Informed Patient? Don’t Bet On It

Most patients don’t have any idea what they have agreed to let their doctors do to them.

Comments: 253

  1. Use the voice memo feature on your iPhone to record the entire information session with the doctor. Afterward, look up everything you don't understand.

    Note: in some states you must ask the other person's permission before recording a conversation. Not in New York, however.

  2. probably not a good idea to record your physician without saying so. This is a relationship based on trust, which goes 2 ways.

  3. But you should ask, because it is polite.

  4. That's a good idea, but unless you intend (and are equipped) to record covertly (and how many of us are prepared to do that?), know that the other person can refuse permission. When I consulted a doctor (in NY) for a second opinion, I had my iPhone in hand and said I'd like to record our conversation. He refused to allow it; if I had insisted, the consultation would have ended before it began. It was an unpleasant way to begin a visit I was anxious about anyway, and his refusal to let me record left me feeling less-than-confident in his medical opinion -- since he seemed more concerned with whatever he thought was in his own best interests than in my getting the most out of the consultation.

  5. To Mayo Clinic/Hospital proper and the American Healthcare Despair System in general:

    It has been 73 days since my breast lump was acknowledged @ Mayo.

    I agreed to a double mastectomy at the very outset with the surgeon.
    But the tumor was left in as it was then planned to treat me with massive drugs, for "suspicious lesions".
    Which I was determining I do not want, as I worked to teach myself what the drugs entailed;
    while the tumor was and still is in my body.

    I have never met nor spoken in advance of the surgeon, with the Dr/PCP, who has been agreeing to all this on behalf of Mayo;
    as documented in the Oncologist report.
    This stated-as-fact is additionally, even more so, troubling to/for me the cancer patient.

    Because it alludes to checks and balances.
    There are no true 'checks and balances' from a personal PCP I feel would have my back afforded me from Mayo.
    Particularly as a +65year old Original Medicare/AZSenior Supplement out-of-Phoenix Metro-area patient.
    And scantily-so by the general healthcare system.

    I have been navigating practically everything on my own at Mayo, from certain of the inapt appointments/ scheduling, with ever-consuming difficulty.

    At this point the only option, making sense to me, is to go forward on my own;
    relieving me by simply trusting that if I do have a cancer it is not out to kill me.

  6. I'd also like to observe that too often, even if you take notes or record the conversation, getting follow-up questions is like pulling their teeth. My experience (with my late mother) is that if questions don't get asked in that office visit, replies to your phone calls/emails for further explanation after you've looked up the terms you didn't really understand may not be returned in a timely way at all. I had to call the Patient Advocate at my mother's hospital to get the oncologist to call me back.

  7. Huh?

  8. I am sorry to hear that you have had such a trying experience. I hope things work out well for you.

  9. Are you joking? You want a person with cancer, who is facing chemotherapy, to be responsible for 'teaching' a doctor how to speak about treatment? I beg your pardon, but you have it all wrong: A patient with cancer is very ill and has enough going on without having to be in charge of teaching h/h doctor how to talk about treatment. Rather, suggest ways for doctors to teach each other about treatment language; ask medical schools to offer courses in how doctors can responsibly and clearly talk with patients-- and put the burden where it belongs: on those dispensing treatment, not those who are facing its benefits and consequences.

  10. As a former cancer patient, I heartily (though respectfully) disagree. I was my own best advocate, although I used some of the other techniques suggested here as well. And this is the reason to take someone else with you--after diagnosis I never attended an appointment alone, except for the first couple of weeks of radiation when I could drive myself the two hours each way. I asked loads of questions and found out that I was going to get much, much sicker before I ever started feeling well again, so I got all my information as soon as I could. None of my doctors ever stinted on time, either.

  11. That goes in a different paper. And even the sickest patient will benefit from a support person. The more sick they are the more they will benefit from the support person. The support person can be the one to teach the doctor.

  12. Maybe the doctor's advice can be extended to caregivers, or any trusted individual who has the patient's best interests at heart.

  13. Sorry to raise this issue with a doctor who seems so thoughtful about a patient's experience but with fee for services, isn't there an incentive to push for surgery or chemotherapy if that's how you get paid? I wonder if the consent process would be more patient-friendly if the doctor did not have a financial stake in the procedure .

  14. All professionals have to weigh the profit motive. As a mental health counselor, I had to consider how many sessions a client needed. The more sessions, the more money I made. But a true professional puts income second to the needs of the patient. I always did and so did the vast majority of my colleagues in private practice.

  15. Yes, yes, YES! I've done it all, have advocated effectively for myself and been an effective advocate as the 'accompanying other' -- but I happen to have an analytic turn of mind and a graduate degree in biological science. What the authors urge is not realistic for many people. What might work better would be to have a nurse-practitioner with good communications skills be present in the examining room with the doctor and then take ample time to 'de-brief' the patient and her/his family after the doctor has left and be available for followup questions by phone or email.

  16. Simply put, remove the profit motive from medicine and you will get:
    1. People sincerely interested in providing people's health care needs rather than people who are interested in enriching themselves at the expense of over-treating or mistreating their patients.
    2. With the profit motive gone or at least decreased greatly, patients would not have to worry about doctors selling them procedures they don't need.
    3. Single payer, with government very much overseeing the system is the way to go. Republicans are engaged in saving the disgusting medical insurance industry which should crawl under a rock and stay there.
    4. The richest nation in the world must provide total health care for everyone.

  17. Yes, definitely, putting the government in charge will fix the system.

  18. I SO agree! The best investment any country can make is in the health of its citizens!

  19. Despite headlines to the contrary, the VA is really loved by the vast majority of those who use it.

    There is no reason to think that single payer here would be any worse than the NHS in the UK or what is known as Medicare in Canada. Both systems get high marks from their users.

  20. Having gone thru this with both of my elderly parents, the only one cited in the list that really truly helps is "take notes as the Dr speaks." Then use your cell phone after the Dr leaves the room. Study up. Learn terms just used. Then note your questions down and ask the Dr next time he appears. Of course you have to know how to web search and avoid the chatty non-medical web sites (which are often simply wrong).

    The other suggestions are fine but if I was listening carefully they generally wouldn't apply.

    One thing though -- with shift changes in a hospital you will see without exaggeration several Drs and several RN's and then many others -- all of whom are making decisions about health care. Write their names down and talk to all of them at least briefly. Be polite. Yes it is exhausting.

  21. My in-laws are brilliantly smart and capable. Successful, wealthy, educated. They're only their mid 70s; however, and we have watched with concern as they try to navigate a fairly serious diagnosis. They don't seem to know what to ask or what is going on.

    When told to show up at 7 am for the 2nd chest xray in 3 months (and just 2 weeks before a CT scan), they don't ask what the xray will show that the CT scan won't. When we ask specific questions about the diagnosis, they say the dr didn't tell them. I find that hard to believe.

    It's confusing and scary to see them like this. They seem to feel they have it all in hand, but we're not so sure. So we stay out of it.

  22. Why don't you go with them to the doctor instead of "staying out of it"?

  23. I think the chest x-ray helps the MD and tech position the scanner to get the best detail. A 3 month old x-ray may not be as helpful. I am a layperson, so that is just my guess.

    Best of luck to your in-laws.

  24. This is very good advice. I'd add that you must have faith in your doctors--if one does not inspire your confidence, get another opinion, and if that doesn't help, get another doctor. Cancer is too dangerous for anyone to be in a situation where s/he can't discuss things frankly and have confidence in the treatment.

    Another suggestion is to only go to web sites that are sponsored by a reputable source--governmental or health care.

    And if you truly don't want to decide, and really do want to let the doctor make all the plans, check that out with your friends and family. There may be someone who will go with you and help with these decisions, or at least join an online support group to get information for you.

    I was not in a clinical trial, so thankfully didn't have a 25-page document to peruse. But I was a very active part of my care team, and as a result I believe that I was much better informed than most with my cancer (H&N SCC). I have been able to give advice to others in similar situations who have not gotten enough good information.

    But still I had a rare side effect of my radiation, one that my doctors had not seen before and were not prepared to help with. That's understandable. Eventually we worked it out together, though, my radiation oncologist talking to my ENT as I sat there, and eventually called in a GI who eventually solved my problems. We all learned something! Good outcome.

  25. "I'd add that you must have faith in your doctors--if one does not inspire your confidence, get another opinion, and if that doesn't help, get another doctor."

    That doesnt apply though if you are admitted into a hospital. You will be at the mercy of the attending Dr's. I DO see your point but it only applies to those who have a health issue that allows them to shop for Drs for a couple of months.

  26. Thank you, Susan. I wish I could correspond with you directly, as I am facing my own situation and I believe your experience could be of help to me. I am glad that you are doing well.

  27. Other questions that surgeons doing complex procedures in particular should be asked (better yet, they should provide this information without having to be asked):

    1. How good are you at this procedure, backed up by number procedures performed, comparisons with national statistics, etc.
    2, Am I an average risk, high risk or lower risk patient for this procedure?

    Also, I find it hard to believe that a doctor can ethically modify her response to "...people [who] don’t want to hear about potential bad outcomes."

  28. Treatment decisions are complex, and the people who dedicate their lives to making these decisions are often in disagreement. So how is a layperson supposed to fully understand indications/risks/benefits/alternatives (and their individual indications/risks/benefits) after a 10 minute conversation during which they may be highly stressed and distracted. As a physician, I don't believe patients can ever truly give informed consent. It is honorable that the medical profession strives for an ideal in which the patient is autonomous and informed, but its mostly a fantasy.

    I agree that patients have should know and consent to what is being done to them, and they should critically ask questions to do so - it is a free country after all (for now). However, the doctor patient relationship is still largely based on a fiduciary agreement. When you sign a consent, you probably don't acknowledge that you understand the intricacies of your procedure/treatment, you symbolically state that you trust that the doctor does.

  29. Interesting suggestions.

    Would be terrific if the writers would share their data about how well their approach works absolutely and compared to what they present as the "standard" approach.

    In my situation as a retired primary care physician volunteering in a free clinic, I primarily deal with patients with prosaic chronic problems and try to present to them the advantages of taking good care of themselves.
    But this is something that requires the patient to be in a listening mode, rather than just seeking a quick refill of the medication they have become used to taking.

    A very different situation from proceduralists whose actions can acutely put a patient in extremis or worse.

  30. Oh, so they do not know results if not taking current working-for-them meds? Did you ask them or just assume they are idiots? And anyone presenting in a "free care clinic" would likely have difficulties "taking good care of themselves". Great service but revise attitude.

  31. As a (science) teacher with a background in actual science, you're right that teachers are evaluated on IF a student can add after being taught.
    And this is wrong.
    Teachers who go in and teach low-income children who live in chaotic homes with parents who work night shifts or stay up all night fighting, are unfairly penalized because they wade into the muck (with their college degrees) to try to lift the neediest kids for whom learning is nearly impossible out of poverty.
    Teachers and schools are not failing kids; ineffective or negligent or flat-out bad parents are failing kids by not providing them with the stable, school-centered environment kids need to pass today's state tests.

    Apply that truth to medicine, btw.

    As for doctors, my thorough science background enables me to understand what the dr is telling me, but I still go with his expertise in most cases. With studies about statins, however, I argue because I don't trust how the studies are conducted and what exactly the controlled variables are.

  32. Sadly relationships with doctors can become adversarial once you start raising questions. Many tests, especially pre-op tests, have no basis in science. The words "preventive medicine" are deceptive; at most you have risk reduction. Doctors get defensive and angry when you quote medical journals. And about 30% of medical treatments are unnecessary and wasteful.

  33. As a patient advocate I was eating up your words and then I got to the recommendations and the air went out of the balloon for me. Today, one of my clients who is an MD/PhD, walked me through the side effects shown on the patient literature for a drug he is considering. At a meeting last week with his physician at a highly respected institution like The Cleveland Clinic, we asked about unexpected side effects and none of the possibilities raised in the patient literature were raised, thus providing insufficient informed consent. He never mentioned the black box warning, for instance, even though we prompted the discussion. When I suggested that we loop back with the doctor before proceeding, my doctor client was fearful that there would be repercussions to his case if challenged.

    Pharmaceutical companies must submit their package inserts to testing of grade level communication and the FDA requires them to modify the writing to be understood. Newspapers write to a fourth grade level. The onus is on you, doctors and hospitals, not the patient. Left to them and the problem will prevail.

  34. As as a breast cancer survivor, nurse, heathcare executive, frankly the physician needs to burden should be on the phyician to provide the booklets, videos, common language. I do agree that a patient should bring a support person with them to take notes and the oatient should always get at least a second opinion, perhaps even a third. I obtained second opinions on my breast surgery, medical oncology component and even my pathology slides. For the most part all the various specialists were pretty much on the same page, but that is not always the case.

