To recap: I'm a type one diabetic with Hashimoto's -- both for about 32 years -- plus vitiligo, and a couple other smaller autoimmune isshooz, not to mention allergies. I've also recently (last 3.5 years) acquired chronic fatigue syndrome, which is suspected to also be an immunological disease. Basically, my immune system has fucked. me. up.
When you have diabetes and hypothyroid, your type of specialist is an endocrinologist (in the US, anyway. Germany is another story.) Endocrinologists (or Diabetologists in Germany) are doctors who deal with a lot of chronic and/or lifelong patients, and that necessitates ... well, let's let Wikipedia tell us:
Endocrinology involves caring for the person as well as the disease. Most endocrine disorders are chronic diseases that need lifelong care. Some of the most common endocrine diseases include diabetes mellitus, hypothyroidism and metabolic syndrome. Care of diabetes, obesity and other chronic diseases necessitates understanding the patient at the personal and social level as well as the molecular, and the physician–patient relationship can be an important therapeutic process.
You'd think that something that makes it into Wikipedia -- and has its own subhead, no less -- would actually make it into the real-world practice of endocrinology, wouldn't you? But really? Not so much.
I've been a diabetic/Hashimoto's sufferer for 32 years, on three continents, in three countries, in eight cities, and under the care of 13 diabetes/endocrinology specialists. Of these, only one was a good doctor (Professor Meissner of Berlin, Germany) and one was a decent doctor (Dr. Bohannon of San Francisco, who isn't really taking patients anymore.) The rest were folks I tolerated so I could get my prescriptions and tests.
So, what, in my opinion, makes a doctor good or bad? Well, I'll tell ya. And, as usual for me, I'm gonna do it with bullet points. Here's a comparison of "Bad Doctors Do" and "Good Doctors Do."
Big Fat Caveat: there are types of medicine which are very specifically fixit. I'm thinking orthopedic surgeons, sports medicine, plastics, maybe all surgery, ... even oncology to a certain extent (although maybe it shouldn't be. I dunno, should we look at cancer as a lifelong illness? Nobody wants to but ...) I'm not speaking to those kinds of doctors, who are being asked by patients and society very explicitly to fix a specific problem which tends to be localized. This is for all the other doctors, and especially the endos, who ought to know going in that their patients are patients for life.
- Problematize everything and want to fix the problem. I think this might be that the profession self-selects for people who want to fix problems mechanically, people who greatly desire prestige, or both. The media contributes to this by presenting us with narratives of good doctors who want to become doctors because they lose a loved one to a curable disease or catastrophic injury. The overwhelming glut of hospital shows (vs. private practice shows) mirrors our medical system's decline and the rise of HMOs. We're all viewing medicine as a case-by-case practice, in which patients only come when there's a problem, and tend not to come back. And again, the profession self-selects for people who thrive in, or at least desire, this kind of scenario. Thus, when a patient won't/can't live day-to-day according to the doctor's prescriptions for behavior and life-structuring, the patient is blocking their own treatment. Their lives/lifestyles are problems that need to be fixed, rather than human lives that treatment needs to be adapted to.
- Get frustrated when they can't fix things and blame the patient. If they're fixit guys they just get frustrated, and if they're prestige-hounds, they take the inability to fix things as an attack on their prestige in addition to that. In either case, the problem is a blow to their self-esteem, and they tend to blame the patient either directly (by telling the patient that they're doing things wrong and getting mad at them) or indirectly (by losing interest in the patient and refusing to put themselves out for the patient any more.)
- View themselves as the subject, and protagonist, of the patient's case. This is probably a rather subtle distinction for the doctor, but it's pretty damned glaring for the patient. In the doctor's mind, the doctor's thinking and actions are central to the case -- because the doctor's fixit action is the action that moves the plot -- and the patient's thoughts and actions, much less the course of their life, is of little to no consequence, because they don't have the medical expertise to understand their own bodies and lives. I think the problem may be that many patients also view themselves as camera fodder for a real-life movie about a heroic doctor. You should read the doctor testimonials on Yelp. The positive reviews read like episode treatments for a hospital show like E.R. or House.
