology bit on us to get us talking about it. It touches a nerve. Then I read it again and thought…Nah!

  19. May I summarize? Doctors feel that they are in control of their practice because of their education, experience, great compassion, and their ability to control things,

    The comments here are that the doctor maybe unaware of what’s going on at his front desk. To him/her, the office is running smoothly, because his staff tells him so. I finally got a doctor to look at billing, and his bookkeeper was embezzling from him and some other doctors in his church. The trouble maker patients aren’t getting appointments with him. His clinic or HMO might have a problem with a small shared staff that isn’t well trained.or doesn’t care.

    The doctor is doing his best, but he’s seeing patients that are selected by a person that took an Internet course about making and canceling appointments.

    We hope that the doctor is listening to us and making decisions, and the doctor is listening to us and making wise opinions that are based on his experience, training great compassion, and his staff’s notes during the patient intake. The staff may not understand something like rhabdomyolysis, or .realise the patient has an incurable cancer because privacy laws keep this from the staff. The notes reflect this ignorance or a prejudice in the intake notes.The nurse sees hundreds of patients.

    A patient can have distrust issues with the doctor because of all or part of the above. A patient often checks the Internet to verify what the doctor is saying or to try to expect what the doctor will say about this. The doctor doesn’t have any idea of what sources the patient uses for their Internet research, or how the patient is processing the data.

    I feel as though I’m an aircraft carrier catapult, ready to take off in a 2 seat fighter, and the pilot doesn’t know if I can read the electronics or just a passenger going along for the ride. I don’t know how qualified the pilot is. I don’t know if the pilot has been fudging-doing little tricks to pass the physical-eye exam= to burnout in a doctor. I’ll end my nightmare here.

    • Very well put. Your second to last paragraph is right on target for the majority of patients. Doctors tend to take the most exasperating of patients and portray them as the norm. However, if the reverse is attempted by the patient population (exposing say a bad incident by the doctor or staff) that is immediately stated to be “an isolated incident” or an “extremely rare” one. It works both ways with neither side (not to set up an adversarial condition) being absolutely correct. That’s what the phrase about looking at cases on “a case by case basis” was really intended to mean. Isn’t it said that all of us are unique?

      Now to go look at what this “frozen turkey” post is all about…

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