  35. And have ONE advocate that every health care professional knows to be your advocate. When my mom was first diagnosed with breast cancer I had multiple people help me out (I live a 2 hour plane ride away). While they were all very, very helpful ultimately I had to move in with her and assume 100% of the health professional interface. Things get lost between the cracks, wires crossed, nurses or doctors confused (who's her daughter?). One voice, advocating for you and consistent is important.

  36. And that one person should not be intimidated by doctors.

  37. This shines a light on a recent experience. I consulted one of our hospital's podiatry surgeons about a bunion and hammer-toe, on the same foot, both of which were getting more and more "deformed" and painful. He agreed that surgery was the best solution and we set a date. When I arrived at the pre-op consult, he explained in considerable detail what the procedure was going to be. It was somewhat technical. I listened attentively, I thought. We discussed a couple of small items and then he said to me "Here is the consent form. Turn it over, and on the blank side, write out what I told you about what the procedure would entail." Ye gods! A quiz at the end of the lesson! He was kind enough to leave the room for several minutes, and it took a lot of effort for me to recall many of the specifics. He read it and said "Good. That's better than a whole lot of patients would do." I didn't ask if patients were allowed do-overs. Hindsight says that the more useful quiz for me would have been about the brief discussion of the 6 week post-op recovery. But when it came to informed surgical consent, the quiz on the procedure did the job!

  38. It takes me a while to process what I am told. Yesterday my oncologist told me that my LDH, a very imprecise tumor marker for lymphoma, was elevated. I nodded and asked no questions. When I got home, I sent him an email asking if the result was in the normal range, what the trend has been for my LDH, and whether the elevation signaled a concern for transformation of my lymphoma to an aggressive type. He wrote back today, answering all my questions and alleviating my concerns. I am fortunate to have an oncologist who will respond to email. I am sure that I am not alone in needing processing time, so doctors should expect as routine to get (and answer) questions after patients have a chance to think about what they are told.

  39. This relates well to how I process as well - we like to think first! When the new information is pretty complex, or simply completely new, it takes time for most people to gather their thoughts, perhaps do a little research, and ask the right questions.

  40. It would be nice if this was all it would take but the truth is that many doctors are horrible at communicating and the healthcare system makes it worse. I am a third year medical student and often experience this while receiving medical care. Although doctors who do not communicate or don't communicate well are part of the problem, the real problem is the Medical Care System. We should not let the communication of anyone human being be the sole thing we have to rely on. Informed consent documents often become 25 pages legal documents and not a real form a communication for our patients but a legal cya. We can do better and we need to do better at creating systems that support good doctor patient communication.

  41. Having helped shepherd my elderly (90+) parents through a range of medical situations, besides asking what the 10 experts would say, I recommend asking the practitioner "what would you do if you/your mother had this condition?"

    It's been surprising sometimes to see them thinking about that apparently for the first time.

  42. It IS the first time that they have thought about someone in exactly the circumstances your parents are in.

  43. Ha ha ha. As an informed patient, I do ask questions. I asked about outcomes-"We can't tell you that-every case is different." I asked if they could recommend literature for me to look over to understand the procedure better. "No, I don't do that." I think, "Why, if I understand how it works, will it spoil the magic." I'm left not understanding--should I do it or should I not." Ultimately--always remember--nothing works as well as what your genes supplied you with initially. And--I love this folks--you cannot see the outcomes of the surgeons handiwork, though of course the hospital keeps minute notes on every move he/she makes. More about spoiling the magic. Oh--is the doctor going to use this or that medical device because he/she truly believes it is the most effective--or do they receive emoluments. More magic, more spoiling. They don't want you to be informed.

  44. Many hospitals have medical libraries, often including a "consumer health" service. The librarian can get you literature that will help you understand better. Ask if the hospital has a librarian who can help you. And if the answer is no, ask why not. Think about this - the role of hospital librarians is to purchase, manage, and retrieve information for the doctors and other hospital staff to use for continuing education, decision-making, problematic diagnoses, etc. Oftentimes, they extend those services to patients and their families as well. Many hospitals are cutting that service to save money. This is short-sighted, and dangerous.

  45. Hi: I don't advertise this but I happen to be a researcher. When the doctor told me, "No, I don't do that," I went home and researched it myself. I believe PubMed is now available to all (I'm with a college, so I have advanced resources). I do read peer-reviewed journals in that specialty and it's still confusing because there are no meta-analysis. I end up at present going with my "gut" feeling--this is not a good idea for me right now. And I get the impression that my doctor is angry with me for rejecting her advice.

  46. We need more thoughtful articles like this one, pointing out that a patient cannot just assume that the doctor has their best interests at heart, or even knows what their best interests might be. Unfortunately there are plenty of doctors who haven't learned much since their days in medical school, one or two or three or more decades ago--they are not curious enough--but that doesn't prevent them from prescribing dangerous meds, for example.

    Passage through medical school doesn't require the highest IQ's, and an MD often achieves more by hard work than brilliance. As technological advances are made, the "general practitioner" has trouble keeping up, and a better system is needed to ensure the best health care. Perhaps making the nurse practitioner or physicians assistant the gate keepers who can assess the patient's problems, then refer them to a specialist is a better solution.

    Several years ago I went to the hospital with "lone atrial fibrillation" which persisted for 22 hours. I was exhausted by the time I converted to sinus rhythm, but the cardiologist on duty at a large hospital told me I needed a pacemaker. After haranguing me for over an hour, the pacemaker was surgically implanted the next day. Several months later, a Mayo cardiologist told me it served no purpose and turned off most of the functions--but it cost Medicare $63,000!??

  47. I think doctors have a tendency to "inform" the patient about the main event, such as a surgical procedure, and to ignore or gloss over what the doctors consider ancillary matters or "standard" procedures. Anesthesia is a good example. Not only should possible side effects and aftereffects be explained, but a patient should be _asked_ whether he or she has any special concerns, and _options_ should be presented. Will intubation be needed? Would it be used if the patient were an opera singer? Or in the surgery itself, would the surgeon deal with the incision differently if the patient were a swimsuit model? All too often, patients have rude surprises after treatment: side effects no one mentioned as risks, or the discovery that other ways of handling the treatment were available that they would have preferred if they had known about them. I agree with the other readers who have said that the responsibility here lies mainly with doctors, or with other medical professionals who should be given the task of fully informing patients. "Caveat emptor" is not ethically acceptable advice to give patients.

  48. Absolutely. Just because certain side effects or complications are 'standard' and most recover, the patient needs to be told. Those very same trickle down issues to the "main event" may be the tipping point for the patient to choose another option. And the patient deserves to know, however mundane it is to the Dr. This alone might avoid so much dissatisfaction (even liability) wrangling later, simply knowing what to REALLY expect.

  49. Patients will never understand and realize. Words and pictures can't convey what is going to happen.
    The only patient who has a chance to be truly informed is a physician in the same specialty, who has done the procedure, and has had it done perviously on him/herself.

  50. I'm a resident at one of the New York hospitals that serves poorer patients, and as at all hospitals most of the responsibility of informing and communicating with patients lies with us. In truth, the idea of "informed consent" is a farce. There is no way that in a few minutes you can truly make someone with no medical knowledge understand what has taken you years or decades to learn.

    Many times people are emotional and even less able to take in information or make rational decisions then they would normally. Imagine if your house is collapsing and the engineer is tasked with describing the technical aspects and risks and benefits of various techniques to support the foundation. I can't speak for others but I'd be totally overwhelmed! I've spent more than 30 minutes talking to people in the simplest of language only to have them confused about the most basic point.

    The problem is actually even worse at hospitals that serve wealthier people, because they expect more of an explanation but do not have the underlying medical knowledge to comprehend it. Even when they do understand, decisions are based more on a gut feeling then evidence, which is, by the way, completely understandable. This is not a criticism or insult of patients, just a description of reality.

  51. You make an important point about wealthier patients. Patients with lower status are more likely to accept that their doctor knows more about medical treatment than they do. Higher status people are used to having their opinions respected. This can work against them when they deal with an area outside their expertise. Anti-vaxx sentiment in wealthy suburbs has been fueled by upper middle class parents who are confident that, despite their ignorance of statistics and biology, their liberal arts college educations entitle them to challenge medical fact.

  52. You might wish to go to NVIC dot org to educate yourself about statistics and biology from trusted sources than mock those with liberal arts educations.

  53. Good points.

  54. an addition to my previous comment:
    If you are among the patients who write everything down and research your or your loved one's conditions good for you!!! However, please realize that you are in the smallest of minorities.

  55. The real culprit here is the fear of malpractice lawsuits. All the technical language and all the legal language is drawn up by lawyers and doctors seeking protection from being sued. And having the patient demonstrate understanding is just another way of protecting the doctor. Instructing patients how to understand what should be understandable in order to immunize the doctor against being sued is kindof offensive.

  56. The sick joke of this is that doctors are damned if they do, damned if they don't. Fail to obtain informed consent, and it's an automatic loss if a malpractice suit is filed. Obtain informed consent in which a specific bad outcome is listed as a potential complication, treatment leads to bad outcome, malpractice suit ensues, doctor points to informed consent form, patient just says "Oh, I didn't understand it" and the suit goes forward.

  57. Every doctor, clinic, hospital should have someone on staff or on call that could sit down with a patient and explain to them what procedures or tests that have been recommend to them are really necessary or worth the cost. In the meantime patients are left to their own decisions as to what is or isn't needed. Seniors especially need such assistance.

  58. That would be one of the things that the doctor does, if doctoring well.

  59. “Ask for best-case, worst-case, and most likely scenarios, along with the chance of each one occurring.”
    “Chances” are truly meaningless. In 1999, I was diagnosed with a disease which I had had a “2 to 3 in a million” chance of developing. According to some reputable sources, I had a 0% chance of being alive 10 years post diagnosis. I was listed for a lung transplantation. At the time, about 30% of people listed for lung transplantations died on the waiting list. I received the gift of new lungs in 2003. At the time, the post lung transplant 5 year survival rate was 50%-60%. It has now been 18 years since my diagnosis, 14 years since transplantation… and I’m still alive.

    “Ask if you can talk to someone who has undergone the surgery or received the chemotherapy”…
    As a double lung transplant recipient, I met many others who were to undergo or underwent the same surgery. Some had a three week hospital stay following their surgery, and others who had a twelve month hospital stay. And of course I met others who ultimately did not even survive 10 days post transplant. Taking care of both my brother-in-law and my sister in the course of their terminal cancers, and meeting many other patients at their cancer treatment centers, I have found that people’s responses to the same chemo can vary widely.

  60. This is a good example of the data being necessarily historical. It is not possible to give specific risk for a current treatment. At some point we have to go with the physicians' judgment.

  61. Bill R, I agree.
    Even if you get a differing second opinion, you ultimately have to decide to trust either one or the other's judgment. Who you decide to trust does not necessarily depend on their objective skill, but whether or not you subjectively "like" him.

  62. Chances are not meaningless. They are uncertain. Hence the name. Its like the paradox of the lottery: if you enter the lottery, you will definitely not win. But someone else definitely will. Get back to me when you win the lottery, okay?

  63. Your article assumes everyone is an educated patient, interested and engaged in their disease state as well as thoroughly understands it and researches it. Unfortunately this is not the average person.

  64. And you know this because?

  65. No. The article assumes that IF you care you can help yourself, and IF you don't care, that's okay too. Part of IC is respecting autonomy to be different to how the doc thinks one should be.

  66. This is not one of Dr. Sekeres' best columns - I don't think that self deprecating cynicism helps in discussing this issue.

    Additionally, I don't find that it's all that difficult to explain key procedures in my field with clear, "lay-person" language. Particularly on my 1000th time discussing, say, the modes of renal replacement therapy (RRT). It DOES however take multiple clinic visits to cover these issues adequately. For one thing, for the first few visits discussing RRT or other serious, complicated subjects, patients are still in shock that their kidneys will at some point fail or that they are at risk of failing without aggressive treatment. Patients simply don't absorb everything when they are still coping with bad news.

    The other elephant in the room is that there is no such thing as "unbiased" advice, particularly in areas that involve ethical dilemmas. I might think that I will provide you with a balanced discussion of the realities of dialyzing your 90 year-old father. But if I do - or don't - think he is a good candidate for RRT, how did I modify this spiel? I have certainly sat through ridiculously slanted discussions of RRT by other (usually Palliative Care) MDs with an "agenda".

    Additionally, we are now scolded routinely that we don't provide realistic prognostic information to patients. But should I really be emphasizing repeatedly that as a diabetic with end-stage kidney disease your prognosis is worse than that of metastatic colon cancer?

