To Know and be Known

A thought struck me when reading an excellent post on Warmsocks\’ blog.  The vast majority of responses to my recent posts on doctor/patient relations have been positive.  Yet a vocal minority of people have read what I wrote in a negative light – that I am somehow projecting my doctor arrogance into those posts and am patronizing people with chronic illness.
Warmsocks\’ interpretation of my posts was that I was asking people with chronic disease to act like normal patients and pay attention to whether or not they were part of the problem.  This is relationship 101; when there is a dysfunctional relationship, it happens because there are two people involved.  The times that I have really messed up in relationships have been largely due to the fact that I ignored my own pathological behavior and assumed the other person was the one who needed to change.  My experience teaches me that there are usually equal parts of pathology on both sides of the equation.  My job is to heed the serenity prayer:

\”God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.\”

As I was thinking about this, I saw a very striking parallel between what has transpired on this blog over the past few days and the subject of doctor/patient relations.  The people who are regular readers of this blog, those who know how I think (and are not totally terrified) will read my words with a level of understanding that new readers can\’t have.  They have a much larger experience with my personality, my writing style, and my overall attitude, and so can read me without misinterpreting what I am saying.  They know me, and so don\’t have to wonder as much what I mean.

The same thing is true with doctors and patients.  If you build a relationship that is non-adversarial, it will make listening a lot easier.  This definitely applies from the doctors perspective; docs need to listen to their patients, get to know them, and understand their perspective to be able to give good care.  When I see a patient for the first time, I have to guess as to what certain things mean.  The quality of the guess is dependent on my skill with listening and the patient\’s skill at explaining themself.  As time goes by, however, I can understand them much better through experience.  It is key that I do this based on what I know about the patient.  I have to have a relationship with them – a real relationship.  I have to know them.

The same thing goes for patients.  Going to the doctor is as much about building relationship as it is about receiving care.  The jerky docs out there are not going to be willing to accept relationship, while the sensitive docs will listen and open up much better.  But still, it is very important to figure out who it is that is sitting across the room.  It is important to put down agendas as much as is possible (I do realize it\’s not always possible), and to build relationship.  You need to know your doctor.

So, to those who are new to this blog I say, read other stuff.  You will understand me much better if you don\’t base your conclusions on a single post.  I will continue to listen and try to figure out if I am communicating badly (which is my responsibility as a writer) and correct where needed.  That is the benefit of social media – that people give me immediate feedback as to how good of a job I have done at communicating.

To those who have stuck with me and read regularly: thanks.  I thrive on that relationship as a writer.  I write to be read and write to be understood.  It\’s nice to be known.

61 thoughts on “To Know and be Known”

  1. This kind of discussion always makes me think I should do a better job of building a relationship with a physician. My health insurance status is spotty and intermittent due to my career situation, which is nobody's fault particularly, but I think that fact has resulted in me being unable to see an interaction with a doctor as a potential relationship- I only see it as a potentially financially devastating encounter. The doctor, whoever they may be, doesn't see it that way, of course, and I've had wonderful physicians who took very good care of me, but I am always too afraid of the cost to really go regularly or build that foundation of understanding.

    Part of this is related to a simple test a doctor I liked very much recommended a few years ago, when I had insurance- I got the test, it turned out everything was fine, but then I got a bill for over $2,000 from the hospital where the test was carried out, and spent the better part of a year paying it off. I never went back to that doctor- I couldn't get over the terror of getting that bill in the mail, and I couldn't explain what had happened without feeling utterly embarrassed. I just felt like she was clearly used to treating richer people, who could handle that kind of cost, and I was in over my head and didn't belong there. I've stuck to clinics and the like since then.
    Psychologically, that set me back years in my ability to see a regular physician without anxiety, I think. I'm not trying to make any kind of point, I certainly don't fault my past doctor for the whole situation, but it definitely destroyed the relationship I had with that doctor even so. I felt terrible about the whole thing for a very long time, and I still feel bad about it.

  2. I'm somewhat familiar, from a patient's point of view, with what you are saying. I wish I had known years ago what you are saying now. I had to learn it the hard way.

    One thing I have learned is to treat my physician with respect, like a fellow human. Smile when he comes in, call him “doctor” (he earned it), shake his hand warmly. When he takes time to ask me about something in my personal life, find an opportunity to ask a little something about his (and care about the answer). Just be a human and not only a patient.

    To tell you the truth, I'm not pretending when I do this. I like my physicians. They're decent people.

    I know I am sometimes coming to him with difficult problems, and nobody in a professional role likes being stumped. I don't want the stress of me being unfriendly or distant on his mind when he's already going to be bothered by not knowing the answer I've come to him for. I don't expect perfection from my physicians–I expect their best guess, the scientific method, hypothesis and experiment. I think of my physician as my “medical bookie,” someone with the knowledge and experience to figure out what's most likely to be ailing me, and what treatments are most likely to do good while being least likely to do harm.

    It took me a long, long time to come by this attitude, and my own medical care was substandard until I did. That was difficult.

    Thanks for writing, about this and everything else.

  3. I understand, I understand only too well.

    The problem is you DON'T understand how patronising you're coming off as or how you're ignoring the fact that a doctor and patient relationship is inherently unbalanced.

    The fact is there are “consequences” to us for daring to be sick, for daring to be informed, for daring to be intelligent, whereas a doctor may get away with being both arrogant and in flagrant violation of his sworn oath to first do no harm.

    There is not a band of militant chronically sick patients out there pushing doctors into being frightened sad little souls who just can't cope with us big bad crips, there is however a doctor culture that encourages doctors to belittle their patients, to mistrust what we say it feels like, to assume the position of “god” and to reign down “righteous wrath” on any chronically sick person who fails to get better on command like a “good” little patient or who has the audacity to actually want to be informed and to want to help decide what's best.

    We shouldn't have to come -crawling- on our knees to doctor after doctor hoping desprately to find the one in a hundred who actually knows how to treat a patient. We shouldn't have to pretend to be stupid just so doctors won't feel threatened by the fact that some of us are actually knowledgeable.

    We should be able to approach a doctor, explain how something feels, hear what he thinks it is, listen to his suggestions, ask questions and discuss our treatment.

    That is an equal relationship, and until doctors realise that the role of a tin pot god administering unto the braindead masses is no longer theirs to play, the system will continue to fail some of the most vulnerable individuals.

    All you are saying by your posts is “Feel sorry for me, I'm a doctor and patients make me uncomfortable when I can't fix them or when they know stuff, it's awful when I have to fix the problems caused by worse doctors”.

    Quite frankly, it's hard to feel sorry for someone who is merely “uncomfortable” when the other side of the equation is often in pain, discomfort, having their lives serverely curtailed or even dying because of the medical culture.

    You being uncomfortable won't chop an average of eight years of your life, chronically ill patients dealing with doctors who embrace the current medical culture do get their lives shortened.

    It's like a guy trying to get close to a raped woman but instead of recognising that HE needs to do significant legwork, if he was you, he'd be sitting around making it all about him and complaining that she doesn't trust him and won't hide the trauma or the strength she's gained to prevent him feeling bad.

    Basically, you're engaging in victim blaming and that is what makes me and others unhappy. We are not to blame for being intelligent and informed, we are not to blame for taking time to trust a doctor after we've been so abused by them in the past. We are patients and we want doctors to not only recognise that they are human but to respect that we are human and to realise that a little discomfort is nothing compared to some of the things other doctors have put us through.

  4. No, Dawn, you don't know me. Your generalizations about me simply are not true. You are reading through the eyes of someone who is looking for victim blaming. I don't do that. Check out the ratings on these posts. Out of 70 people who rated the letter to patients with chronic illness, 65 gave it a positive, 5 gave it a negative. The comments around the web and on this blog are mostly positive.

    If you followed this blog, you would see that I am an introspective and a people-pleaser, so I am always making sure I am not saying it wrong. I've read it over, and have asked a lot of people I respect (e-Patient Dave, Chronic Babe, and other patient advocates) and they don't see this victim blaming you see. I don't mind you insisting, since it makes me more careful about wording stuff well, but I just think you are wrong on this.

    Which is your right.

  5. It's true that people online don't know each other, we don't have personal aquaintance, we have only what the other person says to go on.

    Actually if you'd read, you'd notice that I was pointing out how you were coming off and how your actions appear, I haven't made any judgements of you as a person except to note that I do not believe you understand the patients point of view.

    Sadly I don't think you'll ever get it, perhaps you need to go talk to a chronically ill doctor, they do exist and they get treated even worse than the average chronically ill patient does. Doctors are even more uncomfortable when confronted with the idea that they like the rest of us mortals can also end up in the patients chair with no explanations or expectations of improvement.

    Actually I'm reading through the eyes of someone who is a chronically ill patient, I've had many doctors over the years and most have been bad, all I see is someone going “well patient's need to be more like X and they'll get treated better” when in fact the truth is that being more like X would probably result in deaths and longer times to get treated.

    You've given a doctor's viewpoint, but you haven't considered the patients it seems. You haven't considered how hard it is to find a good doctor, or the culture that fostered the doctor culture that causes so many doctors to be unable to cope with someone who won't get better if just given the right tablet.