- View patients as grist for the heroic doctor mill. Yes, everyone is the center of their own universe, and the doctor's perspective is one of a person who is in the office all day while different people come in and out. Yes. But, as a consultant, I had no trouble understanding that I was there to serve a less skilled client with my greater expertise, and that it was not the client's duty to give me opportunities to hone my expertise against their inexperience. The practice of medicine does not use the language of "consultant/client" and that's for a very deeply rooted and problematic reason: namely that our medical system doesn't view doctors as consultants and patients as clients. The subjectivity/objectivity of doctor/patient is all backasswards. Patients are there for them to exercise their doctoring on. A patient who insists on viewing things differently is a difficult patient. A patient whose disease won't behave the way the doctor expects is a difficult patient. A patient who wants to make her own decisions is a difficult patient.
- Don't listen to the patient. This is a problem with a number of facets. For example, many doctors I've encountered simply don't listen at all. They get impatient, interrupt, look away when you're talking, don't listen. (I had one doctor who stood at the door with his hand on the doorknob during our consultation. I had to call him back twice to finish telling him what was wrong.) But there are also the doctors who make a big show of having long intake interviews and long appointments, and give good bedside manner, but during that time, they're not really listening and it takes you a while to notice. (One doctor, touted as one of the best in the country, really made me feel heard during our intake interview. But when I saw his notes from that interview later, I discovered that he had actually written down the opposite of what I'd told him in the interview. He'd actually asked me yes or no questions, to which I'd answer no, and then he'd written down yes!) There are also doctors who listen to your answers to their questions, but dismiss extra things you tell them as unimportant. They determine what gets considered (by them) and what doesn't, and ignore anything outside of what they consider important. They don't trust the patient to articulate their own disease, their own experiences, and their own lives.
- Doctor by numbers. This is an extension of not listening. I understand that doctors are trained to operate according to protocols, and that the protocols are established by numbers and probability. I get that it works, especially in triage/emergency situations, or with patients who don't have long-term chronic illnesses and are often appearing with new symptoms for the first time. I get it. But we're talking about chronic disease doctors who see their chronic patients 2-4 times per year, every year, and are supposed to be helping these patients manage lifelong, complex, and mutable diseases. Doctoring by numbers encourages doctors to stick to what's probable and expected and ignore outlying manifestations, and atypical symptoms.
But for someone like me, whose entire life and course of disease has been atypical, this is a really dangerous way to treat a patient. I've had two doctors call me in a panic (only after taking a blood test) and refer me to another doctor because they had no idea what was going on with me, even though I'd been having weird symptoms for a while and had been asking them to work with me to figure out what was going on. (In both cases, they were simple, small things that they simply weren't trained to know about.) I've had another two doctors simply ignore a huge problem because their protocols didn't tell them how to fix it (which is how my chronic fatigue syndrome went undiagnosed for over two years.) They didn't even try to refer me to anyone else, or make any suggestions about how I could go about figuring out what was wrong. They just gave up.
- Block communication between themselves and patients. Chronic disease docs need to be available to deal with issues as they come up. Life is lived in between appointments. Doctor's answering services (as opposed to their office staff) used to be perfectly adequate to connect doctor and patient. You left a message, they called the doc immediately and conveyed the message, the doc called you back when s/he could. Easy. I never used to have a problem talking with my doctor within 24 hours of reaching out. Nowadays, with email, docs have something even more simple (and inexpensive) patients could use to communicate directly. But now, docs aren't using either: the answering service, or the free email option.
One doctor I've worked with used to have an email address, but then shut it down when he said that some patients were contacting him too often. Seriously, who does that? Who cuts off communications with all of his patients because one or two email him too much? (And does he not know how the delete button works?) This doc also takes a week to call back, if he calls back, and half the time, he doesn't. This issue of communication is directly related to viewing your patient as a guinea pig or a dependent rather than a client and decider. If you are a consultant, you can't consult without, you know, consulting. Consultants give their clients their phone numbers and emails. If you're a hero/fixit guy, on the other hand, you're probably thinking at some subconscious level that patients should be seen and not heard. You don't need the distraction and it only encourages them to think their thoughts and ideas and words are important.