  67. You're probably not going to listen to anything I have to say, since I'm one of those palliative care clinicians you disparaged, but I thought I'd weigh in anyway. The answer is, yes, people want and need prognostic information and there are humane ways to deliver it. You start by ASKING if someone wants this information, acknowledging that they may feel ambivalent about hearing it, and, if they want to hear it, delivering survival estimates in ranges--weeks to months, months to years, years to decades. Give most likely, best case, and worst case estimates. Use language that people can understand easily--"in 5 years, out of 100 patients with your condition, about 20 of them would still be alive." To omit important information like this in patients who are contemplating starting HD is unethical. Maybe that 90yo diabetic with ESRD would make a different choice if they knew that their overall prognosis was poor--maybe they would opt for a time-limited trial of RRT to get them through to a family wedding or other gathering, then opt to stop HD and go on hospice. The question you should be asking your patient is: what is most important to you right now? And don't be satisfied with "I want to survive at all costs," dig deeper and find out WHY they feel that way. You'll be surprised by how realistic and achievable some patients' goals truly are.

  68. Ha. Caligirl, I'm very much acquainted with the literature on RRT in the elderly. I do give these patients a realistic assessment of their prognosis, based on the literature in Nephrology - my specialty, not yours. The word limitations here preclude a full disclosure of all I say, you'd have to attend my lecture on the subject. My own personal bias is that patient autonomy can get short shrift in this area, a concern that is increasingly shared in the literature. So ultimately, I explicitly leave it to the patient and/or family or healthcare proxy to decide what they want, having given them a realistic, literature-based appraisal.

    I follow patients with CKD for years, seeing them much more frequently than their primary care docs. On dialysis, I see them weekly. The scope of practice for dialysis is unique to Nephrology; are you a nephrologist?

    I should note that I've watched Palliative Care evolve since the term was coined at the Royal Vic in Montreal; I'm a fan. Sadly, the current generation of Palliative Care docs aren't entirely aware of the evolution of their role. But at my primary teaching hospital the Palliative Care service would not DREAM of contradicting the primary oncologist, with whom they have a mutually respectful relationship. They interact very well with me and our Division - very much not so at our affiliates. Indeed, your feedback illustrates how much your subspecialty has to learn about how to interact with nephrologists.

  69. "But should I really be emphasizing repeatedly that as a diabetic with end-stage kidney disease your prognosis is worse than that of metastatic colon cancer?" Yes. If it will help the patient understand the gravity of their situation.

  70. Even something as non-invasive as a blood transfusion needs to be presented in clear terms as to risk. I recently had to have one and had no idea of the risks involved until a stupid nurse walked in while I was having one and yammered on about how she would never agree to have one. My husband was furiously trying to get her attention and pointed to the bag being loaded into me and she instantly shut up. When I signed all of the intake papers, I was in a state of anxiety about my surgery and did not have the capacity to understand the risks. Since my surgeon had initially told me he almost never needs to do them, I didn't do the requisite research beforehand. Perhaps if he had been a little less shoulder-shrugging then, I would have done the homework.

  71. The nurse was as well informed as she was sensitive. The problem is that someone can disregard sensible equanimity and regard ill-informed squawking.

    (By ill-informed, I mean badly informed, not informed about illness, BTW.)

  72. Or he could have let you die from blood loss. It's not just the risks you get to focus on. It's the risks, and benefits. If you were healthy you would not have needed a transfusion. Obviously you came to the situation with a significant problem already, and yes, at that point, not everything gets to stay perfect and risk free. Sorry about that, but you need to recognize that as a patient. It's not about avoiding anything with a risk. It's about doing what needs to be done, to gain the best possible outcome, acknowledging nuanced awareness of risks as decisions are made. Thankfully your doctor was aware of those nuances, made the right call, and now you can be here typing away and blaming him for it.

  73. Blood products are very gross and I would avoid whenever possible. I worked in a major trauma hospital blood bank dispensing products, if you have a choice, most do not, avoid.

  74. Take your bullet points and apply them to MDs. As previously commented on, it is unrealistic to expect a scared or overwhelmed or low-health-literacy patient to follow your recommendations. As the professional, it is the physician's responsibility. You are right about informed consent. I teach Health Communication at a college and I refer to the typical informed consent procedure as institutionalized coercion. I am sure that you mean well, but patient-centered care requires that MDs step up too.

  75. The bit about MD's stepping up to is a different talk. In a different paper. Also, some medical procedures are planned months ahead where the patient has time for two second opinions. As for the coercion, that's why there is the accessory brain.

    I suggest that you step up to the plate and engage politicians, insurers, hospitals and doctors, and not just college kids.

  76. As a nurse & a person with a cancer diagnosis, let's stop throwing the responsibility burden back & forth.
    Yes, the informed consent form is a "legal instrument".
    Yes, universal healthcare would be nice but imperfect.
    Unless one is determined to have an altered LOC, one can probably make decisions.
    Let's work with our physicians as collaborators in dialogue & decision making, in the same way we work with our attorneys.
    And, like sex education, let's start very early in life to examine our thoughts & decide what we want for ourselves at the end of life (we're not ostriches).
    Let's all complete the healthcare proxy & advanced directives forms when we're well & stash them in our electronic medical record as well as primary care physician, oncology physician, family, & all appropriate people.

  77. While teaching medical students and residents for more than 20 years about how to counsel patients about surgeries, medications or any treatment options I would always include somewhere in our conversation my belief that there is really no such thing as "informed" consent. Even the most intelligent of our patients cannot realistically be expected to understand what we spend years trying to learn. While formulating a treatment plan with a patient I would try to explain as best I knew how, give reading material and visual aids as well, answer questions for the patient and family and friends. I would then have a preop visit to review what we were dong and why. I almost universally found that at some level it became a facsimile of the childs game "telephone" the message was always garbled to some extent. The best we can do is try to not speak "doctor", allow the patient to ask any questions they may have, and understand that in addition to the technical aspects the patient is trying to grasp quite frequently they are frightened which complicates the ability to truly understand. J. Heller m.d.

  78. I want real adult words and technical terms. And I have the background to understand it. Unless I make that very very clear, end up with 4th grade drivel I could have read years ago.

  79. Good article....very informative.

  80. When I went to the hospital emergency room I was given a simple consent form to sign. I wrote a short note on the form. I was told they would refuse to even see me unless I signed a clean form with NO markings.

    Says it all.

  81. The Consent form is generated by cooperation between, physicians, Departments and Health Information Management. As knowledge and understanding change, so does the form and should be reviewed, updated or completed altered, on a periodic basis, overtime. The Consent form needs to document risks, benefits, complications, etc. between the patient and the physician and the hospital. It is unclear why additional documentation would be negative or positive, did the patient have adequate review and explanation prior to surgery? My quick response is that if both the physician and the patient agree to the addition, it would be another element that was clarified between them. The addition could be initialed and dated at that time. Then the addition would become a legal part of the record.

  82. Says it all that the forms "are for the lawyers." It isn't about the care, it is about the release of liability. You must accept whatever they do, good and bad, and all costs/responsibilities are borne by the patient, including the errors. If you decline or even question this arrangement you are refused care.
    Hippocratic oath? Hypocrites.

  83. When I've had surgery, I quite often would cross out items or add items. I never had a form refused. Maybe it's what I crossed out or added that they had no issues with.

  84. Ask the doctor which option he/she would recommend if you were their parent/spouse/sibling, etc.

  85. that doesn't work. they recommend the standard protocol. ask what they recommend for you.

  86. As the only known surviving offspring of a female Atomic Veteran, I have 50 neurological diseases and, among cervical operations, had my vertebrae replaced with titanium. I had to study, using,, Ninety-eight percent of the neurologists I visited did not know what myoclonus was; I was given standard tests that failed because my system is inverted; I discovered the causative factor via studies: glioses, trapezoidal cord, signal loss. But doctors hate it when a patient knows more than they. But what to do when doctors no longer have to do some years of research before practicing and do not study nights? My ophthalmologist did not know about optical memory retained in the occipital cortex. His reply: we weren't taught that in medical school. It is a disgrace that Cubanos are better doctors. My wife, from Peru, has all of her medical work from teeth to surgery, done in Lima and returns with herbs from Quechua Indians that heal me where our expensive medicines do nothing. More, our system is now a patient every five minutes after a two-hour wait. Doctors read scans off low-res monitors; even the labs have foregone film and use G2 monitors (compared to the G26 monitors used in Hollywood); readers are dismal at their jobs ( studies). Doctors rely on them because the monitor shows them 1/256,000th the resolution of film. So one month I have 3mm nodules in both lungs, which is a huge size; six months later, no nodules.

  87. No doubt your mother was exposed to radiation in Area 51; the alien influences there may have been an additional etiological cofactor in your 50 neurological diseases.

  88. Let me add that many doctors seem under informed on broader scientific issues that are easily addressed by reading and very low level study. For example, they seem to be vastly under informed on the life cycle of ticks and when they are active although there is considerable and regularly updated information easily available. I have been told ticks are not active in winter when in fact they slow down only to speed up on a warm day. What diseases and what ticks seems to elude physicians. Although there is a state government map of southwestern ticks active in Massachusetts verified by field collection, I continually am told Lone Star Ticks and Rocky Spotted fever does not occur here. The dog down the street and his knowledgeable vet know otherwise. The dog didn't make it.

    Given that simpler information gap, I am nervous about diagnostic cures beyond my ability to research.

  89. I volunteer to help cancer patients like myself, and this is an excellent article. But I wish you hadn't used the phrase "alternative treatment options," which many will interpret as alternative medicine, such as juicing to cure their cancer.

  90. That's OK, we prefer "Complimentary Medicine" anyway.

    While it is common to pick on the extreme examples and make out that it's a ineffective "hippy-dippy" thing, CM at the very least can help mitigate many of the side affects of chemo and radiation to good advantage.

    As a truly informed patient, all options should be considered.

  91. why are people so afraid of alternative treatments? Is it because they no nothing about them and just generalize like "juicing to cure their cancer"? If conventional medicine was so effective no one would have to look elsewhere. Are you familiar with the ketogenic diet? It has a better scientific explanation of what causes most cancers than anything within conventional medicine. Problem is there is no money in a dietary change, and endless amounts in our present system. Oh yeah, it's "alternative" so just throw it out.

  92. Gerson therapy is a much better option than "chemo".

  93. As an RN I would also advise patients to ask their nurses for an additional explanation.

    We are taught in nursing school that a large part of our job is to "translate" the doctor's explanations.
    You should of course verify what you've understood with your doc.,but a lot of doctors are truly bad at speaking plain English and assume that patients understand some pretty obscure or even Latin terms.
    Nurses are a great resource for this.

    Please don't leave the doctor's office if you can't repeat back what they've told you in simple terms.

  94. I have two doctors I have confidence in, and one who has become very busy overtime and very matter of fact. To this RN's point, invariably when speaking with a doctor, or he or she departing information, usually shortened for the schedules doctors keep, more often than not, they use Medical lingo only they understand. I always will remember physicians practice medicine. Most I find practice what they absorbed in Med school.

  95. It's a sad state if nurses are taught to be translators for doctors. One thing that comes with age is the willingness to call out people, doctors among them, that think they are somehow above the rest of us mortals.

  96. I don't trust anyone in the medical business...not one of 'em. Your best bet is to do anything and everything you can to get or stay healthy and stay the hell away from the medical-industrial establishment.

  97. Excellent advice. It is such a shame. The only things that are marketed in this world are things that aren't good for you. Where are the ads for carrots and broccoli?

  98. Thank you. This is what I tell everyone and practice it myself. I also use the words medical business and industry to describe the very large money grubbing industries that prey on people's frailties and lack of knowledge. If anyone is uncertain of motives and consequences they should read the book Over-diagnosed by H. Gilbert Welch. That free prostate screening is a ploy to get you into the system for treatment you may not need.

  99. If I could have done everything I could to stay healthy, I would have chosen different parents and a different time to be born. Did my parents stop smoking after I was conceived? Probably not. Did their friends? No. Did my young adult friends? What about air pollution, which like tobacco can cause problems decades after exposure? Yes, do what you can. But in the end, you will get old, sick, and die if you do not die quickly. At this time, not much is known about stopping the aging process.

  100. The worst tho is the doctors who are offended when you start asking informed questions. Trying to take charge of your own health care and be informed can sometimes be an uphill battle!

  101. If it's even *possible* to offend your doctor, that's your first clue that you need to change your doctor.

    I ticked off a doctor about ten years ago who said I needed a colostomy. I yelled her right out of my hospital room.

    I still have never had a colostomy. She put a snide little comment in my medical records about my 'delightful personality', but, aside from that, she didn't do any damage to me, precisely because I didn't let her.

    The patient's guts are worth more than the physician's title.

  102. One more thought:
    Young, healthy people should be glad to pay into the ACA (Obamacare). They should understand that while they are healthy NOW, it will not always be so. By supporting and maintaining a system that provides health care for all Americans (even though they don't need it NOW, they are investing in the system that ultimately they will positively have to use. People in this group need to think ahead, and not just in the present moment.