    Basically before you lecture patients on what we must do to be “acceptable” you need to face the fact that until the medical culture changes, there is no way for the vast majority chronically ill patients to have a fair relationship with their doctors because either the doctor will be a bad one or the patient will come bearing scars that a good doctor will be able to understand and cope with.

    Oh and incidentally, I did used to do all of that, it got me a dislocated spine, severe facial and feet burns, several other severe injuries, no treatment for a torn tendon because I didn't have enough backbone to do anything but shuffle meekly out when doctors got bossy, and three hospital trips in a day after doctors kept sending me back out saying there was nothing wrong with me, only for me collapse on the way home and wake back up in the ambulance.

    I have a backbone now, if a doctor can't deal with an assertive intelligent patient who happens to be also chronically ill, that's his problem, I'll just find someone who doesn't have an ego made out of spun glass and who doesn't think that my mere existence is a crime against him.

  6. Dawn, I am sorry you are chronically ill and in pain, but I really think that you are using this to express some misplaced frustration. No, I am not a doctor. I am a chronically ill person who has had more than his share of surgeries and more than his share of pain. Having these diseases and injuries together with moving many times due to my employment and retirement has allowed me to meet and deal with a long laundry list of PCPs and specialists. I have met one absolute jackass of a doctor whom I was obliged by an HMO to visit for a year. Otherwise, I have found that walking into a doctor's office for the first time with a positive attitude and the desire to work with the doctor as a team member has resulted in both an excellent relationship and genuine progress toward alleviating, if not curing, what could just as easily have crippled me.

    “…if a doctor can't deal with an assertive intelligent patient who happens to be also chronically ill, that's his problem…” No, it is not. It is your problem. If you are as intelligent as you seem to be, you know that the doctor you abandon will not suffer one iota because you decided to seek someone else who will let you be in charge. You, on the other hand, will continue to suffer because you have chosen to make each medical visit adversarial.

    I do not always agree with Dr. Rob (as you may have noticed from some of my comments about some of his posts) but I would not presume to lecture him as a stand-in for all of the numerous people with whom you have had a bad experience.

    I wish you peace in your quest.

  7. dr. rob:

    i am a brand new reader and i get where you're coming from completely. you are very transparent, and you make excellent points.

  8. I have not been a regular reader of your blog recently, but really like your last few posts. They said a lot to me, and although I come from a background that is more medical than patient, I really liked and related to what you had to say.

    I'll be reading your blog regularly in the future, thanks for sharing. 🙂

  9. I am happy you tell me when you don't agree with me. Your comments are always thoughtful and well-spoken. Thanks.

  10. Dawn, you're right– patients do need a backbone and many of us have it ingrained to be timid around doctors. I had to grow one in a hurry when my first oncology consult did a wham bam thank you ma'am you need a mastectomy, and oh by the way let's check both of them to make sure we don't need to do a double mastectomy. This an hour after I thought I was sailing along to radiation. I felt like I had been sucker punched. I said wait a minute, I'm hearing about one for the first time and we've suddenly moved on to both? I voted with my feet on that one.

    But after that, I found an oncologist who treated me as a full partner and respected my intelligence. He told me he would support me if I chose radiation, even though he recommended a mastectomy. I ended up choosing the mastectomy and have no regrets.

    The good doctors are out there and I really hope you find one. The good ones welcome your questions and respect your concerns. Yes, I've encountered a couple who need to realize that “Because I said so” is not a valid model of patient care. But if I had to generalize about the medical culture, I believe most doctors are in this because they really want to help people, including Dr. Rob. I honestly took his comments about not being able to impress chronically ill patients as self-deprecating humor–taking a shot at that tin god culture that seems to have burned you so badly. You sound so angry in some of these posts that I wonder if you seem that angry when you meet a doctor. You have every right to be angry, and to be honest, but you also need to give the other guy a chance. Just tell him or her you've had some pretty bad experiences and you don't trust doctors. it sounds like you've been through a lot. Let him or her earn your trust.

    And one last thing—just the fact that you can be here, venting in this way to a doctor you don't even know and getting his side of the story, is pretty amazing. All of us blogging and arguing and sometimes agreeing and sometimes seeing things through the other person's eyes is kind of a miracle, if you ask me. When would I ever have been in touch with doctors in Houston or Florida or other women like me who've been through breast cancer, or a blogger I”m getting to know who has MS.

    I know I probably sound a little rah rah, and I am kind of a glass half full type. But I really believe most doctors are good, and venues like this are too.

  11. I am a new reader and I have enjoyed your last few post. I bring something Unique to the conversation; I am currently very sick and an inpatients on the ICU floor at a hospital in Denver. I have read the “letter” and used that information to help me with this stay, almost feels like I’m cheating or in away manipulating my health care providers into give me better care. It has been great care and I have been the “good patients”. My stay has been a 100% better because of reading your blogs, so thank you for that.

    Also after many encounters with many docs in the last few days I have created a group of friends trying to help me, not to say there hasn’t been a few “jerks” that totally suck, who have been excluded from my very nice VIP group. Sugar gets you so much more then vinegar, wish all your readers would “get it,” like you have gotten it from the docs side and I have gotten it from the patients side.

    Oh, and yes, I have been spreading your blog around this hospital, it’s very good with great info and just an overall good read. Thank you so much for all your time. I am seeing the human side of my docs and holding them to a new standard as with myself this visit and it’s making a world of difference.

  12. If I'm angry then I'm angry because the post I first read came off as “maybe if you acted better, you'd get treated better” towards chronically ill patients.

    It's no more acceptable to say to us “make yourself small and unthreatening so doctor's will treat you as they should” than it is to say to someone “be perfect, always have dinner on the table on time, always read his mind so your husband doesn't flip out and hit you”.

    Some of us have been through the wars and yes, this makes us wary of doctors but at the same bloody time we didn't call how we were treated down on us. I've never treated a doctor with less than respect, I'm always calm and polite with them, in return I've been bullied, threatened with the withdrawal of medical care if I fail to be “pleasing” enough.

    Sorry but my experience is most doctors are bad due to the god attitude which really needs to addressed by doctors. They're not the only medical professionals who can do this, I've got my share of hurts by people from other disciplines, I've met some downright spiteful individuals who work in healthcare unfortunately. Not everyone gets into the job to do “good” some get into it because it's good money but resent every moment they have to spend on it and take it out on patients.

  13. I'm glad you've had good experiences, not everyone is so lucky, some of us have had doctors who frankly took advantage of their “power” in the relationship to bully, harm and mistreat patients.

    No, it's his problem, if a polite intelligent assertive patient is something he is incapable of dealing with? He shouldn't be a doctor. If he decides to take it out on me because he can't stand the thought of actually dealing with the fact that he is human then he definitely shouldn't be a doctor.

    I don't expect doctors to be perfect, but a step from the kind of spite children are capable of is surely not too much to demand. If they're having such severe psychological issues with patients who don't fit their ideal of the god-doctor administering instance cures to the less than bright masses? They need to get that dealt with because that is a psychological problem.

    Basically Doctor culture needs to change, it needs to be seen as okay to be human and not a tin pot god, Doctor's need to recognise not curing someone as not a failure but as a challenge to improve the quality of someone's life, Doctor's need to see it as an actual partnership and they need to recognise that using their power to bully, cajole or otherwise dragoon a patient into doing what they want while ignoring the patient's wishes is patently unprofessional.

    I don't bully my clients into accepting what I as an artist think is best, I listen to what they want, make suggestions, tweak it with them and hopefully we come up with something that fits their brief but which draws on my knowledge as an artist. Should a doctor be any different?

  14. Wow Dawn!
    I have to say you have totally struck a nerve in me with this undeserved verbal assault on a doctor who is out there, every day, working not just for HIS patients but for anyone who takes the time to read his blog. I disagree 100% with what you are saying about THIS doctor.
    If you had read this “letter to patients with chronic diseases” with an open mind, instead of an anger filled one, you might see that he obviously cares more than you want to admit, acknowledge or attempt to understand.

    He wouldn't bother to take MORE time away from his practice, family and personal life to talk about the difficulties of treating patients with chronic illnesses if he didn't care, if he didn't feel frustrated at watching his patients suffer, if he didn't have empathy for them. Would he admit that ” we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that” if he didn't feel for us? Yes, us, for I am a chronically ill person too and since I am allergic to all the “big” pain medications, when I have surgeries, I suffer horrifically. But that is not my doctors fault and I digress.

    I am sorry that you have had some really bad personal experiences with doctors, you obviously have or you wouldn't lash out at someone so sincere about his own failings and in his desire to help “us” help ourselves. Because it is just as easy to be a “bad” patient as it is to be a “bad” doctor.

    Maybe you have never had a close personal relationship with someone in the medical field. If you had you might understand how extremely difficult it is: to watch human suffering every single day and not internalize it, to not second guess yourself, to not blame yourself for the patient that couldn't be saved, and to find a way to put the faces of the patients who you know will spend the rest of their lives in pain out of your mind so you can sleep at night. Do you think it's easy to work in the ER 16-24 hour shifts a month? Many ER doctors consider a good day, one in which no body bags were involved. Try shaking off a day that includes gunshot wounds, dead babies,motor vehicle accident victims whose families YOU have to tell that they may not live and IF they do, they may never walk again. I think that might explain the sense of detachment.

