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The Nuances of Informed Consent

Modern medical ethics are built upon the concept of informed consent. This is not, however, as straightforward a concept as it may seem.

Physicians and health care providers have a duty to provide informed consent to their patients or their patients’ guardians, which means that they have to inform them appropriately about the risks and benefits of their recommendations and interventions. This includes informing them about the risks of not treating an illness.

This principle is, in turn, based largely upon the principle of autonomy – people have the right to control their own lives, and one cannot have control without information.

This is all simple enough, but where it becomes tricky is in deciding how much information to give patients, and how to present it.

A recent study looks at how physicians talk to vaccine-hesitant parents about vaccinating their children. The study found two interests things – the first is that when physicians began their discussion with, “Your child needs to get his shots,” (presumptive style) the success rate (percentage of hesitant parents who accepted vaccines) was significantly higher than when they began, “what do you want do to about giving shots?” (participatory style).

In both cases physicians were meeting both the letter and spirit of the requirement for informed consent, and parents ultimately made the decision. The difference was in presentation style. Therefore, within the parameters of ethical informed consent, there is wide room for different behaviors that have a significant effect on the ultimate decision made by parents.

One might think of this as manipulative, which is true in the trivial sense that all social interaction is potentially psychologically manipulative. In any case, no one style is objectively more ethical than the other, and both have a psychological effect on decision-making.

This brings up the deeper point – is the duty of the physician only to provide information or is it also to steer their patient toward what they think is the best decision? How much “steering” is ethically acceptable? At some vague and fuzzy point a recommendation becomes pressure, and at some point pressure becomes unethical.

I don’t think the presumptive approach constitutes undue pressure. It is simply one way of a physician to state their recommendation, which is as much part of their duty as informed consent.

Let me give another example – how much do you disclose to patients about your differential diagnosis? It’s generally accepted that you do not mention the most horrible and scary things on the list up front, especially when they are unlikely. If a patient presents to me with headache, it is very unlikely that they have a brain tumor. Still, if they meet criteria, I will order imaging to rule out a tumor or other underlying cause. What if the patient refuses imaging?

Certainly I am not going to tell every one of my headache patients that there is a very small chance they may have brain cancer. I’ll just get the MRI scan and rule it out. This is a case in which giving a patient more information will only serve to cause unnecessary anxiety. But if the patient refuses imaging, for whatever reason, then my duty changes. Now I have to tell them how important it is that we image their brain. I am, in fact, obligated to keep increasing the amount of information I give the patient to more and more scary details until either they agree to the scan or I have done everything I can to convince them to get it.

Style and context therefore matter to informed consent. Another significant factor is – how much information is enough? When I prescribe a drug to a patient I discuss with them common side effects, any potentially serious side effect, and other options, including not treating at all. However, I have to choose from professional experience and judgement which details are important. There are not enough hours in the day, let alone time in an office visit, to discuss the entire list of potential interactions and side effects of every possible treatment option. To some extent the patient relies upon the physician to hit the highlights.

If the patient is still uncertain, or they want more information, then I can direct them to the package insert or to online information where they can read up to their heart’s content all the information they want. I can then help them put that information into clinical perspective.

Also – and this is very tricky – it is possible that more information may cause unnecessary anxiety and actually confuse decision-making. Marketing research shows that people want choices and information, but too many choices and too much information causes anxiety and paralyzes their decision-making.

In the context of medicine, a patient may read about a rare but scary side effect of a medication and decide not to take it, even though the risks of not taking the medication vastly outweigh the risk of that potential side effect. People do not necessarily weigh risks rationally.

This brings us to the ultimate context of this topic of informed consent – the notion of informed consent assumes that people are rational actors who will make the best decisions in their own self-interest if they are properly informed. I agree, from an ethical standpoint, this is a reasonable approach.

However, a century of psychological research has shown that this is not true. People are not rational actors, we are psychosocial actors. We make decisions from a host of cognitive biases, motivations, and social influences. This includes, most pertinent to medical decision-making, risk aversion and loss aversion. People, for example, may expose themselves to a greater risk because they are averse to a much smaller but psychologically more dramatic risk.

The role of the health-care provider in terms of informed consent, therefore, is not only to provide raw information to their patients but to present it in a way that puts that information in the proper context, including psychological context. The physician is the lens that puts that information into proper scale and focus.