  103. I totally agree. However, even young people may end up in the hospital, especially from accidents. If they do active sports, they definitely need the ACA. And then there's Hodgins, the young person's cancer.

    Plus, more standard ailments, such as bronchitis, strep throat, etc.

    You want to have a doctor before you get sick and you need to have medical insurance to pay for treatment.

  104. Even when I worked temp jobs through agencies (this was years ago when I was in my twenties/thirties) I always gravitated toward the jobs which offered health insurance. Always. Although I did not know about my genetic issues (and autoimmune as well) at that point, I knew without a doubt that health care would always be important to me. The first thing I looked at when it came to benefits on the job (besides the salary) was what the health plan would cover.

  105. Thanks for an insightful and helpful article. Patients also need to ask more questions regarding medical and dental devices and their materials, as there is no prescreening to determine tolerance vs. reactivity. Many people develop health problems from devices such as Essure, Mesh, implants, etc. Curiously, there is no informed written consent required for dental fillings. The majority of Americans have no idea that mercury is about 50% of dental amalgam, that it offgasses with heat and abrasion, and that people with certain gene types do not clear it well so it builds up over time, causing harm. See James S. Woods et al's four articles 2011-2014 in PubMed for retractions of the earlier findings of amalgam safety from the Children's Amalgam Trial.

  106. As I understand it, most people are so uptight by the time they are given an informed consent that they remember little of what they had heard. Suffice it to say if you eat enough ice cream you could die and any medical procedure of any consequence can have dire circumstances. My point, carefully choose your caregiver and appreciate, that, from my own point of view, it's all in God's hands. Prayer in fact has been the subject of scientific inquiry and has been proven effective.

  107. Here's what many of us hear when you start talking about percentages, odds, cures, etc. If you tell me there's a one in 10 chance it will kill me I'll here the killing part. If you tell me there's a 90% chance I'll be cured and then list the complications, I probably will focus on the 90% and ignore the complications. If you sit there in your coat, at your desk, and make faces when I ask questions, I'll probably shut up and go research it on the internet. If you ask me if I understand I'll say yes just to get away from you particularly if you have kept me waiting for awhile, if you rush through the explanations, or if you reassure me by saying that this is simple. It's my body and it ain't always simple.

    However, if you take the time to go over results with me, explain why the values are worrisome or excellent, explain why you want to do one sort of treatment over the other, I'll be all ears. If you tell me what complications or side effects I might expect, without being condescending or minimizing my concerns, I'll be more likely to trust you a bit. One of the best things you can do is to tell me when you are available for phone calls if I have questions, if I'm worried about a new symptom, etc. Another nice thing would be to write it down or print it out so I have something to refer to when I leave.

    Last of all, you may not worry about the finances of your proposed treatment but I will. So forgive me for asking financial questions. It's how our system works.

  108. There is a need to rank complications as they apply to the patient. Are they age related or specific to a gender, ethnicity, or genetic type? Listing risks allows you to recognize them after the fact but not be self-defensive. What about allergies to non active components of a drug? The minute there is a sulfate additive, I have a bad reaction.

  109. This article seems to assume that patients and research participants are lemmings to the sea. I work in HIV and the best informed, ready to learn individuals come in knowing more, having read more and expecting answers. And ICs are not a one time affair - it's a process. When on a study I had to answer questions each visit to confirm my understanding. It does seem like we see few articles talking about the change there has been or giving any credit to those constantly working to improve the care and research arenas. ?

  110. I'm a medical writer -- it is my full-time job to ask doctors questions about procedures that *I* do not understand, and to make sure I ask enough questions that I will get to the point where I can explain said procedures to other people in lay terminology. It's an inherently slow process, and the first drafts of my explanations frequently have small errors that the doctors have to go back and correct because I've missed some detail the first time around. But physicians working with me in my professional life are patient enough to go through this iterative process because they know that the things I write help them.

    When I'm the patient, it's quite different. I've had doctors become offended when I ask questions about my own medical care at a much lower level of detail than I would for something I'm writing at work. Truly understanding an unfamiliar branch of medicine requires asking quite a large number of "dumb" (from the doctors' perspective) questions, even if you are someone who, like me, has a good basic understanding of many biomedical concepts.

  111. I grew up with military health care and have repeatedly accompanied my mother to the local military hospital (Darnell, Fort Hood, Texas) for emergencies and doctor visits. I've also experienced the private sector for 30+ years in Seattle, Dallas, and Austin, at times with excellent insurance, so-so insurance, and none.

    The salaried military healthcare personnel, whose income is not dependent on the number of tests or the speed of the interaction, consistently offer great care, take the time to explain things, and seem perfectly able to recommend only the tests or procedures necessary to solve the problem. They also seem current on the latest research about specific issues.

    Meanwhile, in the private sector I receive poor care even when I had "cadillac" insurance through work. One example: being over-tested by people who didn't even listen to me. E.g., the neurologist who was checking a specific spot on my back that was always either painful or "buzzing." He asked if it was numb, I said no, and explained the weird sensations that had been there for months. He pricked it with a pin and asked if I felt the prick, which I did. His results, which I viewed two weeks later? "Patient complained of numbness, but testing showed site not numb." Seven years later a competent neurologist properly diagnosed me.

    I dream of a day I can see salaried, well paid doctors who are not driven to prefer quantity over quality.

  112. Best physicians I ever met were ex-military. Good to see them praised here.

  113. On the contrary -- neighbor Greg was USMA/Army and hated the waiting lines. Not everyone thinks military medicine is high quality.

  114. Even the smartest, most knowledgeable and informed patient can lose all of their abilities when faced with a critical, life-threatening decision. The National Patient Safety Foundation recommends "Ask Me 3" as a starter for general health care conversations:
    1. What is my main problem? 2. What do I need to do? 3. Why is it important for me to do this? Surprisingly, when we looked at this objectively, many primary care patients leave an office visit without being able to answer all of these questions.

    In cases where informed consent is required, I would modify these questions in the following ways:
    1. What is my problem? 2. What are you recommending and why? 3. What are you expecting if I do this and what might happen if I don't do this?
    4. What can I do instead?

    And, I agree with Dr. Sekeres: always bring someone with you who can ask additional questions and help you remember the conversation afterwards.

  115. If challenged in court, even a lawyer fresh out of school could challenge that the signature on the document is meaningless. The patient never had the opportunity to read the document and it was signed under duress. These informed consent forms are presented five minutes before a patient is taken in for surgery, there is a lot of commotion in the pre-op area, the sedated patient is rushed into signing the unread form while the staff threatens to cancel the long awaited procedure if the patient doesn't hurry up and sign.

    Since all chemotherapy will cause another cancer down the road one must wonder how oncologists are not committing malpractice every day and getting patients to sign for it. According to the drug-makers' ads on TV, every blood thinner can cause life -threatening bleeding and every drug for depression eases one along the path of suicide. The last line of Man of LaMancha says it all, "May the cure not be worse than the disease."

  116. Yeah, the last time I had to sign one of those my doctor told me exactly this. The document wouldn't stand up in court. I told him that I sincerely hoped that I would never have the urge to find out!

  117. Do Not be rushed into signing unread paperwork. If staff threatens to cancel, leave OR immediately. They will rush procedure!

  118. "Take notes, and bring someone else to your appointments to be your advocate, ask the questions you may be reluctant to, and be your “accessory brain,” to help process the information we are trying to convey."

    I've been taking notes for years when I visit my doctors. And, when I have had to have surgery, I found my notes to be invaluable. There is so much stress when you go though the process of having to have surgery and that's why notes are so helpful. Of course, it's great to bring someone along but if that's not an option, notes are the way to go. I write all my questions in advance and leave space for the doctor's answers.

  119. Why are there so many middle-men between a patient and his doctor in the USA, excluding insurance companies, such as all the lobbyists from drug companies to just politicos, vs Canada, Germany, Norway, Sweden, Finland, etc.?

  120. As a nurse, I often would call the physician after getting a consent form signed for him, when it was clear the patient did not understand. I sometimes had patients who did not know that a hysterectomy involved the loss of a uterus. Physicians were often angry at being "bothered" about such things, though as nurses, we were not allowed to explain the consent form, just get it signed.

  121. You were not allowed to fix the problem.

  122. One time, I asked a doctor what my other options, besides the course he’d advised, were, and he basically told me that I could find another doctor—not impolitely, but that was the gist of it. He would not advise anything other than what he had advised, which makes sense. I was able to afford going to another doctor, who recommended something else, which was effective.

  123. As a cancer patient who has been through many procedures, I can vouch for the fact that I really have never given "informed consent". I am not a medical professional and even with very patient doctors and surgeons who spend hours answering my many questions, I still end up having to "go with my gut" than really understanding the procedure. There is no way someone who is not medically trained can really be "informed" The major problem I've had after procedures is realizing the doctor did not fully explain the possible side effects and consequences, some of which can last a lifetime. If they accurately explained them, one might never have agreed to the procedure, so it is a double edged sword...the good thing is that I am still alive nearly seven years after diagnosis. You can read about my journey at

  124. Beth, there is no way anyone can be fully "informed". Doctors may well be less informed than you if you have the option to take time to read papers (I often start with and if need be learn the meaning of terms, biological, medical, statistical, etc. Not that everyone has that option. Even if you do have the time, and are willing to know the current state of medical knowledge, unless you are a clinician, you will not have clinical experience. Consultations are important, but if you can afford the luxury of research, please know that in the internet age you can get up to date and possibly know more than your doctor.

  125. After going through Chemo and radiation for breast cancer in her 40's, my mother has spent years having trouble with word recall. "Chemo brain" lasts for years after treatment.

  126. Lots of good post to this article. I would recommend for all interested, to read "Ending Medical Reversals" authors, two doctors, Vinayak Prasad, and Admam Cifu, with numerous physicians adding content. What one can learn is, reversing proven practices and devices, along with a lot of theory, (this should work), is reversed. Point being, at ones time of being a patient try and determine what the Medial profession is planning is confirmed by trial, not just studies.

  127. The only real solution for an educated patient is to actually do research and see what the studies say. My doctor recently cited a study to support her belief that I should take a certain medication. Because I had researched this medication on my own, I knew that there were actually two relevant studies and that the other one had different results. She was, in fact, aware of the second study, but had chosen not to mention it. The age of medical paternalism, in which doctors just told patients what to do, is supposed to be over, but there are other, more subtle, ways in which it still exists. Unfortunately, not all patients are capable of understanding medical studies, but those who do need to take matters into their own hands instead of relying on doctors to tell them everything they need to know. Yes, doctors should improve in seeing that a patient's consent truly is informed, but those of us who are already dealing with serious illnesses simply cannot wait for that to happen.

  128. Sadly, the age of unquestioning patient acquiescense to doctors is alive and well in the UK. Medical education does not seem to include many lessons in patient education. Most patients dont expect much information and have been taught they are too stupid to understand "all that medical talk" so have no reaction when they dont receive it. The information flow is therefore stunted in both directions. A recent study reported in the BBC and the Lancet found over 21,000 heart attack deaths from 2006 to 2010, in patients who had been admitted to hospital within the month of their death with heart attack symptoms including chest pain which were either not recorded or not pursued. These statistics may help speed the slow process of change here to greater patient involvement in their medical care.

  129. And don't forget that all studies have a risk of bias, and that negative studies aren't published, and that studies are funded by industry, and that academic physicians craft studies to support their existing views, and that there is career pressure on academic physicians to publish whether their result is good or not, and sooner or later you realize that studies are also not the rigid answers that you imagine them to be.

    And then you will appropriately revert back to finding a doctor who has experience, that effectively communicates his thinking and personal experience with a planned procedure, and that is when you will be making a good decision.

    Lay people should generally not try to rely on studies. Even trained physicians have tremendous difficulty evaluating the merits of one study versus another.

  130. You are too dismissive and ignorant to be my MD

  131. Very important information. Best to be a patient that is informed than someone the doctor thinks is "nice." I also just read a book that explains the situation from the doctor's perspective that I found VERY helpful.... here is a review

  132. Another (RN) recommendation for this beautiful new book -
    Attending - Medicine, Mindfulness and Humanity by
    Ronald Epstein, MD
    Relevant to the many concerns in the comments here.

  133. My elderly dad years ago collapsed from what turned out to be a kidney infection. While in the hospital, an x-ray discovered what appeared to be a lung tumor. They planned a biopsy although my dad did not want to treat cancer at his age (85). I questioned the night before why he wanted one in that case and he said he'd like to know.
    However, when he read of the potential side effects including lung collapse he decided against the biopsy and declined to sign the consent form. The doctor was furious and said "well I'm still going to get paid for this" to which my father said "no you're not!"
    Honestly, I don't think most doctors are like this, but that one was, and his spontaneous reaction was revealing.
    I think consent forms (when possible) need to be signed in ADVANCE and not at the time of the procedure.