    Many great chronic pain doctors transfer to a different specialty because of the emotional toll of being helpless to remove their patients suffering. At least in the ER they usually never see the patient again, the primary care doctor sees his patients over and over. I lost the best of the best PCP to emergency medicine because he couldn't cope with the fact that nothing he did could end the suffering of his patients and seeing them all the time tore him up.

    Patients who come into a new doctors office angry and full of baggage from of all the doctors who “failed” them, are asking to be “failed” again, they're begging for it, because they never give the doc a chance! Honestly, the doctor doesn't know you. You don't know him/her. You can tell them whatever you want to, make whatever demands you like but a concise medical history with pertinent test reports, MRIs, CTs, dates of surgeries, ESI's, RFNs, a list of current meds and a REASONABLE expectation of new patient visit, will at least give you AND the doctor a chance to see if you can work together. And, don't expect him/her to digest all that info right then and there, make a second visit in a few weeks to follow up AFTER they have had time to review your information.
    Oh sure, you can go in demanding this, that and the medication you got from this doctor you saw that…. and I bet if you didn't get what you demand, you'd feel that your suffering wasn't taken seriously. Which may be the case with some docs but not this one.

    I don't know him but I do. In every word he writes he tells me that he cares, that he is frustrated by his limitations, that he wants to be part of the solution, he even gives you suggestions how to help him help you!

    I think you're just so angry that you have stopped trying to being part of the solution and as long as you come into an office with the attitude above and below, you'll continue to be disappointed because it's next to impossible to help someone who is convinced that they won't be helped.

    For your sake, I hope I am wrong. I hope you have found a calm, respectful, intelligent voice to advocate for the care you need and the treatment you deserve. I hope you remember that there is a fine line between assertive and onerous as the latter will get you no where.
    And I hope you never use rape as an example in such an inappropriate way again, it's disrespectful for the survivors and the people who love them and are trying to rebuild their lives.
    To suggest that a doctor is victimizing or abusive because HE hasn't done the legwork to get YOU to trust him is ludicrous and certainly does NOT deserve a criminal reference of the most despicable kind.

    I wish you good luck, good health and I hope you find a way to put the past behind you so it doesn't hinder your future relationships with those in the medical field.

  15. I wasn't that harsh!! LOL I am afraid I agree with Dawn as far as the medical proefession goes and that its the Doctors that NEED to change and not the patients.We are after all the clients!!I nots my job to sell the pullover to the sales assistant. I know its not exactly the same but Doctors at the end of the day are providing a service and I am of the opinion that they are doing a bad job of it most of the time.They have become complacent and arrogant and are treating patients without the necessary respect they deserve.
    However I disagree with Dawn about you coming across as patronizing I believe you to be sincere and wanting to help.I already pointed out the disappointment I felt that the tips were for patients and not for Doctors,but I do believe that you are reaching out and that is refreshing!
    I do think that Doctors aren't interested in building relationships with their patients,and I also think they have barely the chance considering the work load,long list of patients and time limits.
    None the less the Doctors are paid to do a job and as a patient it is not my job to please.
    It makes common sense to be polite,but what to do when you feel that your Doctor isn't listening to you? or is going off in a direction that you disagree with? What to do when you truly believe that he is talking out of his rear end? How can a patient protect him/herself against that? After all the Doctor write his diagnosis (opinion) down in our records and his word is taken as the last and official word,where does the patient get to have an opinion in all of this?
    The Doctors need to be held more responsible for their actions and reports and patients opinions should be voiced and recorded too.
    I am rabling I am sure,but Dr.Rob you are growing on me for sure!!
    Dawn I hear you,but I think sometimes because we have been hurt,shoved,pushed and judged so painfully hurt by the medical service we tend to close all doors and fail to let the good guys in.I feel the way you do,but am still trying to keep the belief that there are Doctors who really DO WANT TO HELP!!

  16. Well Doctor Rob, I'm a new reader, and do not know you, but I understand completely what you're saying…..and I long to have a doctor like you! It is very hard when you become a subject of our government program and are forced to go on Medicare. Choices are limited, and you feel that you are just a bother to the doctor.

    I have had a couple of doctors actually make me feel that they didn't want to see me because I was a “medicare” patient. I worked for a large corporation all of my working life and had good insurance, but the day I became a “medicare patient” I ceased to be the person I had been all of my life.

    I understand the reimbursement rates to physicians are terrible, but what are we supposed to do? The system is so complicated that most (myself included) cannot really understand the way our coverage meshes with Medicare.

    All I know is that between Medicare premiums and our supplement (retiree insurance that has become a Medicare Carveout in the past year), we pay right at $10,000 in premiums a year, and our insurance doesn't kick in and pay hardly anything until we've paid another $4,000 out of pocket.

    I don't really care for my PCP because he is not the kind of doctor who listens and cares, but efficacicously moves people thru his office. I would not know how to find someone else as most don't want new Medicare patients, and how can you know them before you are a patient?

    Since I've been around medicine and medical people since I was 18 years old (I'm 67 now), I have seen the deterioration of doctor/patient relationships, and I'm saddened by it. I think if we went back to a cash basis as it was many years ago, and people didn't expect insurance to pay everything, costs would go down drastically and doctors could again operate independent practices with a nurse (a real one) in the back, and an office person in the front…and we could afford to visit, and doctors would feel the leisure of getting to know their patients.

    I was a single mom of 4 for many years and my pediatrician visits were $10.00. I realize it was a long time ago, but in today's dollars, most people could still afford to go to the doctor.

    When I first heard about DRG's in the early 80's, I knew our healthcare was going to become corporate medicine, and surely it did.

    I guess I'm glad I'm older because the worst is yet to come with if this nationalized healthcare becomes a reality. (yes, I know…another topic)

    Well, I found myself musing….but I really do love to read yours.

  17. Dr. Rob:

    I thought for a minute you were replying to Dawn with that comment. I couldn't believe your patience with her after her attacks on you. I thought you were implying some interpersonal jujitsu. Then I see it was a reply to Old Geezer, not her.


    I'm sorry you've had problems with apparently every doctor you've interacted with.

    And I don't know how you found out about our physician club, membership in which requires us to promise to “belittle [our] patients, to mistrust what [they] say it feels like, to assume the position of “god” and to reign down “righteous wrath” on any chronically sick person who fails to get better on command like a “good” little patient or who has the audacity to actually want to be informed and to want to help decide what's best”.

    It's like the old joke: 'Doctor, I must be dying! Everywhere I touch it hurts. I touch my head it hurts, I touch my arm and it hurts, I touch my stomach and it hurts'. 'Good news, you're not dying. Bad news, you have a broken finger'.

    If in every (or nearly every) doctor-patient relationship you encounter seems to be dysfunctional, maybe you should look at the common denominator of membership in those relationships.

    And before you unleash your venom at me, let me break out the innumerable cards, gift baskets, and thank you notes I receive every year from my patients in defense. Cause most of us do it because we LIKE our patients, and it shows. Except for the ones who are un-likeable.

  18. For the record:
    1. I encourage patients – especially those with chronic disease – to look up things on the internet and talk to me about what they find. I need all of the help I can get, especially with those who are very complex. I have written posts and done a podcast on this subject.
    2. I think that office visit should center around patients, not doctors. My main job is to listen, not talk. My job is to empower the patient with good information from my own experience and training, but the illness is theirs, not mine, and the treatment centers around them.
    3. I realize there are terrible doctors who don't listen, who lecture patients, and who approach people with preconceived ideas of what the patient has/is/does. This makes me angry and frustrated, and I have blogged about this extensively. I won't defend them because they don't deserve that.
    4. I do whatever I can to not be one of those doctors.
    5. There are very very few people who have read my posts and think I am one of those doctors or that I defend them.
    6. We are spending far too much time trying to convince someone who won't listen.

  19. As one who's had all sorts of experience with doctors in my lifetime, I must say that over my years of reading your blog, my impression is that you are almost certainly one of the good guys…one who knows his stuff, knows where his limits are (we are only human, after all), and probably has a boatload of patients who really like his doctoring style. I probably would, too; from your posts I gather that you are probably just as busy as my PCP but from a younger, more open-minded generation that can appreciate and encourage patients who try to research their illnesses in an attempt to make sense out of things. (My caveat is to know your sources: I only research in places like the NEJM, JAMA, and other well-known, reputable publications online or in print.)