Of course, for this to be the case the physician has to first have the information in proper context, which means stepping back from all the cognitive biases of human psychology and looking at the information from a rational and statistical perspective. Physicians have to understand their own psychology and biases as well as those of their patients.

In short, good physicians need to be skeptics. Informed consent requires nothing less.

Posted in: Critical Thinking, Medical Ethics, Science and Medicine

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51 thoughts on “The Nuances of Informed Consent

  1. Liz says:

    I have found that it is important that you find a doctor that shares your bias. A very active and thrill seeking person is not a good fit for a very cautious doctor. Equally a quiet, risk adverse individual is not going to work well with a Doctor who encourages a very active lifestyle and downplays risk. Our medical system encourages testing and as Harriet Hall explained in her post certain tests are necessary. But I have seen too much over testing by Doctors who feel they must rule everything out or risk liability as well as over prescribing of medications.

    1. windriven says:

      You’ve hit on a very important point. But finding the right physician, especially one’s PCP, is difficult, time consuming and expensive. First, when you call the physician’s office announcing yourself as a new prospective patient and that you’d like to have an introductory meeting with the doctor, half of the receptionists are incredulous. Perhaps they aren’t sure how that should be encoded for insurance purposes. Then the appointment is scheduled for next never. Eight to ten weeks is not unusual, at least in my area. Then, the doctor, not knowing you from Adam’s housecat, generally gives vague answers to even pointed questions. It is easy to spend huge amounts of time and money on the process. It took me several years from the time I moved to the PNW to find a new PCP (and I met a few doozies along the way). Ultimately, it was the recommendation of another physician that linked me to my internist.

      The time to figure out that you are not well matched with your physician is not in the middle of a medical emergency. Some of us are able to spend the time and money. What about those who are paid an hourly wage and have to take time off from work to see a physician for a problem that they don’t yet have?

      1. goodnightirene says:

        I’m usually good with whoever is taking new patients (I’ve moved a lot) and stay with him or her unless some glaring problem arises–any mention of “integrative” anything would be such a reason.

        Maybe I’m just not as discerning as you or maybe I don’t see any doctor enough to have problems.

        I DO go through gyn’s much more quickly than PCP’s, though. I have had many of them (male and female) try to sell me on “herbal” approaches to serious menstrual difficulties. I do not go back if this occurs. I do not ask ahead as I want to know if the doctor in question is buying into this stuff to begin with–I don’t want her simply not mentioning it with me simply because I have already said I’m not interested in that rubbish.

        1. windriven says:

          I am probably unusually careful in choosing physicians. This is a holdover from my early days in the ‘retail’ part of the medical industries. I once spent most of my time in hospitals and in close company with a lot of physicians. The quality range of physicians is considerable and follows, I suppose, a more or less standard distribution. But I must say that those on the left tail scare the crap out of me.

          A physician friend of mine pointed out to me that once medical school is over both the brilliant and those who barely made it have MD after their names. You don’t want to find out where your physician falls on the curve when you are in the middle of a medical crisis.

          So I spend the time. I ask questions. I probe. I challenge. And in my experience the good physicians appreciate it. That doesn’t mean that you have to agree on everything, only that each party has a clear understanding of the other and that the approaches don’t clash.

          1. James says:

            Windriven,

            My wife and I are looking for a new pediatrician.
            In your opinion what are some good questions and to ask?

            1. windriven says:

              James,
              A lot depends on what you and your wife want and need in a pediatrician. When I had small children I simply asked some physician friends who they took their kids to. Interestingly, they almost all said the same guy.

              I would ask first about vaccinations to be sure they are consistent with the recommended schedule. I’d also ask about using multivitamins and supplements as these are the gateway drugs of woozy thinking. If you have a male child I’d ask about circumcision because there is considerable controversy about it and you should see how the doctor deals with slightly uncomfortable subjects. And I’d ask if they work with any chiros or naturopaths. On a practical level you also want to know who covers their practice when they are on holiday or otherwise off-duty. I learned that lesson the hard way with an OB.

              In short, start a conversation with some of the obvious markers and the let the conversation follow its natural course. If the physician is pretty well science grounded you should be able to read that. If something is said that raises a question, press the point until you understand what is behind it.

              You’ve had some less than stellar interactions with physicians in the past James, so I’d recommend that you go out of your way to be sure the pediatrician is someone you can work with. Physicians get drawn to particular specialties for reasons. Ask why your candidate was drawn to pediatrics.