- View the patient as the decider. Patient as manager, patient as life-holder, patient as protagonist, patient as client, patient as employer ... what have you. Patient as the agent in the case. The (very few) good doctors I've seen have all been very laid back in the examining room. I think it's because they know it's not their life or health on the line. They're just there to give good advice to grown-ass adults who get to make their own decisions and have to bear the consequences alone. So their job is actually easier than the jobs of hero/protagonist/fixit doctors whose prestige and self-esteem are bound up in making the object/patient/grist/antagonist/disease behave according to plan.
- Take active steps to empower patients to inform themselves. I can't tell you how important -- on many levels -- it is for a doctor to hand you an article or a slip of paper on which they've written down a book title or a website url. I can also tell you exactly how many have done so for me: two. Referring patients to outside information should be a no-brainer, but I actually think that bad doctors deliberately avoid it because they don't want to have to waste their time fielding the questions and theories that will ensue. There are a lot of other resources -- support groups, trainings, consultants, products, etc. -- that a doctor can offer or make known to you that most doctors simply don't. (In addition to the two mentioned above, only one other doc has offered any of these resources to me.) Perhaps they shouldn't be, but doctors are the primary source and clearinghouse of information and resources. We have no other. If the doctor does not act in this manner or instruct their staff to act in this manner, this service won't exist for patients.
- Treat the patient as the decider. Some doctors will tell you that there were other choices but that they chose this for you, without explaining what the other choices were. (Yes, this has happened to me, many times.) Other doctors will only present you with one treatment option, and will only tell you there are others if you specifically ask. Most of these doctors won't, or will only reluctantly and angrily, lay out the pros and cons of each option and sit still while you consider and decide. (I once insisted on making a decision for myself and the doctor actually gave me a pamphlet and left the room to visit another patient "while I was deciding," rather than sticking around to lay it out for me and answer my questions. When he came back and found that I, inevitably, had questions, he got impatient. This was for eye surgery.) I can't stress enough that it is not the doctor's job to decide your treatment for you. The doctor has no right to do that. It's the doctor's job to enable you to make an informed decision for yourself, i.e. to consult with you, as a consultant, and lay out your options and their pros and cons. If they have to spend the whole day saying the same things over and over again to different people, well, that's their fucking job, and they get paid a mint to do it.
- Give the patients plenty of time in appointments -- and make time for follow up phone calls. My wonderful doctor in Germany -- Professor Meissner -- typically made you wait 1-1.5 hours in his waiting room after your appointment was scheduled for. He took his last appointment at 4 pm, but people would be in his waiting room until nearly 7. And he took walk-ins every day and bumped scheduled appointments back for them. No one EVER complained, because everyone got exactly as much time as they needed with him. Sometimes it was ten minutes, sometimes half an hour. BTW, he only had office hours four days/week, like a lot of docs, but when he was there, he was completely there. He was available for phone calls but I never made them because our appointments were so thorough.
- View disease/life management as a strategy, with tactics, and one that has to be adjusted to fit each life. I'm not sure I need to detail this. It's the opposite of doctoring by numbers. But I guess I would add that they view disease management as a subset of life, rather than something completely separate from life, or something that life interferes with and shouldn't be allowed to interfere with.
- Ask you about your life, and follow up with detailed questions. Dr. Meissner would specifically ask, and Dr. Bohannon wouldn't ask, but would usually listen when I told her. I'd tell Dr. Meissner when I had a broken heart or when I was going on a trip, or if work was stressful or good. He always knew what was going on in my life in general (he took notes and followed up) and could ground his suggestions for management in the context of my actual life. He knew, and told me, that stress affected me physically, and that the course of my life affected how I approached my diabetes management. And his and sometimes Dr. Bohannon's suggestions for actual disease management tactics referred clearly and specifically to things I'd told them about what was going on in my life. Both of them gave me the party line about what I should be doing, according to protocol, but both listened when I said I wouldn't or couldn't do that, and helped me come up with compromises or alternative tactics to adjust to my actual life.