    One thing I've learned over the years (and I'm sure you have too, from the content of this blog) is that there'll always be some group of people who can't ever be placated, who always have something negative or mean to say and don't take the time to actually listen (or in the case of a blog, read) and grasp what's actually being said. I, for one, would love to have a PCP like you. Most of the physicians I've known who are anything like you (i.e., in the sense of being knowledgeable, compassionate, and with a slightly warped sense of humor, all of which are clearly evident to anyone who's read this blog for more than a day or two) have been specialists, unfortunate in a way but still great for this well-informed patient. Primary care is, unfortunately, a dying breed in this country…and until the bigwigs who run the financial behemoth that has become our health care system realize the value of “cognitive medicine” (which is what I'd call that ability of many PCPs to juggle a patient's 4 chronic illnesses, 6 medications, and a 12 page history in the EMR), our system will continue to fracture into a mess of unfortunate patients with 4 specialists who can't communicate with each other very well and thus the care suffers. This patient turned wannabe physician turned coder will read your musings here with full appreciation of our shared humanity, even across the wires and tubes of the internets, until they are no more. Here's to hoping that's for a long time to come ..even though I know it's probably tough at times to be both a prolific blogger and a truly awesome doctor simultaneously.

  20. “I was a single mom of 4 for many years and my pediatrician visits were $10.00. ” You left out the part about how ice cream cones were a nickel and a loaf of bread was a dime. The first sports car I owned cost $3500 brand new and it's current incarnation starts at $55.000. You would like to go back to cash basis. Nothing is stopping you. You do not need to pay for Medicare coverage and you do not have to rely on it. Just tell the doctor you want to pay cash and watch his eyes light up.

    If you want to keep that worthless insurance, you need to look into a different plan. I just have basic Medicare, have had major heart surgery and lung surgery. I have a PCP and three specialists and have never paid more than $3000 a year in combined premiums and out-of-pocket expenses. Its not the doctor that's been taking advantage of you.

  21. As a physician with chronic cancer, I've been straddling both sides of the stethoscope for 20 years. All these years I've been advocating for patients to clinicians and, with equal fervor, advocating for clinicians to pateints.

    Good health care depends on healing physician-patient bonds. Only 10 Seconds to Care (ACP Press) focuses on the relationship between clinicians and their patients. Short stories explore common dilemmas of patient care that are rarely discussed, such as the problems of false alarms, referring a patient to hospice without extinguishing patients' hope, and living well with uncertainty.

    Thanks for this blog that encourages better understanding on both sides of the stethoscope. No matter how medicine changes, the heart of healing lies deep within the clinician-patient bond.

    With hope,
    Wendy S. Harpham, MD

  22. Hi Dr. Rob,

    I don't have anything profound to say, but I've been reading your blog for a while and thought that maybe this would be a good time to simply tell you that I enjoy your writing and insights 🙂 As a PICU nurse on hiatus while my husband is deployed, I'm enjoying regaining some perspective on life outside the confines of medicine. I hope you continue to maintain your apparent balance (precarious though it may seem) and honesty. Thank you!


  23. Guest MD,

    It's not just me, I'm hardly alone in my experiences or having seen doctors lose their cool and blame the patient in the face of the fact that they can't cure something or don't have any idea what's wrong.

    As Rob said in his first “letter” doctors are afraid to admit to being human or to facing their limitations. Too many think they should be gods, able to dictate that everyone gets better, but they are not gods, medical science has it's limitations, the chronically ill patients accept that, why can't doctors? Often all we want is for someone to at least make us comfortable if they can't cure us rather than denying us all help. Yet frequently, we only receive anger directed at us as if we have deliberately gotten sick with something rare/incurable/hard to diagnose just to piss off that specific doctor.

    As I've said, it is a medical culture problem, thousands of chronically sick patients AND doctors who report the same treatment from doctors because they have something doctor's can't cure can't all be having “bad luck”. Hell chronically sick doctors often are treated worse, do you really think that every doctor who gets desperately sick with something that can't be cured or that is rare and hard to diagnose are treating the doctors who treat them badly?

    Also when a doctor/nurse I have not met before who hasn't read my notes decides to treat me like an animal and manhandle me or make unilateral decisions like the nurse who denied me the painkillers the doctor had prescribed after my surgery because she was annoyed me at daring to limp out on what was later revealed to be a subluxated hip to the nurses station and explaining in a quiet voice that I was in pain and could I please have something for it. That's hardly me either, unless respectfully asking for help is now considered being nasty to a member of hospital staff.

    The real common denominator is the “doctor as god” myth. There's nothing so hard to deal with as a doctor who is determined to have his first guess be right even if the treatment is killing the patient.

    I for one hope that you are never in the position of being chronically sick, but if you do end up in that position you'll understand what true venom is as your former peers turn on you like many chronically ill doctors report.

  24. Firstly, verbal is spoken. This isn't talking text.

    Secondly, I didn't say he didn't care, I question his understanding since his first post on this subject? Reinforces a really bad part of medical culture that is what leads to the vast majority of abuses committed against patients. The doctor as god mythos should be retired as the dinosaur it is, we need a new type of doctor who works to gain a balanced relationship with his patients, one who doesn't take advantage of a patient being open with him to hurt them.

    So long as doctors continue to say that the doctor as god is an okay thing for anyone to believe, chronically ill patients will continue to be treated poorly. We don't need a would be god, we need a knowledgeable human being who will do his best.

    To be honest, if he wanted to help chronically ill patients get better healthcare, his time would be better spent talking to his peers and getting them to learn to cope with the idea that they are not gods and that helping someone to be as comfortable as possible when they can't be cured is just as much a triumph as being able to cure them is.

    The doctors in a patient doctor relationship have all the power, and they can abuse it horrifically, more people suffer because a doctor won't acknowledge that they're only human than suffer because they're really a nasty mean patient. It's honestly uncommon for people to be nasty to doctor, most of us are nice, we just get the short stick because we're a walking (or rolling in my case) reminder that medical science and doctors don't know everything.

    Plenty of us go through tough times, we however don't take it out on vulnerable people, that's the difference.

    I've given plenty of doctors a chance, they soon let me down either by blaming me for the fact they couldn't cure me or by causing harm to me then compounding it by trying to bully me. Here's what you've overlooked, I don't demand things from doctors, I only expect them to listen and to consider what I have to say, if a doctor can't or won't do that? That's usually when I get hurt, I'm tired of doctors who feel they can't ever be wrong, even if the pills they give you to “fix” something aren't the right ones, even if it's common for it take a few attempts with different types to “fix” something, they'll still insist that you keep on taking the first ones.

    As I said, if he wants to be part of the solution, why doesn't he persuade his colleagues to give up the idea that they're gods, that would go miles further towards improving patient/doctor relations then demanding that we abase ourselves so as not to threaten a doctor's sense of superiority.

    I have a calm, respectful, intelligent voice in person, I used to be in awe of doctors and think they knew it all, in fact it was not just my bad experiences that proved they didn't but a psychologist who outright told me that doctors don't know it all and I shouldn't just blindly follow what they say because my file showed that it was getting me hurt repeatedly.

    The example is entirely appropriate, bad doctors violate our bodily integrity all too often, they destroy our trust, harm our self esteem, damage our minds, rape doesn't have to involve a twisting of sexual acts. No, I said nothing of the sort, I said that any doctor who isn't prepared to realise that they need to earn the trust of an individual who has been abused by doctors in the past rather than expect it blindly, is just the same as someone who demands that a raped woman trusts them absolutely and immediately.

    There are doctors who have won my trust, they didn't need to do much to get it, they just had to treat me as a human being not a lab animal. They don't complain about my intelligence because they know I'm smart enough to tell them what's wrong and how exactly it feels rather than leaving them to grope in the dark for answers.

    That's the difference, they talk to me as a human being, they aren't my friend but nor do they try to be a tin pot god, if I suggest something they don't think will help, they explain why they feel it's not right for me, if they have a suggestion I'm unsure about, they'll listen to why I'm worried and either suggest a different treatment or explain my worries away/explain why they feel it would be an acceptable risk.

    They don't think they're infallible because they have a piece of paper. They may not agree with me about everything but neither do they think that their degree means that a non-doctor can't stumble on the answer, or spot a connection they didn't.

    That is what makes for a good doctor imho.

  25. Nicely done. I also took offense to the crul harshness of Dawns reply. Good message, let the anger go and let the healing begen.

  26. No, Dawn. Verbal is from the Latin meaning with words. If this is an example of how you deal with someone over trivial matters, no wonder you have a hard time with someone who MIGHT, just might understand your disease better than you do.

  27. Verbal is used specifically to refer to the spoken word. While it can mean a “group of words” it's usually indicative of a group of spoken words. I happen to be a terrible pedant unfortunately, a lot of autistic people are like that.

  28. Even terrible pedants are sometimes wrong, but I now better understand where you are coming from.

  29. Thanks, recovering. That really makes me glad. It's no magic formula (just my observations and thoughts), but it is WONDERFUL to hear it helped.

  30. Ok Dawn, let's clarify.

    My use of “verbal” is of issue to you. Fine, insert 'written assault'. I use “verbal” as: “of or relating to facility in the use and comprehension of words”*.

    When I said 'a calm, respectful, intelligent voice to advocate…' I did not refer to “voice” as what is done with your vocals cords but the way you communicate, as in: “an instrument or medium of expression”*.