              If the candidate is sympathetic to your quest to find the right pediatrician, if he or she spends the time to answer your questions in what strikes you as an honest and forthright manner, and if their approach is consistent with your expectations, you’ve probably got a winner. If the candidate is hurried, brushes off your questions or concerns, or is aggressively interventional (presuming that isn’t what you want), keep on looking.

              1. James says:

                Thank you for that great advice!
                That is a interesting point with multivitamins and supplements.
                I like it as way to separate the wheat from the chaff.
                I do not know many doctors who have kids where I am.
                I do have the next best thing the children of doctors who have kids.

                Windriven Thanks again

              2. JamieLeigh says:

                First off, love the quote “…using multivitamins and supplements … are the gateway drugs of woozy thinking”.

                I was discussing acupuncture, herbal supplements, vaccination, etc. in my most recent visit with an Internist. I am 26 and very picky when it comes to doctors. She and I had the same view on almost everything, except acupuncture.. She seemed convinced that there is “something to it” and actually uttered the words, “well, there can’t be evidence for everything”… Yikes. At least I have been lucky enough find an AWESOME gyn.

  2. windriven says:

    Great post, nicely wrapped up at the end.

    “There are not enough hours in the day, let alone time in an office visit, to discuss the entire list of potential interactions and side effects of every possible treatment option.”

    This is an issue of medical economics, not one of ethics. I wonder why more professional societies don’t produce multimedia resources to which physicians can steer patients needing more information. There is some, usually in the form of bland and nearly contentless little brochures. And there is lots of ‘stuff’ on the web but much of it is of shady provenance and questionable accuracy. This is a missed opportunity for the profession to address its ethical responsibilities in a cost-effective manner.

  3. Craig Good says:

    Back when I was in sales this was taught to me as the “assumptive close”, as in “would you like that in red or in black?” I agree that in this case it is an appropriate manipulative technique.

    As for patient info, I’m the weirdo who always wants the straight dope. I tell my doctors that I know they have three versions: The one they tell the patient’s family, the one they tell the patient, and the one they tell their fellow doctors. I ask for the latter, but in language that a first-year med student could understand.

    I like Wind’s suggestion about resources. “If you’d like to research more about this, here are some web resources that have good information: Science Based Medicine, …”

  4. Mike says:

    “In short, good physicians need to be skeptics.”

    So do patients for that matter so do policemen, firemen, bakers and candlestick makers. Critical thinking should be taught in schools, it is often our only defense in the “information age”. Especially when so much of the information we are bombarded with is B.S.

  5. Cervantes says:

    It is indeed true that people’s decision heuristics are not generally based on a lot of explanatory depth or cognitive processing; and that the capacity of physicians to get complex concepts into people’s heads in way that they can use effectively to their own benefit is limited.

    But, you left out something important. When you order an MRI, there is a very good chance that the patient will be saddled with a substantial co-pay, maybe $250 or more. Doctors (apparently including Steven Novella) don’t generally mention that. It isn’t much money to you, but it’s a lot to many patients. I think this compels you to a) discuss the co-pay which means b) you also are obliged to tell them why you think it’s worth it. Unfortunately, I don’t see any ethical way around this.

    1. mousethatroared says:

      Try a $3000 deductible…urghhh.

  6. Carl says:

    I think the question “what do you want do to about giving shots?” is actually open-ended to the point of absurdity and even misleading. It implies that the doctor has no idea what should be done or what choices a normal person should make about vaccines. Hell, don’t the vaccine pamphlets tell you to ask your doctor?

    Are doctors also asking things like this:

    “Are you going to feed the baby?”
    “When do you think I should do the next checkup?”
    “Are you going to use diapers, because people ask me every day and I totally have no idea if you should.”

    1. goodnightirene says:

      I totally agree with you and had a very similar reaction. Perhaps the example was purposely extreme to make the point?

  7. mousethatroared says:

    “Certainly I am not going to tell every one of my headache patients that there is a very small chance they may have brain cancer. I’ll just get the MRI scan and rule it out. This is a case in which giving a patient more information will only serve to cause unnecessary anxiety. ”

    Nooooo, now all us anxiety prone people have to worry about what the doctor is NOT tell us, because they are trying not to make us anxious….