- Listen to you and think about the things that you consider important. A good doctor will realize -- and actually tell you -- that you know your body best. A good doctor will empower you to think and talk about what's happening to you and to use their knowledge to improve your own knowledge and understanding. Dr. Meissner took my every idea and thought seriously, even if some of those were quite ridiculous. When he didn't have an answer, he'd say so, and say he'd think about it. And he proved that he had by coming back to me in a later visit with an answer or a study or a suggestion. If I said something silly, he'd explain to me why it wasn't quite right. Dr. Bohannon often snorted or dismissed my silly ideas, but she just as often walked me through the why. Frankly, the bedside manner is a lot less important than the substance. Even brittle, querulous patients can tell when they're being respected and when they're not.
- Read and study and keep up with the field, and parallel tracks and make this knowledge available to their patients. Dr. Meissner was the head of the national diabetes association. Dr. Bohannon was heavily involved in research. Not every doctor can, or wants to, do this. But I think reading medical journals is less taxing and time-consuming anyway. Why aren't more doctors doing the reading? And if they are, why isn't the reading making it into their practice and their discussions with patients? Most doctors I've seen, you wouldn't even know if they were literate, because there was no evidence that they ever read anything (including your chart.) And it's not just their specialty, and not just medical journals. I've been given articles from mainstream magazines (because they're easier for a patient to understand) and also heard advice from good doctors that was gleaned from patient anecdotes and other sources. Funny thing about docs who listen to their patients: they hear really useful and interesting things they can pass on to other patients. Dr. Meissner would come back from conferences and tell me about the sessions he'd attended and what the takeaway was. Dr. Bohannon talked about what research was currently happening and what the implications of that research could be. They gave me ideas. They gave me grist.
- Have a "let's find out" attitude. Yeah, one doctor can't know everything. And if your symptoms are atypical (as mine often are) they could mean anything. I get it. But there's a difference between your admission of ignorance causing you to shrug and look away, and your ignorance inspiring you to find the fuck out what's going on. A chronic illness practice like endocrinology is going to have a lot of daily management of disease issues, where the doc has to help the patient adjust a standardized treatment protocol to fit their life. But it's also going to have some of the special issues that are individual and unexpected -- sudden illnesses or creeping symptoms that puzzle both patient and doctor. And these things are often easily diagnosed wrong. I've recently had a lot of experience with docs easily diagnosing something weird that's wrong with me, only to discover later that they were wrong. It's at that "you were wrong" moment that the true quality of a doc comes out. Do they shrug their shoulders and say, "I don't know what to tell you," or do they frown and say, "Hm, let's figure this out"? I can tell you right now which type of doc is the one who's actually going to be of help to you.
Okay, I know that Dr. Meissner operated in 90s Germany, where every individual was required to have health insurance, and there was a national insurance plan, government subsidized, that paid for everything: dental, eye, appointments, prescriptions -- everything. I know he had hella leeway and he fully took advantage of it. BUT. All of the other doctors I saw in Germany (and I saw a lot of them; the insurance allowed me to see as many docs as I wanted, for free, and I took hella advantage) were bad or mediocre doctors. Oh, I could tell you some horror stories. Point is: a good socialized medicine can make it easier for a doc to practice good doctorin', but it's not socialized medicine that makes a good doc. It's good doctorin' that makes a good doc.
One small note, and I know they've done studies on this and the majority feel the opposite of how I do, but: in Germany, doctors call the patients Mr. or Ms. Lastname. Here, until the last five or six years, my doctors have all been older than I am, so being called "Claire" by someone whom I address as Dr. Lastname isn't quite so outrageous. But now that I'm starting to see doctors my age or younger, the relationship implied in that naming inequality is starting to chafe. I'm the fucking client. I'm the employer. Either they give me their first name or they give me equal formality. Who do they fucking think they are?