    You DID, however, refer to rape, as in, the physical violation of a person, as an analogy. As a woman who HAS been raped, I find it HIGHLY offensive and inappropriate. I also rind it ridiculous that you can use “rape” to mean violation but you get combative with ME over my use of “verbal” as written. Hmmm……

    I have a friend who, after trying to discover what was wrong with her for 5 years, was diagnosed by my mother through a column in Reader's Digest after she ballooned from 140 pounds at six feet tall to 225 pounds, in 3 months. She had just been seen and told by the “best” endocrinologist at UCSF that she needed psychiatric help for her issues with her weight and to quit trying to blame it on a disease.
    She has Cushing's disease. She had never had MRI requested by that or any of the doctors she had seen and refused to demand one, though I insisting she should.
    She WAS pre-med at UCD. She will likely die within the next few years due to her late diagnosis as she has had 5 brain surgeries in one (1) year and the cerebrolspinal fluid shunts are failing and due to scar tissue, a new one can't be inserted. And that is just a smidge of her story. She's 26, basically house bound and SHE is less combative than you!

    You keep referring to past doctors, past experiences, being mistreated and disrespected. I get that. I think anyone with a chronic illness gets that. I think Dr Rob gets it too or he wouldn't have written the column. I have had similar treatment from many doctors also but I know that when I come into a new doctor's office with all of that baggage, anger and frustration, the visit is likely to be unproductive because he/she doesn't know where to begin to try to help me and my attitude can make it difficult to find a place to start.

    As for the suggestion that: “his (Dr Rob's) time would be better spent talking to his peers and getting them to learn to cope with the idea that they are not gods”. In my opinion, that would be a waste of his time as those who believe that they are above us, will never be convinced otherwise.
    And it would be a great loss to those of us who value and appreciate his musings and find them a useful tool to bridge the communication gap with our own doctors. If you find Dr Rob's blog offensive or patronizing, I suggest you simply stop reading it.


  31. Well I find the fact that you are defending someone who panders to the idea that it's okay for doctors to think they're gods and get in a snit with patients who can't be cured to be highly offensive.

    Rape :-
    an act of plunder, violent seizure, or abuse; despoliation; violation: the rape of the countryside.

    I compared it because they are both violations that leave scars and to expect us to duck our heads meekly and to pretend those scars don't exist is not just excusing the root cause of them but also revictimising us. It is saying to patients, you don't have a right be frightened, upset or affected by the horrible things doctors have done to you. It is saying to patients that unless we behave just like the rest who believe the illusion of the doctor as a god, it is okay for us to be treated as lesser.

    Not speaking out against the root cause of the abuse of the chronically sick patients is the same as not speaking out against any injustice. Blaming the victims for being victims and telling us to cover it up, to hide in shame lest we be re-victimised is to say we earned what was done to us.

    Would you respond the same way if this blog post advised women not to wear provocative clothing to avoid the chance of provoking a man to rape them? or if it said that we should make sure not to excel at work or be attractive to avoid the chance someone might mistreat or sexually harass us?

    Yet, you sit there and apparently see nothing wrong with “be meek, pretend to be stupid, don't do anything that might upset your doctor or you'll get bad treatment”? Being given poor healthcare compared to others is discrimination, being given it because of our illness, our intelligence or the fact that we don't worship the ground the doctor's walk on? Is just as much discrimination and violation of our rights as the aforementioned examples.

    If a patient thinks they're god, they get sent to a psychiatrist, if a doctor does, that's considered perfectly normal? Double standards much?

    If I am combative it is because I see both a doctor and a lot of other people who from what they say should know better supporting what is basically little more than “do as your told otherwise you'll be treated badly” without considering that having your right to good healthcare violated for not being meek enough, for not being stupid enough and for not bending to someone's expectations is no different to being denied your human rights for failing to be a “good wife”.

    If I was the wife of an abusive spouse who denied me medical treatment for serious conditions, nobody would tell me to sit down, shut up and crawl to please him so he'd let me go to the doctor, they'd be railing against abuse and saying that nobody deserves such treatment for any reason. But because a doctor treats me like that, people will sit there and defend it?

    No wonder chronic patients have such problems, there's always plenty of apologists willing to blame the victim for the doctor's problem.

    If one doctor was convinced not to think he was a god, hundreds of patients would be helped. If doctors who felt there was a problem with the medical system stood up and asked for a shake up in how doctors are trained to remove the god complex? It wouldn't change over night, but it would change. If the problem is with the doctors then something needs to be done about the doctors, instead posts like this take the “easy” way out, they try to change the victim to please the problem, instead of tackling the problem.

  32. Oh brother…

    I am not : “defending someone who panders to the idea that it's okay for doctors to think they're gods and get in a snit with patients who can't be cured”, your words. I think Dr Rob is actually concerned about the patients and I find him humble, honest and generous.

    His words: “your understanding (this is where he admits you may know more than HE does about your disease) has torn down the doctor-god illusion. That’s a good thing in the long-run”.
    Isn't that what you said he should spend his time doing? That should make you happy. And where did he say: “be meek, pretend to be stupid, don't do anything that might upset your doctor or you'll get bad treatment”? those are your bizarre interpretations.

    As for your attempt to redefine the way you used the word rape, I'd have to say, epic fail. You did NOT refer to the “plunder of land” but to the physical, sexual violation of a woman. Offensive. Period.

    You said: “Would you respond the same way if this blog post advised women not to wear provocative clothing to avoid the chance of provoking a man to rape them?” How you jumped to this bizarre, horrific comment, shows me that you are unreasonable and will argue anything just to argue. The phrase professional malcontent comes to mind but that is not very polite of me so I will just imply it as you imply I am an “apologists willing to blame the victim for the doctor's problem.”

    You obviously YOU DO NOT know me. If you did, you'd know that I NEVER place doctors on a pedestal. They work for me, I can hire and fire them. You also wouldn't say: “you sit there and apparently see nothing wrong with “be meek, pretend to be stupid, don't do anything that might upset your doctor or you'll get bad treatment”? “. What? Uh, no.

    I am a FULL partner in ALL decisions made about every procedure, surgery and medication I take, right down to what post surgical meds will be used and if we use titanium or PEEK rods, cadaver bone or my own, what tests need to be run, what procedures to do and when to try a different approach. If I run into resistance I ask the doctor to explain his reasons, I explain my concerns and WE work out a course of treatment.
    My doctors have EARNED my respect and trust. And I have EARNED theirs by doing my research, coming to appointments prepared, using medications appropriately and treating ALL of my many doctors and their staff with the same respect and I expect and give in return. This is called partnership not “being meek and stupid”.

    I think Guest Dr hit the nail on the head when he said: “If in every (or nearly every) doctor-patient relationship you encounter seems to be dysfunctional, maybe you should look at the common denominator of membership in those relationships.”

    I have nothing further to “say” (write) to you as I do not believe you care to “hear” (read) anything that does not pander to your problems or skewed viewpoint.

    Good bye and good luck.

  33. I feel sort of caught in the middle in this discussion. I've had doctors with open attitudes like Dr. Rob's, but I can't say that's been the norm for me. The norm isn't necessarily always bad, but it's often just barely good.

    I've also experienced some of the same things Dawn describes and I am not in a situation where I can pick and choose a doctor. For the last 5 years, they've been assigned to me and changed often. Some have been horrible. A rather mild illustration is the PCP who chided me for mispronouncing “radio oncologist” and had me spell it for him again at the end of the appointment.

    Since I couldn't fire him, I just didn't go back for the follow-up appointment. Fortunately, my radio oncologist was kind enough to write refills for all my prescriptions during my follow-up there! I worried that it might be considered unethical for him to do that. It's encounters with doctors like him that keep me going.

    In April, I got “released” from that PCP captivity along with about 200 other patients. With so many of us looking for a new PCP, the doctors got choosy. I was turned down by 17 different docs before I found one that would take me. Since all of them questioned me about my insurance and my diagnoses, I'm pretty sure it was the combination that got me refused. (I have Tricare and I have several chronic conditions.)

    While I didn't think the post was arrogant or written from a “doctor as god” point of view, I did think it was naive in parts, especially 3, 5, and 6. Those things are often simply not possible.

    Thus, I can understand where Dawn gets her attitude and, since she mentioned she's autistic, can give her a lot of slack for not getting the nuances of social niceties down just right. And I happen to think her doctors should make an effort to do the same — it's the equivalent of one of her chronic conditions. And it's probably a lot more frightening to the average PCP than any of her other conditions.

  34. Being on gov't insurance isn't always bad.

    I've been on Medicaid for the last year, and I really only have 2 complaints re: the doctors I see. 1) It's easier to see doctors that my GP's office is already affilliated with, and 2) I have to keep getting new approvals to see doctors over and over and over.

    University hospitals tend to be better about taking gov't insurance.

    I know Medicaid and Medicare aren't the same, but I figure it was worth mentioning.


  35. You have a new reader (from Warmsocks) and I look forward to hearing what you have to say in the future and to catching up with previous posts. Thank you.

  36. Dr. Rob, i'm a long time follower. I have a non-related question that i would very much like to know.

    do you follow your own patients with newly diagnosed Type 2 diabetes, or do you send them to a CDE, or both? Do you follow your own Type 1 pts? Pediatric? Or do you send them to a pediatric endocrinologist to follow?

    i'd like to know because i'm giving a talk soon on health promotion/ self – management to a group of moms of little people, this Saturday, and i need to know what a responsible PCP does.

    thank you.