  134. Sounds like you missed the conversation earlier where your dad decided to have the biopsy. Then you talked to him, and he changed his mind at some point, but you didn't tell the surgeon until right before your dad's case was supposed to start. Of course he is irritated; you are totally inconsiderate to cancel at the last minute, when you knew ahead of time that he had changed his mind. You wouldn't do that to your babysitter or plumber, I bet.

  135. YES INDEED! At least 2-3 days prior. Read in a timely manner. All Questions answered PLUS time to do your own additional research. Consent forms not always correct!

  136. Great article. I was on an NIH review panel once where a researcher was proposing in a grant application to create a video explaining the benefits of electroconvulsive therapy as a treatment for severe depression. As a former documentary filmmaker, I could assess that the applicant would probably make compelling video that would demonstrate the benefits. But that was the problem. Their skill in selling the benefits could create the impression that ECT was the only reasonable approach. Thankfully, our panel pushed back (at my encouragement) that the video include a vignette of someone who did NOT get ECT and yet still recovered from their depression. Making sure to give equal treatment to alternatives is an approach that isn't followed often enough. Please keep writing about this important issue.

  137. "How much will this procedure cost?"
    "Which of these procedures is less expensive?"

    Ask these two questions, just for giggles.

    Maybe if every single patient now and forever asked the price, doctors would get so sick of it that prices would become public information instead of the stealthiest secret since the atomic bomb.

  138. You are correct. As an RN, I can tell you that patients do ask me how much procedures cost and my answer is "I have no idea". The doctor won't know either. Neither will other nurses or even anyone in the billing department. In fact, no one will know because there is no real price for anything. If you have private insurance it's a different price than if you have Medicare or Medicaid. If you are paying out of pocket, it's a different price and it's often negotiable. The doctor has one price, which he doesn't know, the hospital has another, the lab and pathology another, the radiologist another, anesthesia another and no one know the price of anything.

  139. No one really knows the price, because no one really knows the cost of the components of medical services, devices, medications, tests, etc.

    Cost-accounting in medical care is very rudimentary because of the large number of factors involved: labour time of a very wide variety of skilled labour, training, various supplies which are packaged, stored, delivered, dispensed in many different ways, capital costs of the facilities, maintenance of the facilities, heating, electricity, AC, cleaning, food, etc. And I'm talking about costs incurred inside the hospital after goods and service from outside vendors have been paid for.

    Ford knows to the penny how much it costs to produce a specific model because they have measured the cost of every single thing that goes into that car. That has not been done for medical care. So costs like labour, capital, rent, utilities, etc. are rolled-up and then allocated to things like bandages, IVs, OR time, etc. Nobody knows the actual cost of your specific hospital day or knee replacement, it's all an estimate.

    Nobody knows the actual costs, that's why the prices are all negotiated to keep revenue within budget.

  140. Doctors don't set the prices except for cosmetic procedures.

    Insurance companies (including Medicare, Medicaid, private insurers) set the amount that they pay a physicians practice for each of 10,000 codes called CPT codes, which encompass all the things that can be done medically, ranging from an office visit of a certain complexity to a certain surgery.

    Insurance companies also determine what portion of that amount is paid by them, and what part is paid by the patient; that amount is determined by the patient's insurance policy details.

    So the way to know what something costs is to ask your doctor what CPT code they will be doing for your operation, ask their billing department what their "allowed amount"/"contracted amount" is for your particular insurance brand for that code, and then call your insurance company to find out how much of that "allowed amount" you have to pay.

    Then repeat for the hospital or surgery center.

    Then repeat for the anesthesiologist.

    Then repeat for the pathologist who analyzes your tissue specimen removed in the procedure, if applicable.

    You see why your doctor can't just tell you a number?

  141. Thank you for writing on Informed Consent -- a right that lies at the foundation of medical ethics, and is a cornerstone of respect for a patient's autonomy and humanity.

    Just one correction: Medical errors that harm patients do happen frequently. It's estimated that over 250,000 people in the US are killed every year due to medical errors, and countless more are harmed.

  142. I will never forget the time I was already on the table in the O.R. for a procedure when one of the staff realize that I hadn't signed the "informed consent" form. Although my glasses had already been taken away, and I received no explanations, I was required to sign the form before the staff would proceed !!!

  143. Informed consent is the process of the decision making, the discussion, the contemplation of the potential risks and potential benefits of a suggested treatment and its alternatives, always including the option of non-treatment and allowing the disease to run its course untreated. Signing the form is the record and acknowledgement of that process; that paper is not the informed consent itself. It is irrelevant when you sign it, as long as the informed consent has occurred prior to your signing.

  144. Leave Before Sedation. Not a good idea to go forward with an O.R. staff in a hurry!

  145. * Ask your doctor "If your mother/father/wife/husband had this condition what would you recommend that they do?

  146. A lot of people seem to think this is a good idea but I'm not so sure about that. I get asked that question many times and I give my honest answer but I also preface it with the statement that treatment decisions are often based on the patients' preference, values, etc. and that my family's values may be very different from their own.

    For example, my parents are very confident about what they want for end-of-life care --e.g. if they can't cogently think/ communicate, they don't want to be kept alive. And I'm comfortable with their decision. But for other people, they want much more done even if they reach that state. And if they don't, often their relatives want more done.

  147. What's the purpose of this? Why would a doctor give you a recommendation different from the one for a relative? Are you assuming that your doctor is trying to harm you??

  148. Sometimes I say, "Is this the way you would advise your mother or sister or any close relative?"

    In another situation, I asked a doctor after she gave me a diagnosis, "What is Rheumatoid arthritis?" She said, "Go home and Google it." I fired her. Pretty sure Glenn Frye's doctor didn't say that to him. But Glenn is dead and I'm pretty sure he had informed consent. So the question is: did he understand that he could die from the RA drugs?

  149. Good for you. Any doctor who tells a patient to Google something isn't a good doctor and certainly not worthy of the MD.

  150. Perhaps your doc was crediting you with having curiosity, autonomy, literacy, comprehension, and maturity which this moment you are forgetting, so as to vilify her approach (a very sensible approach, in the case of RA, which I too suffer from)...

    Most docs these days are employed and have contracts that punish them for taking too long with patients. PCP's and rheumatologist in my town, many of whom completed training with $250k of debt and then naively bought a house on the real estate bubble (now "underwater") were handed new contracts when the hospital bought their clinic and were sneeringly told that they might as well not read it, because they wouldn't be getting any other options.

    In our state, PCP incomes have been stagnant or declining for the last 18 years. PCPs who are independent and choose to take more time with patients make less yearly than most nurses or schoolteachers, but work longer hours, take calls in the middle of the night, and rarely take vacations. Oh, and no pension or retirement plan.

    No wonder there's a shortage of primary care providers. People pay their dentists and mechanics far more.

  151. I ask the same question - what would you recommend to your sister? Or your mother? Sometimes they go for it, other times not. I try to humanize myself to them. It's a shame we have to do this.

  152. This may all be a moot point if there is a health care overhaul. There might be a basic standard treatment for a particular disease for everyone and if it doesn't work, any other treatment will probably come out of your health savings account(of which there won't be enough cash) or your own pocket. Only the rich will be able to afford the next line treatment, gene therapy or clinical trials. Ditto for any medications reserved for people not responding to the generally accepted pharmaceutical and whose price is exorbitant.

  153. It is true that national healthcare systems have restrictions on what types of treatments are covered for certain conditions BUT so do private health insurance companies. Even "cadillac" health insurance plans have restrictions.

    However, the difference is national healthcare systems make decisions based on effectiveness/ societal benefit, etc. rather than profit like many health insurance companies do. And, having multiple relatives in Asia, Canada, and Europe covered by their respective systems, my observation, as an MD, has been their restrictions are no worse and in some cases less restrictive than ours when it comes to treatment. For example, in some countries, there is no "in-network" and "out of network" docs; you can see almost anyone you want.

    For clinical trials, you usually do not have to have money to participate, other than say, paying for a ride to the clinic and in some studies, even that is covered. Most trial costs (treatment, MD visits, etc.) are covered by the government, private company, foundation, etc. sponsoring the trial. So I don't know what you're talking about and where you get the idea one needs to be rich to participate in research.

    If you mean the freedom to try ANY treatment you choose, including those that are experimental, OUTSIDE of a trial, then yes, having unlimited funds would be good.

  154. More Than 80 Percent of Patient Groups Accept Drug Industry Funds, Study Shows
    NYTimes By Katie Thomas March 1, 2017

    "Dr. Emanuel, who advised President Obama on health care, said medical researchers are now pushed to disclose ties to the drug and device industries when they write articles and make public appearances."

    Yes, but does that hold true when they are also prescribing to their patients?

    "Physicians who engage in ROMP (research on medical practices) face a professional and ethical challenge, however. This research takes place in the context of ordinary clinical care, blurring the boundary between research and practice. A physician’s primary obligation is to act as a fiduciary toward her patients, whereas a researcher’s duty is to benefit society at large by producing generalizable knowledge. Having physicians serve both roles simultaneously is considered by some to be cause for concern due to potential conflicts of interest [3]."
    AMA Journal of Ethics®
    Research on Medical Practices and the Patient-Physician Relationship

  155. First, thank you @nytimeswell for publishing this + @MikkaelSekeres and Dr Gilligan for writing it. Love to see mainstream coverage of IC and this piece covers many of the key elements we found in our @Sagebio research on informed consent for research studies. A few things I would add to the mix. One, patients are very much at the bad end of asymmetric power when it comes to IC. Especially for research. The form is the form, and it May Not Be Altered without an IRB amendment. It’d be good to make sure that participants realize their core choice in research IC is “in or out” - not a negotiation. Also, there is a serious participant bias present - we like to say yes to our doctors. Simply emphasizing that “no” is okay is important.

    Also, would add that “signing the IC form” shouldn’t be the end of the relationship - but it too often is. Good IC design doesn’t stop with documents. If, for example, one is in a study, and gets ongoing communications about it, one can make better choices about when/if to withdraw.

    You can find more at and a peer reviewed paper on our work at - thanks again for publishing this piece.

  156. Yes, telling pt its ok to say no and/or 2nd opn is good advice. I will start doing that more. Its fast.

  157. When my mother was in the hospital and dying, my sister and I were trying to figure out what treatments for her multiple conditions were necessary for comfort. It took several long conversations with doctors, nurses, social workers, not to mention time with Google, for us to understand what the choices were and the meaning of each one. We were healthy, educated, and familiar with her medical issues. Further, we didn't have to balance the risk of a procedure against the risk of a loss of some quality of life.

    If doctors really want us to understand, they need to spend a lot more time educating their patients than I think they will get compensated for.

    However, a series of videos might help.

  158. While undergoing chemo for breast cancer, I agreed to meet with an RN who was doing research on the benefits of exercise during treatment. Since I was having my treatment at a teaching hospital, I hoped that my experience might benefit others. Try as I might, I was only able to do the minimum amount of exercise recommended. ( I found that swimming was some help.) During my 8 weeks of treatment, I was subjected, albeit gently, to a mild form of shame that I just was not trying hard enough. Only at the end of the study did my nurse share with me that she had not been able to keep up the recommended levels of physical activity during her own chemo, that in fact she had been as thoroughly wiped out as I was. I found it unfortunate both for myself, and for the integrity of the study she was conducting, that she had not been honest from the beginning. No doubt, both of us skewed the data. And to what end? To make other women feel ashamed?

  159. Informed consent means that the MD tells you that to which s/he wants you to consent. It has nothing to do with informing you, the patient, as to what your treatment options are, or the likely cascade of events the might follow for each option that could be offered but are not preferred, offered by, or, in some cases, even known to the physician.

  160. False: Informed consent must also include known and possible "other" risks you are agreeing to undertake, and that if you decide not to participate in the procedure there will be no retribution. There are boilerplate informed consent forms you can read online. These are monitored by an Institutional Review Board (IRB) at the institution/clinic/hospital. Boilerplates are the starting point. They provide basic required information needed to give "informed" consent. A researcher, and presumably an MD, can tweak the consent form, adding relevant information beyond what is covered on the IRB form. They can also write it in everyday words.

  161. I believe the guidelines are to write informed consent documents at the 4th grade level. Maybe that's too high??

  162. The "informed" part of "informed consent" is critical. It requires having the information one needs to make an *informed* decision, i.e., evidence-based data-driven information on the different options (including the option of doing nothing) and their respective risks, benefits, and probable outcomes.

    Fortunately, we'll soon have robots to give consumers the information they need, at a much lower cost. Ironically, in this situation, it will be the robots who display respect for humanity, giving people what they need to exercise their capacity for autonomous choice.

  163. The most important thing I learned from having cancer is to get a second or third opinion. The first oncologist I met with told me that if I saw 10 oncologists they would all have the same recommendation. I saw two more and neither had the same recommendation as she did.

    For any major medical procedure I recommend getting a second opinion.