    Kathy (RN)

  37. I follow 98% of my Type-2 diabetics, but try and get them all to diabetes education (multiple times if needed). I also take care of most of my type 1's, but some go to endo. Since I am IM and Peds, I even follow many of my peds type 1's – especially teenagers. I do insulin pump management and have very good rates for my A1c. I am probably more aggressive than the average PCP in this area. The bottom line is that if a PCP has experience, Type 2 can be managed without endo, but the patients need as much education as possible. There are a lot of PCP's who are far too casual in their approach to diabetes and whose patients are not in the control they should be. I work hard to get my patients educated enough that they can make their own decisions. It is better for them and much easier for me.

  38. Yes, let's continue to heap scorn onto someone for daring to question the system. That's great way to show your compassion as a medical professional.

  39. Prefer Anonymity

    Hi. Are you familiar with the term “tone argument” as applied to discussions about race or gender or any of the isms that come with? I am guessing you're not, because when I look at the comments that are negative, I see people telling you you are making one, and you not understanding that is what they are saying.

    The tone argument is this: when you, person of color or woman or person who is poor, respond to an instance of unfair behavior which is a part of a larger system of pervasive unfair situations with an angry tone, you make it so the other person feels all attacked and embarrassed and defensive (and unwilling to help you out), when you could have chosen to be nicer about it and maybe they would have listened.

    I fundamentally agree that in a perfect world, relationships between people would be relatively equal and people's positions and experiences would always allow them to respond directly to the individual whose behavior was hurtful, so there would be no transfer of a person who has accrued a lot of frustration winding up lashing out at someone whose recent unwonderful behavior was perhaps unintentional or just unwise, but not deliberately nasty. Problem: this world is not perfect, and as you note, neither are any of us–and of course, there's no way to demonstrate that being nicer would have worked. There's no way for an individual to know in a given case whether if the other person is only going to hear the first ten or twenty words she says, whether she should take the chance on being nice with them and hope it works, or go with rage and at least get noticed, for better or worse. Being nice *first* and then moving to rage is at least as likely to end badly, and sometimes we (the we being whichever set of less-powerful individuals is in play) know from long experience that getting noticed is more important than being nice, or that if we're likely to be dismissed anyway, we would rather at least have vented. Of course this isn't ideal, and I submit that the angry patient isn't having any fun most of the time, either, but it's not because she's never tried being nice, and it's not because she knows too much or not enough or whatever. Not always, and not actually incredibly often.

    So, you're making a tone argument here. You're saying that if a patient isn't *nice enough*, she won't get good treatment. No, I understand you don't want to be, and you don't mean to be, but you are, because even though I understand you're not saying she has to be perfect, and you're saying you're human too, and I get that, the unstated implications of your post kind of work out that way. They are these: if she gets lousy treatment, well, maybe she should have been nicer, worked harder, traveled further, been more or less educated. There's no way to know whether any or any combination of these things would have worked, and as you note, her time in the office is limited, but you want her to gamble. With, in some instances, her life. And you're saying that the poor treatment she receives is maybe all or in part her fault even though because there is a power differential between her and the doctor (who can prescribe treatments she can't get on her own, and who can leave notes in her record forever) she can't control a whole lot of the interaction. And that's a problem. It's in fact, the *same* problem as when someone says, shaking his or her head sadly, that if only she had known better than to walk home in that part of town when in fact her walking wasn't the crime, you know? Please note, I am saying the problem (blaming the victim) is the same, not the action; it is not my intent to assert that rape or assault is totally the same as getting seriously crappy treatment from a doctor.

    Look, I have a job and a college education, and none of my ongoing illness issues are actually daily critical life-altering ones, and I STILL find myself feeling called out by your post as not being a good enough patient, because I do have a file three inches thick and a number of interactions with many doctors. I do NOT think it is my fault if I walk into an ER with a huge, fast-growing, excruciating infection on my face, and the doctor without warning jabs at it and in my attempt to not scream at him I have tears run out my eyes as I squeak out, please don't do that again. But I can't emphasize enough how badly I was treated for my presumption, for what he characterized as my attempt to prevent him from treating me. I do NOT think it is my bad behavior if I say, okay, so you want me to stop taking drug X, so what should I take instead for the also-acute problem it's treating, and the doctor says I should stop questioning him. And I do NOT think it is my responsibility to go find another emergency room in that case. I DO think this was this doctor's failure, and I understand that it wasn't anyone else's. But I also do carry that experience with me. I also know that if I have a painful emergency, I want to shrink away from a doctor close enough to poke, and that I can't take the time to explain that in detail. I carry with me the experience of taking my infant to an ER in the middle of the night because he keeps turning blue, being literally laughed at quite directly and sent home, and then having the child admitted for a week for the same problem six hours later. I carry with me the experience of having an on-call doctor tell me he's too tired to come in for what's probably not a big deal and if I'm so sure it's serious I should go to the ER and have them call him for a consult. I carry with me the experience of being denied functional painkillers on two different occasions, by two unrelated practices, for pain so severe I couldn't sleep, eat, sit, lie down, carry on a conversation–on the basis that I had been prescribed narcotics before (not recently. EVER.). So yeah, I go in to a doctor informed and hopeful and wanting to make this a two-way street, and I am aware of all these things I carry, but it's not my fault that I carry them, and it's not all on me if I find myself looking at one of those situations again and I just can't do it and I am less than perfectly kind and sweet, in the same way it would be not all on me if, like an acquaintance of mine who was once accidentally shot, I see a scenario that reminds me of one that went very bad and I start defending myself against a repeat.

    So. You're making a tone argument here, and that's what people are reacting to when they become defensive in your comments. I promise you that people who have to spend a lot of time at the doctor(s) don't by and large go in hoping to be antagonistic, and suggest that your suggestions are, to those of us who know way way more than we want to about our condition(s) and the treatment(s) thereof, more than a little patronizing. I understand your intent is to say these things would make it easier for you to do a good job and the patient should want that, but I also understand that for the patient in that position, you're asking a lot, and maybe asking more than they can do, and the implication that if they can't, maybe it's kinda partly their fault if you do a bad job, that's so so scary to someone who's already exhausted, already out of spoons, and already beyond frustrated, too.

  40. I didn't deny he was concerned about his patients, but he still reinforces and justifies a very bad part of medical culture. I think he wants to be a good doctor but I also see that he often slips into stereotypes which are damaging to patients far too often.

    If someone isn't part of the solution? They're part of the problem, and unfortunately he isn't part of the solution.

    “Be meek so you won't be treated badly” being wrong and messed up applies to many situations, including abusive ones, to be brutally honest, I just think you don't want to see how messed up the idea that patients have to “behave” a specific way or face discrimination is.

    Actually my current doctor is nice and most of the doctors I've had issues with? I'm not alone in being an ex-patient of theirs who wouldn't trust them to treat minor issues let alone major ones. So the defining factor can hardly be me.

  41. If I had had this experience:
    “taking my infant to an ER in the middle of the night because he keeps turning blue, being literally laughed at quite directly and sent home, and then having the child admitted for a week for the same problem six hours later.”
    As soon as the doctor said he was sending us home, I would have calmly (as calmly as possible) asked the doctor for his full name, written it down on the discharge paper he was trying to hand me (or any paper handy) and asked why, exactly, he wouldn't want to observe a child that is turning blue and tell him that I was surprised he was willing to take such a risk, because should there be complications, should my child end up with brain damage from loss of oxygen, or, God forbid, should my child die, I would hold him personally and professionally, responsible.
    I also wouldn't sign any discharge papers or do anything to co-operate with their incorrect assumptions.
    I would turn my frustration at not being taken seriously and my anger and being mocked as “the frantic new mom who's baby turned blue from crying”, into an assessment of his judgement and a warning to take me seriously.
    I know, hard to do when you're terrified, but to me, it's easier than going home and helplessly watching my baby turn blue knowing what may happen if you don't get help in time.

    The doctors and nurses, because hospital nurses seem to do more eye rolling than doctors in my recent experience, who decide that you “can't possibly be in that much pain so…” are making a judgement call based on something they scientifically can't measure by looking at you. They need to be called out on that. Ask to speak to the physician in charge, the hospital administrator, anyone who may help them see that you aren't malingering or exaggerating. And if you have someone with you, have them take notes, it's amazing what a pen and notepad can say.

    I am not suggesting that people run to a lawyer whenever a doctor is rude but serious conditions need to be treated as such and by internalizing ones frustration, the bad doctors get to keep being bad and patients don't get the care they need.

  42. I get your point (although I confess I am not good at reading long comments due to my own disabilities – see the name of the blog if you have questions). You say that I am implying that the patient bears blame for their bad treatment by doctors. To quote: “You're saying that if a patient isn't *nice enough*, she won't get good treatment.”