  164. So you get differing opinions - then what?

  165. It appears that this is one more thing that can cause injury to a patient: A high level of self deception practiced by the MD.

  166. Not only a second opinion but perhaps a 3rd, 4th or 5th. With each subsequent opinion, one gains more info about what is necessary or various options. Yes, you could end up even more confused, but more than likely, you will be able to make a better decision. Take extensive notes for each opinion so you can come to the decsiion that is best for you.

  167. So do I have this right...: The least medically trained "partner" who is most at risk is being given the job of muddling through crucial medical/legal/survival-related information so they can judge whether to proceed? So the MDs and medical system that CREATED this opacity problem are shifting the BURDEN to the least trained "partner" to figure it out pretty much on their own after time is up in the clinic visit? Really. Is this the best that the person with the most knowledge and experience, the medical provider, can do? Wow. Forewarned is just the tip of the iceberg here. It doesn't solve the underlying problem.

  168. It is the same at the airlines. The least senior flight crew member does the pre flight aircraft inspection. Apparently seniority buys you the right to be lazy.

  169. It can't be solved unless the patient gets a preoperative medical degree. Unlucky.

  170. Yes, you have that right.

    And, what's worse, the 'duckling' of an intern/resident whose job it is to follow the 'mama duck' of an attending physician around...has very little interest in actually *doing* their job with you, as it is their goal in life to become a 'mama duck' themselves.

    So, they view doing informed consent as basically scut work that they will graduate from one day, when they get their 'big doctor' pants on.

    It's fantastic. Truly.

  171. Doctors need to check their arrogance and impatience at the door. They don't have all the answers; probably not even close. Wish my spinal surgeon had taken the time to explain neuropathy to me, a painful condition most of us have to deal with after a fusion. He wouldn't even discuss it with me after surgery. So afraid of a lawsuit. Don't worry, doc, you can keep your fortune to yourself. Having been married to an orthopedist I can tell you they lose sleep over lawsuits, not their patients. Most people treat them like authority figures; big mistake.

  172. I was pleased to discover I've already been following most of the guidelines described. One doctor got impatient & huffy multiple times when I repeated back instructions to make sure I'd understood properly ("I already *told* you!…"). I decided to continue my treatment with another doctor.

  173. ' over twice by the same profession? Unlucky.

    P.S. Fusions never work for axial pain.

  174. Hey, Dr.:

    Why don't you give your patients:

    The common words or terms for the terms you are using

    A summary of what you explained to them

    Written materials, pictures and videos of the relevant information

    Best-case, worst-case and most-likely scenarios

    A list of others who have undergone similar surgeries who have volunteered to talk to your patients about the surgery

    A list of common, alternative treatment options

    In other words, why aren't docs already doing this for their patients? Why are you asking patients, many of whom are incapable of taking the steps you described, to do this work for you?

  175. Yes! It's vital to use words patients understand. I'll never forget accompanying my Dad to see the physician who'd removed a tumor from his neck, and listening to the doc tell my Dad--who'd had to leave school in 3rd grade--"Your tumor was benignant."

    Dad went pale. To him, a medical word that ended in "nant" sounded like "malignant." How was he supposed to know the meaning of the Latin root "bene?" So glad I was there to translate! (Oh, how I glared at that doctor.)

  176. I agree! The onus should be on the health care providers, with simple recourse to the patient if the providers don't meet these responsibilities....I underwent a five minute, in-office procedure that the doc called a "release"-- only to find out this meant the surgeon had cut my tendon, using needles through my skin. I only found out his meaning for "release" afterwards, by looking online. (I never even signed one of those scribbled-in consents the docs use.) The medical outcome of this procedure was horrible, and the cost in trying to un-do it or compensate -- hundreds of thousands of dollars.

    Another point: if you request your medical records, the notes the providers have dictated -- outside of your presence -- they have sometimes written in things they did not actually say to you, or they mis-state your history, add in the doc's after-thoughts or things to protect themselves -- it's troubling how inaccurate these clandestine notes can turn out to be.

    Few doctor offices make it easy for me to get their notes sent to me -- and never just as a matter of course. Instead, the support staff send me into a records system that can take weeks and sometimes multiple computer entries, telephone pleadings, etc. Why isn't the default option that the patient gets their records and can amend them?

    The docs who wrote the "Informed Consent" article seem well-intentioned. But I hope they -- and others with some power in this system -- will dig much deeper into the problems here.

  177. I am a cardiologist and totally agree with you.

  178. As a surgeon, I have suggested to my patients that we discuss a course of treatment more than once, allowing the patient to think about it, to seek a second opinion if desired, and to discuss it with family members, all presupposing that the planned pfocedure is to be performed electively. In an emergency, one can only hope that the patient came away with at least some understanding.

  179. Yes, but did you set out all the details of your proposed treatment in writing? With all due respect, I'm willing to bet you didn't.

  180. Example: I had a total knee replacement and was given Ketamine, yes Special K as it was known by druggies on the street. I awakened thinking I was a prisoner in a WWII prisoner of war camp and terrified. I was psychotic for three weeks with a few semi lucid times. I thought I had gone crazy. I am a registered nurse and worked in ICU and CCU for many years. I couldn't understand what was happening and tried desperately to be good so they wouldn't torture me. I heard other prisoners crying for help and I asked the nurses to help them to no avail. Only my family caught on rather quickly that something was terribly wrong when I tried to read a menu upside down and wanted a toasted cheese pizza! During my hospitalization I was given OxyContin for pain which is also a hallucinogenic drug and this perpetrated my psychosis. Finally I stopped taking drugs that cause hallucinations for pain; the lucid me knew not to take them.
    The point of this: if I had known they planned to use a hallucinogenic drug, that really was unnecessary for my surgery, I would have said NO. I am terrified of any future surgery, but if it is absolutely necessary I will have a say in what drugs are given for anesthesia. And my family is prepared to speak up right away and be my advocate. As a nurse, I am appalled that the nursing staff didn't recognize my psychosis, as an ICU nurse I have seen it in my patients and we protected them and helped them to regain reality.

  181. Same here for this RN: in my case medically unnecessary Reglan IV postop for nausea I never experienced. But I thought I was dying with my heart rate and BP through the roof, major anxiety and restless agitation. I finally realized it felt like something foreign and I screamed"what have I been given?!?!" And they told me. I insisted on being given Ativan and that my records ever since report "allergy" (because "intolerance" doesn't exist as a thing on forms) to Reglan.

  182. You can see that hallucinations were not on the list, because they are too rare. You would have been consented for a huge list of problems and they still might not have got to the relevant one. Which is a whole 'nother talk about consent...

    In fact it is not possible to have a patient give fully informed consent, because there is too much information. Giving them too much information would be oppressive. They might waive their right to informed consent without knowing what they don't know. To ubderstand properly, a patient would need to study biostatistics and review the literature and know the local medical culture and the actual intricacies of the treating team. The patient can't. Unlucky.

    If a patient has an issue with a particular side effect ahead of time, they need to ask about it.

  183. Ketamine side effects from the product info (PI):

    Cardiovascular. Blood pressure and pulse rate are frequently elevated following administration of Ketalar. However, hypotension and bradycardia have been observed. Arrhythmia has also occurred.

    Respiration. Although respiration is frequently stimulated, severe depression of respiration or apnoea may occur following rapid intravenous administration of high doses of Ketalar. Laryngospasm and other forms of airway obstruction have occurred during Ketalar anaesthesia.

    Eye. Diplopia and nystagmus have been noted following Ketalar administration. Ketalar may also cause a slight elevation in intraocular pressure measurement.

    Psychological. See Precautions, Emergence reaction.

    Neurological. In some patients, enhanced skeletal muscle tone may be manifested by tonic and clonic movements, sometimes resembling seizures (see Dosage and Administration).

    Gastrointestinal. Anorexia, nausea and vomiting have been observed. However, this is not usually severe and allows the great majority of patients to take liquids by mouth shortly after regaining consciousness (see Dosage and Administration). Hypersalivation has also been observed.

    Abuse potential. See Precautions.

    Immune system disorders. Anaphylaxis has been observed.

    General. Local pain and exanthema at the injection site have infrequently been reported. Transient erythema and/or morbilliform rash have also been reported.

  184. This is why many hospitals offer patient advocates. They're individuals whose sole responsibility is to ensure that you have the information you need (as well as the attention and care you need) in case doctors and nurses are too busy to notice (or care) that you're confused or uncomfortable.

    Sometimes a friend or relative can help be an advocate for a patient, but it's so much better when the hospital provides their own patient advocates who know the in's and out's (and names and faces) to work real magic!

  185. I've never seen a patient advocate, in the hospital myself or with someone else. Where are these advocates found?

  186. A good doctor is the patient advocate. The hospital is frequently not.

  187. Hospitals MAY offer patient advocates. Usually NOT Independent, Employed by hospital. Misrepresentation NOT made clear, except under extreme questioning. They claim PA Dept does NOT use email, only snail mail, to 1 "facilitator" who is Only point of reference. Facilitators do NOT share results OR contacts. They want to over ride your encrypted system by allowing them Oversight to your entire system "to protect confidentiality" == usually PA and Hospital. They advise entire paper trail will be deleted without patient allowed copy! No Hospital culpability is found.

  188. And what do you do if the doctor won't do what you're asking? It's not like going to your neighborhood pizzaria, where you get to say "If you can't make me a pineapple asparagus pizza with no tomato, I'll take my business across the street."

  189. You are right. You aren't placing an order. You are asking the advice of an expert. If you don't trust your doctor, move along, but don't think you can just tell them what to do.

  190. Actually, you can change doctors. I cannot count how many doctors I've fired. On the other hand, I've had the same internist for over 20 years. It's your body, you're in charge.

  191. You find a different doctor, one who WILL explain in English rather than medicalese. Or perhaps you choose a different form of treatment - one which will not be as harmful and which may be actually helpful - nutritional therapy and IPT instead of standard chemotherapy, for instance, But first, it is required that the patient be willing to ask questions. Sometimes, people are so frightened that they simply freeze. And in that case, it is up to us, their physicians, to give them the best possible information, as we best understand that information, and trust in the overall beneficence of the Universe to carry us along. There is no once size fits all answer. If I hate pepperoni and absolutely require pineapple-asparagus, then it is my responsibility to find a pizzeria that can deliver. The issue in medicine is not any different. There are always choices. Whether we choose to explore them is up to us.

  192. I am an OB/Gyn and I really strive to make sure my patients are informed. If you watch carefully for the patients reaction, it is often clear that understanding is not there. If I have other patients waiting I provide written information ( all patients get written materials in my clinic) and advise the patient that we should talk again at another appointment and invite the patient to bring a friend or family member. I wish there was more time to discuss.
    I work in a public clinic so resources are limited and there are a lot of patients. I am paid by a base salary with no bonus or additional income for my work. I work in that setting rather than one that would provide a higher salary because helping my patients is my passion and the satisfaction I feel about what I'm doing is more than money can buy.

    I'm going to print the article and put it in my exam rooms, or at least something of the sort. I WANT my patients to understand what is happening. It is imperative to me that my patients receive care equal to that of any privately insured or wealthy patient. I work very hard to maintain up to date knowledge and surgical skills. It saddens me to see so many negative perceptions of us docs. Some people are not wrong in their negative opinion and that saddens me even more.

  193. In my experience, engaging physicians poses multiple challenges, even for those trained to question authority. Better physicans are open to dialog with note-taking, question asking patients. But even they wait for patients to initiate.

    Physicians willingness to talk also varies inversely with the intensity specialty. I find internists and dermatologists pretty open, but surgeons particularly terse. Still, the better ones are frank and to the point about their experience and success with specific procedures. Anyone unwilling to state their batting average probably doesn't have anything to brag about.

    More than profit, I suspect that medicine's inability to purge itself of second rate practitioners undermines doctor-patient exchanges. Too often, doctors' recite caveats with equivocating language as coached by malpractice attorneys.

    To have more honest and equal exchange between doctors and patients, doctors must be more honest about driving out their underperforming colleagues. Decrease actual malpractice and insurance rates should fall.

    Meanwhile, those among us with technical proficiency or social self-confidence can help the high-handed to come back to earth, but we can't be everywhere.

  194. I'm a reconstructive surgeon. I've always thought of the decision to have surgery as a joint decision between equal partners, and the consent process as a sort of "so what are YOU looking for in a relationship?" conversation.
    These discussions take time. I book 40 minutes for a new patient appointment, usually a 20 minute follow up visit to discuss options, then a 30-40 minute visit for the formal consent process. I've tried many different tools to enhance understanding - three dimensional anatomy models, paper handouts, computer animations, personalized illustrations of before and after. I've even tried a quiz, as mentioned in the article.
    My patients' responses to the quiz (single page, 5 questions) were highly variable. Most women were happy to participate, since it was clear that I wanted to make sure they understood their surgery. Some astonished me with their level of understanding..."you'll make an incision here! Then you clamp the ligament here! Then you divide the artery here! What do you do with the tube-y thing at the top?"
    There seems to be a small percentage of patients who are of the Jesus-take-the-wheel mode of thinking...they would look at the quiz, become visibly uncomfortable, and hand it back saying something along the lines of, "you're my doctor and I trust you."
    I think every patient desires a slightly different amount of information. What may overwhelm one person may just be scratching the surface for another.

  195. Second and third opinions matter, if the situation permits.

  196. Let's get some perspective here:
    "When is the last time you read a 25-page document from beginning to end?"
    Umm — when your life depended on it?

  197. my father was a GP/surgeon and I studied first year Medicine so I can understand most medical terminology

    I also understand that bedside manner was not taught for many years in med school and only recently is seen as an important adjunct to medical training

    But for most non-intellectual patients who understand little of medical terms, they will have put their trust in the doctor having first asked their friends and colleagues for recommendations for the 'best' doctor for their condition

    Having done so - they're probably committing their lives in trust to you as a doctor - kinda like we assume trust in the pilot of the plane we just got on - we don't want to know their life story, we just want them to do the job and get us to our destination with as little fuss as possible - 'nod' - 'yes' - 'thank you doctor'

    of course in the litigious US of A where fields of contingency lawyers hover around the possibility of malpractice suits, doctors may need to take care about the advice they give

    but in Oz it's more likely - I asked around first - then trusted he could do it.

  198. I was in a coma and even when I woke up I couldn't understand what happened to me and why I was in such bad shape. Lucky for me I had my wife , daughter and my friend who was an investigative journalist as my proxies . They were relentless with questioning my doctors about my treatment.even when the doctors were fighting between themselves About when to do certain "life" saving procedures. I am here today because of the doctors but also cause they questioned them and had them explain everything in detail. Yes we need the doctors to explain everything in terms we can understand but we also need someone there to keep the doctors on their toes. Every patient needs an advocate that has their back not the doctors or the hospitals. The hospital social worker works for the hospital .... and the patients health is not her first priority ....

  199. One of my friends in college, a very smart young woman, told me the following story. When she went to the contraception clinic in college to get birth control pills the first time, the nurse painstakingly explained how to take them. The process took forever. My friend, being both smart and with a sense of humor, was then asked if she understood the proper way to take the pills. She said 'sure! To make sure I don't forget to take any of them, I will take them all on the first day.' The nurse practically fell out of her chair. And it took quite a while before she would believe that my friend really understood how to take the pills properly.

    I guess what I'm trying to say is that not only should medical practitioners explain more, they should know their audience, if possible, and tailor the level of explanation to their patient.

  200. I think it is our job as physicians to transparently recommend a course of treatment and explain all of the risks and benefits in clear language. I try to relate statistics and risks to something patients are familiar with (as in, "the radiation dose from this x-ray is the same dose you'd get from taking a flight from DC to NY," or "if everyone in an average full movie theater had this procedure, only 1 would have bleeding afterwards"). We can't just report mortality risks and and side effects with no context and expect patients to to be informed.

  201. The first item every patient should ask their physician is, " Do you have any financial interests in any testing/or procedures that you plan for me"?

  202. Come to the appointment focused on your care and plan.
    Don't waste time trying to socialize or "get to know" the doctor: where his kids go to school or where she goes to church or vacation are irrelevances that take time away from the important issues at hand.
    Write questions down in advance, because there is a good chance you will forget to ask something.
    By all means, make sure the doctor speaks in lay language, and not medical jargon. Having a companion to help remember, ask questions and advocate is always an excellent idea.

  203. A physiciam once telephoned me during dinner to spologise for not listening to me. He said he suddenly remembered something Id said in the seemingly irrelevant chitchat before we'd gotten down to business. The rest of his accurate diagnostic process was based on that seemingly unimportant conversation. Nothing we say to a GOOD doctor is ever irrelevant.

  204. here's what i do: before i sign the papers, i ask my doctor is she believes i need the procedure. if she says yes, i ask her if she will do the procedure(s), if i don't sign the papers. she will say no. therefore i sign the paperwork without reading the conditions therein. simple. i'm almost 79, and it's always worked out. the most important thing is to choose a well-trained and ethical doc.

  205. I sat on an Institutional Review Board for over a decade at our local VA hospital. While some significant number of Informed Consent documents came to us poorly worded in content and language, none left that way. No patient received a document explaining the medical experiment to which they were joining unless it was clear, understandable and complete.

    The author of this article works at a first rate institution which, if this article is accurate, is not keeping up the standards that we are supposed to follow in achieving informed consent. I am sorry that the process with which this doctor is engaged is outside the rules and commitments of Institutional Review.

  206. I would like to think I could listen and ask all these questions of my oncologist, but I'm lucky if he is in the room for as much as 5 minutes. I know he's busy, but I feel like I'm on an assembly line. I have gotten much better explanations from the radiologist and especially the physical therapist.

  207. The problem is doctors. Full stop.

    I saw this first hand when my father was treated at one of New York's premier surgical hospitals, by a leading physician. My father was a sophisticated consumer of medical services, yet in the months leading up to his surgery, my parents would relate what the surgeon said, and invariably certain facts would change. Naturally, I assumed my elderly parents were mishearing the surgeon, so I began to attend my father's appointments. What I found was that the surgeon would provide me mutually exclusive answers the same questions.

    Equally worrisome, was the fact that after the surgery, my father experienced a complication that all the nurses stated was commonplace, yet the surgeon had never mentioned. Moreover, the physicians disputed that the complication was common as the nurses who treated the patients on a daily basis indicated. Who to believe?

    When my father required additional surgery, he needed to be taken off of blood-thinning medication. This was a great concern, given the risk of blood clots and stroke. Only after the procedure, due to which he suffered a stroke, did we learn there was a medication that he could have been given which would have mitigated the risk of clots. While there are countervailing risks with the drug, it was never discussed with my father. How does a patient know to ask about a drug which is not disclosed? How does a patient determine what risks to accept when their physicians hid information?

  208. Thank you for this article. I am just recovering from a quintuple bypass( CABG ) surgery. Which was drama to say the least - and i was low risk candidate going in ! but many of the reactions you describe upon asking questions are so true. Doctors turn icy and hostile interpreting them as lack of trust !! and one is often left with little choice .. and time to make an informed decision. i asked to see videos of the blockages .. and ran against the barriers of .. " it takes long to get them" , "not sure if our sytems can read them anyway" - so .

    there are also many other "system" issues i observed stemming from the whole process being "hero doctor " centric ! but i shall stop here!

  209. Unfortunately we're led to believe that Drs know all, and they understand that expectation. They don't! Sometimes because there is not an honest fact based answer to a question, or your doctor never knew or the info has escaped their memory. They are human beings after all. Like some of us they become embarrassed or defensive when they are unable to respond to the interrogation. Like doctors we patients can't know or understand everything required to make the best decision about our medical care. There in lies the fallacy that in the future patients will be in charge of their own care.

  210. Patients should get a second opinion on surgery. A second opinion on cancer treatment is a good idea.

    DO NOT seek advice from internet message boards or blogs. If you're willing to read technical materials, search MedLine for articles about your illness, treatment options, drugs and their side effects, etc. Verify that each journal publishes "peer reviewed" studies (some MedLine journals are not peer reviewed). Look up terms you don't know on line. Print copies of articles and take them to your next appointment.

    Orthopedists will not like this: for joint problems, start with a rheumatologist. They will know if there are non-surgical treatments for bad joints. Orthopedists think in terms of surgical fixes, which may be necessary.

    Both soft-tissue and bone surgery should be done when necessary, but if there's a fix that doesn't involve surgery, give it serious consideration. Surgery can take a long time to heal. (The first couple of hours after you wake in recovery can be brutal, but the pain backs off quickly. Ask for pain meds, it doesn't make you a sissy. The nurses assume you'll let them know when you hurt.)

  211. I could not disagree more with your advice about message boards and blogs. As someone who suffered a mild TBI nearly 3 years ago, I have had to be my own investigator, advocate, and test subject. Doctors will prescribe medications assuming they have been tested on people with TBIs when they haven't. When I find things online written by other TBI survivors, I get the validation for my side effects that my doctor refused me. I also find info on simple treatments regarding diet/supplements and exercise (mental and physical) that most doctors won't take the time to learn about, or disparage because they aren't from big pharma.
    There are two problems that this article doesn't take into account: 1.) Not every medical condition has been given the same amount of research dollars and attention, so what doctors think they know may not even be accurate. Case in point: now that the DOD/VA are doing so much more research into TBI, there is the theory that the much-maligned and dismissed 'post-concussion syndrome' might actually be manifestations of neuroendocrine dysfunction. Too bad for all of those people who were told they were just malingering. And 2.) how can doctors who are expected to treat perhaps dozens of different ailments possibly keep up to date on every new discovery and treatment guideline? They can't, and they should be able to admit it. When informed patients do bring in peer-reviewed studies to discuss, doctors' egos lead them to stubbornly dig in and stonewall.

  212. The problem with informed consent is the complexity of the information. I would have to summarize, in lay language, what I learned in 4 years of medical school, 4 years of residency, and 16 years of practice, some of the reasons for a treatment. I could prescribe the same medication for the same condition and two people may have completely opposite side effects. While all treatments have side effects, so does NOT treating. And I have patients forget information right after I spent 10 minutes explaining something. And all that in the 20 minutes I am allowed to see a patient. I could be such a great doctor if only I had the time. Hence the proliferation of concierge practices in areas able to support them; it allows doctors to take the time they need to provide good care. My ethics don't permit me to only take care of the rich, so as I struggle daily to provide good care, I will burn out in just a few more years.

  213. I wish I could "recommend" this comment several thousand times.

    First, I think this editorial is irresponsibly written. The system within which healthcare is provided is broken and fractured. Out healthcare system is currently being run as a business, which it is not. Insurance and for-profit healthcare systems are trying to pay their CEOs unheard of salaries, and physician's are being given more and more administrative work to do in less and less time because they have to see more and more patients to pay their bosses bigger and bigger salaries. Look it up. It's all true.

    Medical information continues to expand at lightening speed. We are asked to present complex and nuanced information to people who are afraid, often don't have long term relationships with the doctors who give them this complex information, which diminishes trust and the ability to communicate effectively.

    I beg of anyone reading this to investigate single payor systems. Give physician's reasonable salaries rather than a per-patient salary, give them more time per patient, eliminate the insurance and business types who demand huge salaries for no value, provide an electronic medical charting system that is easy to use and communicates relevant medical information instead of bean-counter nonsense. This will improve doctor-patient relationships, increase the amount of time that can be spent, improve communication and understanding, and reduce the burden on physicians for administrative nonsense.

  214. Nationalized healthcare? The AMA fights against it tooth and nail.

  215. Yes, there is the idealized world where "directors of coaching in healthcare communication excellence" tell us what truly informed consent would consist of. And in that world we would all have 3 hours to discuss it, then have everyone come back on yet second occasion with a posse of "advocates" in tow to further discuss all of the ins and outs and possibilities and options. Then there is the real world, where time is extremely limited (not by our choice) and we have to compete with all of the misinformation available to everyone via Google. By the time I have gone through an exhaustive review of all of the various osteoporosis treatment options and their side effects, expending more time than I (we) had available (making the next patient waiting in the room next door angry), patients then often say no to any of it. And in that same real world? I can't even get people to get their flu vaccines.

  216. I am unmoved. In my real world, medical decisions affect *my* life, not my doctor's. I'll ask as many questions as I need to ask, and I'll take as much time as I need to take.

    If you're as dismissive of your patients in person as you are in this comment, no wonder they aren't compliant.

  217. You could not be more spot on. Paternalism in medicine is old school.

  218. My husband's oncologist showed annoyance, answering sharply, on several occasions when my husband asked questions- he was on medications which made for fuzzy thinking so was not digesting much of the information.
    On coming home after one such occasion I phoned the doctor and asked him if he could "be a little kinder" when talking to my husband- boy did I get bawled out!- He was right and we were wrong to question him- he was the doctor and knew the best way to treat my husband.
    How can one give informed consent for something that has not been well understood and are intimidated by someone who has too short a fuse and too high a regard of his own infallibility to listen to you?

  219. I did a thesis about this very subject in college for my masters degree. When the room full of nurses (old and new) heard my topic the room busted out in laughter. "What informed consent." Seventy-five percent of the nurses agreed that the surgeon gave the nurse the consent and asked them to have the patient fill it out and put it in the chart. I fully expected this as I have been an RN for 40 years and a nurse anesthetist for over 25 and saw the same thing in both rural hospitals, community hospitals, and university based hospitals committed to teaching. Most, and I mean most patients when asked what kind of surgery they were having when coming to surgery had really no idea except that the doctor knows what he is doing or the doctor said I needed this.