    Well…actually yes, that IS what I am saying to some degree. How patients treat doctors DOES affect their quality of treatment. That's human nature: we treat people better if they treat us well. That is your point as well, although in an opposite direction. You are saying that patients are treated crappy by docs and that's why they are jaded and angry at the medical profession. I agree with that, and I think doctors' poor treatment of patients has resulted in patients treating doctors poorly, which has resulted in doctors treating patients poorly…etc. Some doctors (and patients) are better at putting aside their own emotions and treating the other person respectfully regardless of how they themselves are treated. Some are like this, but many are not, and it is naive to think that doctors don't react to patients' attitudes positively or negatively.

    The vast minority of comments around the internet and on this blog have been negative (really, I follow links to who is talking about my posts) most get what I am trying to say. Those who don't (the minority) use the term “victim blaming.” I first recoiled at this because I was doing more explaining than blaming. But I guess I am saying that just because people have chronic conditions and sucky lives doesn't give them the right to act any way they want in front of doctors; in fact, I am saying that people with chronic conditions have more to lose if they ignore their attitude and behavior toward doctors.

    Sorry if that sounds judgmental. It was simply meant as an insight into the psychology of docs so people with chronic illness could avoid harming their own care. Yes, I do think the patient has some responsibility in setting the tone. The doctor has more of that responsibility, but patients, especially ones with chronic illness, can have a huge negative or positive effect.

    Who'd have thought so many would think they are exceptions to the golden rule? I don't want docs to get special treatment (read the post!), I just think people should always be considerate of others.

  43. Dr Rob, I just wanted to add in a comment that I haven't seen yet (I've read the comments on the initial “letter” but not on the two follow-ups, as its getting rather late at night for me): that is, to thank you and other doctors, good and trying-to-be-good, for actually being doctors. People aren't just born doctors; you made a decision somewhere that you wanted to devote your life to helping others, and I appreciate that you did.

    Sometimes some of you maybe don't do the best job of it, sometimes some have stopped trying, maybe some never tried and got into medicine for all the wrong reasons, but the fact that enough people out there decided to make this their career means that there *are* people out there to go for the ill. Imagine if all the doctors who are scared by their chronically ill patients never became doctors at all out of fear of the possibility.

    I don't have nearly the experience some posters have, mostly because I'm scared of restarting the doctor saga (yes, I know, I shouldn't avoid it — but the cardiologist said 6 years ago that if whatever was causing my symptoms wasn't addressed my heart could give out in 30 years, so that means I still have a good 24 years to work on it, right? Okay, _very bad logic_, I will do something about it in the next few years, I promise), but I've had both positive (like my cardiologist) and negative experiences (disbelief, belittling, really bad meds, etc). I'd prefer a perfect world, and I think we should still keep working towards the ideal, but I also appreciate that enough people became doctors that there are some good ones out there.

  44. It is really nice to know you, Dr. Rob. I’ve enjoyed your posts immensely. I’m one of those scary patients with multiple diagnoses who strives to create awesome relationships with her doctors because we can do really great things working together. Thank you for broadening my perspective and sharing yourself with me and other patients. We don’t mean to be scary (as I’m sure you realize), and I greatly appreciate more ideas to make my interactions more positive.
    One thing I expected to hear more about in your article is something my mother (a nurse) teaches me: what information is most helpful to give to doctors? I had a recent long-term bowel issue, and some of my recorded info was important to the GI and some would not have mattered to him. Ditto my Internist and Rheumatologist, the other team members on this case. I would love to learn more about how to present information well to doctors.

    Thank you so much for sharing all you shared. You really are a gift to your patients and to those of us who get to read your insights!

  45. […] It seems here that Dr. Rob is saying that if patients are treated poorly by their doctors it’s because they didn’t treat their doctors well enough. In the comments to a follow-up post, Dr. Rob makes this clear: “You say that I am implying that the patient bears blame for their bad treatment by doctors. To quote: ‘You’re saying that if a patient isn’t *nice enough*, she won’t get good treatment.’ Well…actually yes, that IS what I am saying to some degree. How patients treat doctors DOES affect their quality of treatment. That’s human nature: we treat people better if they treat us well.” [Link] […]

  46. I’m a sometime nurse (both coasts, several teaching hospitals) with a painful and debilitating chronic disease which I’ve had for over a decade. I’m also a writer, and a *former* software geek — because CRPS has impaired my brain too much to keep up with software.
    I read 5 of your posts in one sitting (and now I have to insert a crowbar under my butt to get off this chair) and I feel well-rewarded. I won’t come charging into your office demanding to become a patient, in part because I know you’re being read by at least some of those docs who need to read this sort of thing and then wonder, in the dark of night when all the outer voices are stilled, whether it’s time to change a few habits. Maybe find a new line of work, in some cases.

    You’re right here, in case nobody else has said it. I’ve learned not to come on too strong. I’ve learned to give them a chance to be heard, even if I know before they open their mouths that they’re on the wrong track entirely. It has to feel like a 2-way street, even though only one of us is being paid and the other will pay the heaviest price for mistakes. Despite being so lopsided, it is, indeed, Relationships 101 and — regardless of relative education level and alphabet soup after names — if you don’t treat your power-wielders with respect, they will shut you out, and that’s the end of it. Speak softly, and carry a thick folio.

    I’ve tutored an awful lot of people about how to handle doctors, medical records, and this ghastly system we are forced to depend on for our lives. I point out that, despite the evidence, these are human beings with pulses and mortgages and distractions galore, who have to come into work day after day and face another cataract of need.

    Those of us who get shuttled about among doctors don’t necessarily get to develop relationships, and have to find other ways to be understood and properly believed. It’s hard, and inappropriate, not to respond assertively when the overeducated, underperforming white-coated bozo in front of you has made 3 consecutive recommendations that would threaten your function or even your life, especially knowing that those recommendations are going into your file and will take years to obliterate, coming back to haunt you and threaten you again and again. Then, it’s certainly time to come on strong. Of course.

    I’m a huge fan of patient-created documentation, from timelines of events to symptom-tracking tools to customized pain-rating scales which specify mental and physical impairments at each level. “If it isn’t written, it didn’t happen” turned to the patient’s benefit.

    It helps docs come to terms with this complex case much better, and the delighted and grateful thanks I get when I hand it over always surprise me by their intensity. More patients need to do this. It’s impossible to remember and understand all I’ve been through in one interview — or 10. It also weeds out the real destructo-bunnies very quickly; they look at it like it’s homework from their least favorite class, or tell me I think about it too much (a fatuous remark to beat all.) It’s a great litmus test.

    I’m glad you’re writing. I’m glad you’re working to a new model. And I’m also glad you’re developing a usable, meaningful medical-records system. That’s about 40 years overdue. I hope you get great funding for it and make a mint, then perhaps set up a medical school for rehumanizing doctors…

  47. Hi again! After commenting the letter to patients, I came to read that as well. I was one to react critically also, but not negatively, It only took one post for me to decide you are a human and empathetic doctor, someone I would like to have on “my team”, just because you got really well our every day reality, and this is rare among doctors, so you’re probably going to end up in my favourite menu.
    But I think you missed Warmsock’s point: yes this is 101 relationship, but a professional one. Ego does not belong there. Once I take an assignment, I do it right whether I like the client or not, whether he makes me umconfortable or not (and my clients also are long-term relationships, so yes, there are some I really don’t like, but I treat their assignments as I treat everybody else’s: try to do my best). If the pilot of a plane had a passenger who questioned his competence or was disrespectful, that would be no good reason to be reckless and careless in his maneuvering the plane. It should be the same with doctors.

    Secondly, the point I wanted to make in my earlier comment, and I want to clarify here: yes, it is a dysfunctional relationship. Because, as you pointed out, often we are a “first” for you, or if you’re a specialist of the rare disease concerned, a 5th let’s say (and by you, I mean and have always meant not “you” personally but “doctors”, of course). While, unless we are newbies (and in this case the relationship is not dysfunctional at first, we come to you, like everyone else, convinced you are godlike). after some years, you are a 56th, our “core hospital team” and all the others we got to “test” before we find the “right one”.

    So, like I said yesterday, true, when we come to you as a first, we don’t trust you, and you can’t ask us to take your competence for granted. Because often the ones before you, when we did still trust them as a principle or didn’t dare speak out “too” loud, hurt us. And these were not pains of our ego, these were pains of the flesh, medical mistakes, aggravations of our disease and sequels of it, most of the time by not listening to us, weighing our practical experience against their theoretical knowledge and opting for disregarding our experience as “not possible”.

    Then of course, if at our first meeting you interrupt me after I explain my first symptom to give your diagnostic, then not consider all the others which don’t fit in (countless meetings), you patronize me (ditto) you treat me with rudeness, for instance you take a call back from my main doctor on my cell phone, exchange two sentences about my case then organise lunch and exchange news of the family for 10 minutes, before hanging up (on my cell phone!) without even asking me if I want to speak to him (also true story, though that was an extreme case of moronness), I will pull out my best act as an arrogant bitch, eyebrow raised and all.