    As a patient in a large teaching hospital in Michigan my surgeon, cardiologist, and nurse practitioner all explain to me the procedure, expectations as well as complications. This was a first but they did know I was a nurse anesthetist with a lawyer husband.

    If doctors could only treat each patient as if they were someone they loved wouldn't that be nice.

  220. You could also take a look at, a free database of health-related information for the public. It does not replace the advice of a doctor, but can give you background information about your condition, along with various treatments, including drugs. It contains some easy-to-read materials and an encyclopedia.

    MEDLINEplus is produced by the National Library of Medicine and includes information from reliable resources such as the Mayo Clinic, the National Cancer Institute, and the American Society for Gastrointestinal Endoscopy. Some information is available in languages other than English.

  221. And ask about the anesthesia. My grandfather died on the operating table from anesthesia. Ok, it was a long time ago and what they use has changed. I knew that and the doctor blew me off with that fact set but refused to discuss what he might use. When I pushed for what he would use so I could read up, he canceled the surgery.

    So, what happens when you ask good questions and the doctor fires you? I ended up at a different hospital after that because my doctor could not find an anesthetist after I was "fired".

    What I also found out along the way is how many doctors at that "best hospital" in California with difficult anesthetists were themselves on drugs. How did I find it out? When the doctor who lived next door lost privileges after being arrested for dealing. Doctors should have routine drug tests by the way.

  222. I would say the vast majority of patients listen to a diagnosis, their doctors recommendations, then nod their heads and say ok, guess we gotta do it. It's a "doctor knows best" mentality. Informed Consent is just a formality for most.

    Medical folks could do a better job of putting everything into layman's terms, in order that patients have some understanding to even go forward with questions. That includes PAs. and nurses. Just because they live and breath medical jargon doesn't mean your typical patient understands it.

  223. There's one thing. My buddy who was a trauma surgeon got cancer. He was a pretty good surgeon and they've named the level 1 trauma center in New Orleans after him. I asked if he had been reading about his cancer to be more informed patient. He said, "Why would I do that? Would it be helpful for the oncologist to pipe in with suggestions on how I stitch her bowel after a gun shot wound? I picked the right doctor. Now I'll let her do her job".

  224. We recently had a consult with a wonderful surgeon for an issue my wife is dealing with. He talked to us for a half hour, patiently answering every question we had. I was wondering how he had the time for this, he was unlike any doctor I had seen before and was so generous with his time and information. Then we found out that he doesn't take insurance. He's free to use his own judgment and does not have to see 10 patients an hour, and can actually take the time to help us make an informed decision. That was a revelation. Unfortunately, we are not in a position to pay the full price he commands, even after the generous discount he offered. But what a refreshing change he was. I can't help but think the HMO governed practice of modern times is a major impediment to proper doctor-patient information exchange.

  225. Sickness care is a service. All services come at an economic cost. Some countries deliver sickness care more efficiently, ie with better bang for the buck, than others do. The USA is not just expensive but relatively inefficient at delivering sickness care.

    If you, the patient, are very rich then you can employ your own private physician full-time. In fact, you can afford to employ a whole bevy of medical specialists, nurses with specialised training, medical auxiliaries, technicians and other hospital staff whose only job is to see to your needs.

    Hence, for example, if your name were Kim and you were in supreme charge of a nation-state, then for you the costs of your care would not be an issue. For the rest of us? The cost, directly borne by us, or indirectly by other policyholders or by other taxpayers, will always be a major determinant of the quality of the sickness care we receive.

  226. When I was a member of one of the CDC's Institutional Review Boards, I reviewed many informed consent documents for clinical trials. And yes, a few were 20 pages. The best consent I ever saw had a series of True False questions at the end that the participant had to answer to make sure they understood the main elements of the protocol. If any questions were missed, the study coordinator reviewed the correct information and at that point, the consent was signed. This is how they all should be done.

  227. Thanks for pulling back the curtain on the current farce of informed consent. By their very nature, medical decisions can be enormously complex. There is the risk of the medication or the procedure. There is the risk of not taking the medication or having the procedure. There are the vast intricacies of the human body and mind. And there is usually about 10 minutes at most to explain it all.

  228. #8. Put your phone away, shut off the ringer, stop texting and pay attention.

  229. As an anesthesiologist, I (and many others in my specialty) take issue with the line of "for that to happen you'll need to undergo anesthesia from which you may never wake up." There are many potential causes that can lead to devastating complications, not "just anesthesia", ranging from life-threatening allergic reactions to a number of drugs, to a surgical complication, to rare transfusion reactions, etc. While I understand the authors' intent, the line smears the extraordinary advances and training that have made anesthesia much safer than it has ever been.

    What should a patient do prior to elective surgery to learn about options in anesthesia? The best thing is to ask to see an anesthesiologist in the pre-anesthesia assessment visit/clinic which is very commonplace. At the visit, you can have your specific questions answers - from medications that you've heard about (like propofol, or ketamine as one commented below), to pain management, to the type of anesthesia (general, regional, neuraxial), etc. We use our best judgment to design and tailor the best anesthetic for every case. Please do note that although we often have a couple options in terms of anesthetic plan, depending on the surgery and patient's history and medical problems, one option would often be the overwhelmingly preferred and SAFER choice even though the patient might want the other because a family member had a good experience, for example. Ultimately I agree, education is KEY.

  230. How about doctors start by telling me how that procedure costs? I'd rather not be duped on the odds and then regret the bill later.

  231. All very good and sensible advice.

    But the doctor has a maximum of 15 minutes to spend with a patient. The MBA overlords are watching the clock, and the doctor will get a thorough dressing down about cycle time metrics if they spend any more time than that. And most of those 15 minutes have to be spent entering data into the Electronic Health Record. If the record is incomplete, it means more dressing down from the MBA overlords about poor performance in charting metrics. In a high-efficiency medical factory, a doctor is a mere a "provider," the lowest level in a hierarchy dominated by the MBA administrators responsible for maximizing shareholder value, which is the company's only purpose.

    So when would a doctor have any time to answer questions, explain things, or for that matter to even look away from the screen and keyboard at the patient? That's not a priority, and the doctor would face punishment from the MBA overlords for wasting time on things that aren't priorities.

    For that matter, what happens to a patient who does not have a family member available to serve as an advocate or "accessory brain"? The unfortunate reality is that the American medical industry does a great job of serving the needs of administrators, insurance companies, lawyers, and particularly corporate executives and shareholders. The needs of patients come last. We could do a lot better, but that would be at the expense of all those other interests. And they won't allow it.

  232. 1. In my primary care physician's practice most of the routine information that needs to be entered into the EHR is gathered by a nurse and/or tech. Same for my best friend's PCP although he types a lot as hers is a complicated case and he knows we two late 60s technophiles are comfirtable with him doing so. His spirited vocal communication, the hands on exam, his receptivity to our questions and the long term relationship help, too. 2. I'm not sure that there is a ready replacement for an "accessory brain". With my late husband,, late mother and best friend wnen I was the accessory brain I have sometimes prefaced questions of their proposed actions with the comment, "I only have one patient." I wasn't perfect either but in a number of situations I was able to provide used information because I was not focusing on anything other than one situation.

  233. This article took guts to write.The reality is that if people wanted to be that knowledgeable, they would have gone to medical or law school themselves.

    The whole system is a game of Jenga.

  234. And what do you do when the doctor becomes so enraged by questions that he and his staff slowly cut the patient out /off (calls go unreturned; appointments canceled; patient labeled difficult in records patient can't see; records disappear; doctor no longer remembers patient) while maintaining a public face of concern.

  235. Non-Indepentent "patient advocate" confers with "practice mgr." Records are No t retained OR destroyed. Patient Loses.

  236. It depends on where you live. In a major metropolitan area you change practices. In small cities or rural areas you may or may not have good options.

  237. Thank you for summarizing what patients should do when they have serious decisions to make. One choice you didn't mention: It's possible to have surgery without general anesthesia that involves intubation. Due to difficulty breathing after minor surgery, I chose to have other anesthesia during major surgery. The outcome was much better and recovery somewhat easier. Had a friend of mine who had COPD known this (or her doctors considered it) when she had a hernia repair, she might not have died of hospital-acquired pneumonia after the surgery.

  238. Excellent advice. Thank you for this almost heartfelt article about the often heartless process of health care.

  239. I'm a nurse, helping take care of my elderly parents. My Dad, 87, is still a practicing physician. My Mom is a retired nurse. They both still drive, but I tag along to various medical appointments. I'm here to tell you the system is broken, from insurance companies to doctor visits. We are 3 medical professionals who can barely weave through all the obstacles and disinterest put in our way, not least of which is practitioners who are glued to their computers typing notes and not paying attention to their patients. I'll add here that my Dad is an exception, old-school MD, who works part time in a nursing home, on call 24 hours a day and beloved by the residents nursing staff for his conscientiousness. Generally speaking though, our health care system is BROKEN.

  240. The best sit-down-and-talk with a doctor that I've ever witnessed was when a relative required the services of a plastic surgeon.

    The doctor spent about an hour discussing what would be done, potential problems, what the patient should do before and after surgery, medications .... It seemed to go on forever. If a doctor can be this thorough over a pair of heavy eyelids, surely they can do the same for cardiac surgery or chemotherapy.

  241. Cash paying patient in plastics.

  242. Really the ultimate test question is just this:
    " if I was your this what you would do?... could you live with the complications?....would your conscience be clear Doctor? Would you be able to sleep?"

  243. Doctors are for cuts and broken bones - like mechanics for human bodies. Once they start experimenting on you with drugs supplied by their best buddies in Pharma, then you're in trouble.

  244. When I was in high school, I had to accompany an uncle who did not speak English, to see a doctor about a problem at a major hospital. What I got was this:
    1) The doctor was too busy, so she sent a nurse.
    2) The nurse, I realized in retrospect after many more decades of experience in life, must have memorized the relevant entry from the Physician's Desk Reference with all its medical jargon, and just downloaded it all to me, asking me at the end, "did you understand?"
    3) As a teenager not wanting to appear stupid, I said of course I did, I attend one of the best high schools in the city!
    4) Then I was supposed to translated all this into Russian, the language my uncle spoke, which of course I could not and did not, telling my uncle, "oh, it's nothing, they took care of it."

    As a lawyer today, I tell my doctors, either you take the time to tell me now or you can take 5 hours to tell me at a deposition. ; ) I don't actually say that, lol, but I know I can.

  245. So you are writing that you lied to the nurse, and then you lied to your uncle. And we are to trust you as a commentator of how things should be done? You took the easy road too, when it suited you. The essence of hypocrisy. Not particularly surprising that you are a lawyer.

  246. I would say that she/he was trying to compensate for a medical system that *should have had a translator* available to directly instruct the uncle, and it shouldn't have been the job of a teen at all. This was a breakdown in the system, which I believe she/he was showing.

  247. how typical that it's the "Doctor" who still doesn't get it.

    so bitter too, wonder how many times Doctor has been sued.

  248. They are Doctors, not Gods. Just because they tell you what you need, does not mean you need to agree blindly. Do your own research, ask questions, make your own decisions, follow your instincts and do what is right for YOU.I took it upon myself to find out what my options really were and didnt simply follow what various doctors insisted I should do. I can live with the Doctors thinking that I am a very disagreeable person because I question everything and with family and friends who were unsupportive because of my attitude. I am happy, healthy and cancer free after having both Ovarian and Breast Cancer and I still have both of my breasts, all of my lymph nodes and my uterus. I am not just lucky, I am my own health advocate and you should be too, because NOBODY cares as much for your own needs as you. Be strong. You are worth it.

  249. When you are sick, shopping is the LAST thing you have the energy to do well. Just when you feel unimaginably puny, your life depends on the best version of yourself taking the stage . I have never understood a 'market based' healthcare system, making you shop and study data like you are shopping for a car. Good grief!

  250. Indeed. I'm not opposed to capitalism as a rule, but it does not belong in healthcare.

  251. 2 weeks ago I was admitted to a university teaching hospital. I've gotten great care for the most part.

    I had an atypical intractable migraine. From the PA student all the way to the neurology attending I saw 16 people. I had to tell my story 16 times. Not one person asked me about my psychological state. I was unable to be my own advocate for the first 18 hours because I felt so bad. Most migraines are related to the psychological issues of the patient. Finally when the 3rd year resident came in with a medical student I brought it up because I do have a psychological diagnosis. They listened closely and I believe it was talked about before they made grand rounds. I know they heard me however will they be mindful with other patients?

    The body keeps the score.

  252. I learned while my husband spent portions of his last months in a teaching hospital that one of the things the interns and residents are practicing is how to take a medical history. On the other hand, as a patient your primary job is to get well (or at least better) and you would not be there if you were at your best. Given that, what you did with the resident and medical student looks to me like both a teaching moment and a potential good step towards your getting better. I hope you feel well enough to keep up the good work.