    But I think it is the same for all of us : all it takes is normal courteousy. Here we respect you. Listening thoroughly, and being able to question your knowledge and your certainties. There, we trust you. And basically love you, because you happen to be our personal Friday, since you are a rare species. Believe me, my doctors (and nurses, I love my hospital nurses, really sweet and funny even though totally overworked) get chocolates for christmas and home-made cakes from time to time, I’ve got a book written by a another French blogger doctor waiting in a cupboard for the day my doctor goes away for a year in a foreign hospital, in 4 months (gasp!), and planning to get another copy for my GP next time I see her. And I don’t think it’s uncommon. When we speak of “our doctors” (i.e. the ones we sticked with), we all speak of them fondly, “team” being a word that pops up often.

    You would most certainly be one of “our doctors” we speak fondly of, so I think nobody took your letter negatively, really. On the contrary, you said things that we deeply feel and offered a bridge “doctors-patients”, and that, as a patient, I’m grateful for.

    PS : sorry for the possible mistakes, I’m not a native English speaker.

  48. Just wanted to say that I loved your letter and am one of those chronically ill patients you were referring to. I almost cried cuz I thought, here’s a doc who I wish was my own even though I hate to add a new ologist or pedist to my already broad bank of docs!! I am lucky to have 4 out of 7 wonderful docs!! The others I deal with and just know they won’t ever get me, but easier to just keep em and not fire em as of right now. They’re time is numbered but I only see them rarely. My GP is a doc just like you with compassion and a sympathetic ear who admits she doesn’t have all the answers but can direct me like a traffic cop to those who may be able to find me an answer! Thanks for your time to write the first blog (the letter) and the following ones …I read them ALL and didn’t find you putting anyone down or found that you were writing anything that somebody may mistakenly think you were needing a pat on the back etc! I love your insight as I deal with docs monthly (sometimes more than monthly) since I have a basket full of autoimmune dx’s along with fibromyalgia and they all have chronic pain associated with joints, muscles, and nerves!! Thanks again for your insight!! 🙂

  49. This is fabulous. I unfortunately don’t have extensive medical records, since I’ve been a long-time doctor avoider, due to some pretty horrible experiences with doctors, but the customized pain-scale and symptom tracking is something I’ll definitely start doing. I have a big appointment coming up in September with a genetic counselor, and I think a few months of symptom tracking will be of great use.

  50. You do very well in English! That wasn’t a short piece but it made sense.Good points. To quote myself: “only one of us is being paid and the other will pay the heaviest price for mistakes.” This is often overlooked. I’ve had to point it out explicitly. Ghastly asses, some of these specialists. “We’re only human, we’re only human” they whine, as if in excuse. All right, so why not act like one, eh? Save us all a bit of grief! /sigh/

  51. I’ve been in patient support groups and am friends with doctors. And I can just tell you that some people will not ever be happy with you no matter what you do. I hear the way the talk about doctors and when you ask them questions about their visits you get a real sense that they either walk in with an anti-doctor bias or refuse to hear anything they don’t want to hear. Years ago I saw a renowned psychiatrist. My diagnosis, according to him, was “major depression with strong personal and family history”. I asked him once if I was cureable. He just flat out said, “no”. I asked if there was hope for a cure on the horizon. He said, “not in your lifetime. The best we can hope for in your life time with the research in genetics is maybe a blood test that will tell us what medication will work best for you.” So I asked him, “Well, then, what is our goal?” He said, “The most alleviation of symptoms with the least amount of side-effects” I appreciated his candor SO much. I had a clear picture in my head of what we were trying together to accomplish.The thing is when I’ve told that story to people, you’d be surprised how many told me I should have stormed out and gotten a new doctor. They thought it was horrible. I can’t imagine what is horrible about having your questions answered honestly and frankly. The truth is some will only accept a doctor who gives them the answers they want to hear or agrees with what they already believe and the rest are quacks in their book. They will continue to go from doctor to doctor and claim they all have “god-complexes”.
    I know not everyone who has had bad experiences with doctors fits this description. I have had bad experiences with doctors who just simply didn’t want a chronic patient and treated me in such a way so as to discourage my return. I’m just saying there is a segment of patients you will not please.

  52. After a long search, I have found the right doctor for me, and take in all that you have said in keeping that relationship. Thank you for your advice.

  53. chronicpainUK

    Perhaps these posts serve as a reminder on how to appreciate a “good” doctor rather than pander to one of the many who are shall we say not blessed with bedside manner? I suppose there’s no part of medical training that says you can’t become a doctor if you’re an arse. The thing is that many of us will read these posts and apply the thinking to the doctors we have had experiences with. My experience is with a doctor who laughs at me, tries his best not to have to do anything, never responds to calls/letters (including from other doctors on my behalf or their own) and who has treated me neglectfully. Yes there are good docs out there, but not all deserve the standards of respect you outlined in the other post. At first, like the first part of this post suggests, I wondered what *I* had done wrong to get treated so badly. Then I found out there were more who had had to complain – but over here in the UK you’re pretty much stuck with what you get. Getting to know them is next to impossible as most won’t see you more than 3 times a year and then it’s for ten minutes or so at best – they’ve forgotten you once you’re out the door and often haven’t done what they said they were going to do until you’ve been four or five times. It took me 2 years to get an MRI because the doctor said he would order one and forgot each time. GPs generally have less opportunity to forget and us patients have a better chance of a relationship, which is good when you get a good one. I have built a good relationship with mine but he is still stuck in the realms of not being able to prescribe without a consultant’s say so and that consultant is, yep, you guessed it, the one who never responds to calls or writes back. I am sure you don’t mean it this way, but the implication of chronic patients as being “abnormal” (“..act like normal patients”) gets me sucking in my breath if I’m honest. This idea that most chronic patients have an anti-doctor viewpoint may be well founded in some cases (personally not a problem for me not matter how much they beat me down, I’m just still hoping for one that can give respect as well as expect it!), but what is coming across from these posts is that you are very slightly (and not massively or overtly) anti-chronic patient too. Perhaps you’re on the defensive for a genuine reason and for that I am sad.

  54. Kim Weiss Gordon

    I am new to reading your blog. First I want to thank you not only for your blog but for the obvious caring and striving to reach for improvement with patient and doctor relationships. Hands down you have already gone further and done more through your blog to enhance in a positive manner the experience of patient doctor relationships then a majority of doctors will do throughout their careers.I, too, have chronic illness. I have MCAS (Mast Cell Activation Syndrome) and EDS-H (Ehlers Danlos Syndrome-Hypermobility) with a cross of Classic and all the multi-system issues that go along with them which can be hefty. I have seen many doctors prior to my diagnosis who simple just didn’t want to go the extra mile to help me. I finally landed with a primary doctor who promised to stay by my side until a diagnosis was obtained. He kept his word. There were times I would return to his office after a referral to a specialist and after sharing my experience he would become just as frustrated and disappointed as I was myself. My first diagnosis was followed a year later with my second diagnosis which at that time my PCP (primary care provider) was honest enough to tell me that my case was more then he could handle. I honestly respect him for his honesty and the potential nightmare that could have happened had he blindly attempted to treat me. This occurred right after another doctor (specialist) who was treating the MCAS also said it was more then he could handle. Although I was scared and emotional that two doctors ‘fired’ me (LOL) I pushed on to find others. This experience actually opened my eyes to the fallibility and complexity of my disorders. I realized that I couldn’t just find any doctor, even based on recommendations from well meaning people. So I had to take another approach. I emailed doctor offices explaining my illnesses and asking if they felt they could work ‘with’ me in my care. I received an answer from a doctor that I hoped would be a good match. Long story short, he is not. So back to the drawing board. I have certainly learned that finding a doctor that I can trust and continue to work with is not much different then dating to find the right person to live the rest of my life with. By the way, I was successful in find Mr. Right and I’m happily married to him:)
    Your blog has actually given me hope that eventually I can find a doctor like yourself that is caring and truly wants to help his patients. I am a fair person and certainly understand that doctors are human and have bad days and good days just like anybody else. Thank you again for the extra miles you go and the care you give to those who entrust you.

  55. Connie Terpack

    As a retired RN and now a chronically ill person, I truly appreciated your perspective. I’ve had to deal with patients with multiple chronic illness, but never fully understood the difference until I became one. I was taught to teach about DM, CHF, edema, pain, etc., each diagnosis on an individual basis. But it’s not the same as when they are all rolled into one. My career ended when I was diagnosed with epilepsy. It hurt to quit, yet I knew it was for the best. I no longer could be the nurse I wanted to be.
    The medications for the various diseases caused their own set of problems. I acted weird at times. Certainly, my doctors had no idea what to do with me. I had been with my family doctor for 20 years, but I was his first patient with Myasthenia Gravis.

    One thing about being a nurse the doctors often think you don’t need to be taught anything, you should already know or can look it up. That’s not always the case. I knew little about MG and epilepsy. The doctor’s office doesn’t spend any time teaching. I went on line to learn about them. That was helpful to a point. I described one of my seizures to my neurologist, but he said it wasn’t a seizure. I requested a referral to take classes which he kindly did. The closest one is an hour away. I had learned about MG in nursing school, but had never had a patient with it until me.

    One of the most common problems I discovered with my home health patients was that they did not talk to their doctor. Countless times I asked, “What did your doctor tell you?” Their answer, “I didn’t tell him.” You know what? I find myself doing precisely the same, and have no clue why.

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