    Just joking, I worried about that before reading this article. For awhile I worried that doctor’s might not be telling me everything…but then I started to detect a certain vague tone that tended to come up only occasionally. I think of it as the “Don’t freak out the patient” tone. When you get a clear explanation of one test, then a “We like to do this test in this circumstance” explanation on another test, the later is the one to worry about. ;)

  8. Young CC Prof says:

    I think it depends on the situation, definitely. With shots, barring very unusual circumstances, every child should get them, and the trick is getting the parents’ consent without too much drama. If someone (who isn’t very elderly) has a potentially treatable cancer, it should be treated with the most effective protocol. However, there are cases where a medical decision really is a choice, and patient preferences and values matter.

    Let’s say a patient with arthritis is considering knee replacement surgery. The doctor can determine whether there really is advanced osteoarthritis, and whether knee replacement is likely to fix the problem. The family doctor (or cardiologist or whatever) can determine whether the patient is healthy enough for major surgery, or whether it’s too dangerous. However, the surgery HURTS, and there’s a couple months of intense, painful rehab afterward. TKR relieves pain and restores mobility, but you don’t get the knee of a 20-year-old to go run marathons on. The patient has to understand all that and make an informed choice. If nothing else, someone who goes into it expecting a cakewalk will be less prepared for the rigors of rehab, and might have a less successful recovery.

  9. mho says:

    I believe that patients and physicians should discuss up front what kind of doctoring the patient wants and needs. Are they the kind of patient who trusts authority and is happy to comply with the recommendations of the doctor, no questions asked (my father)? Or are they the kind who thoroughly distrusts doctors and needs to know the reasoning behind every recommendation before she’ll comply (my mother)? Gaging the amount of information needed would be easier if those personality issues are clarified at the beginning of the relationship. The doctor wouldn’t need to intuit what to leave unsaid.

  10. mho says:

    P.s. If my doctor doesn’t slightly overstate her case, I tend to let things slide. I know I’m like that, but I don’t seem to change much.

  11. Egstra says:

    ““Certainly I am not going to tell every one of my headache patients that there is a very small chance they may have brain cancer. I’ll just get the MRI scan and rule it out. This is a case in which giving a patient more information will only serve to cause unnecessary anxiety. ””

    And you think that, when you order an MRI, the patient isn’t going to think, “OH MY GOD, OH MY GOD!!! I HAVE BRAIN CANCER” ?

    1. Egstra says:

      I should note that I recently had an MRI to rule out a brain tumor. The neuro ophthalmologist made it very clear that he didn’t think my double vision was caused by a tumor but that there were some anomalies in the examination and he wanted to rule it out. I didn’t freak or anything.

  12. Kel says:

    I wish there was some sort of directoryof science-based, non-woo-friendly doctors. I have been living in this area for almost a year now and have yet to find a PCP. I’vebeen given the most quacktastic advice when they find out I have MS. So far no neurologist (I’ve tried 3, including the MS center at UCLA, who I left when she recommended bogus supplements) will treat my MS unless I have a PCP that means I’ve been untreated for about a year.

    SBM should start a directory or at least write a guide for how to find a decent doctor.

    1. There is no known cure for Multiple Sclerosis. So the quality advice you’ll be getting is mostly for symptom management. If you are a willing to consider quacktastic advice, I have some available.

      1. WilliamLawrenceUtridge says:

        Anyone else think that FBA’s link was going to be to his personal webpage? Hands up? My hand is up.

  13. windriven says:

    @Kel

    The problem is the line. There isn’t one. You are unlikely to find a large number of physicians who are as band-edge science based as the bloggers at SBM. So it becomes an issue of how close they need to be for you to be comfortable. If you come up with a simple test I’d love to hear about it.

    My former PCP was board certified in both internal medicine and cardiology. Smart guy. Pretty science based. But he had a few blind spots*. He’s still the best PCP I’ve ever had.

    He worked on the Bogalusa Heart Study and was a real advocate for statin therapy. At the time the science wasn’t there to support his general belief that your LDL couldn’t be too low. The science has moved a bit in his direction :-)

    1. WilliamLawrenceUtridge says:

      Where does the asterisk link to?

      1. mousethatroared says:

        WLU -Reading from context, the asterisk should be before the Bogalusa heart study paragraph.

      2. windriven says:

        My bad, WLU. It was supposed to link the the Bogalusa heart study remark.

  14. Vicki says:

    I had one of those, a couple of decades ago. I fell, broke my nose, and in retrospect am fairly sure I had a mild concussion. A few months later, I noticed a greater sensitivity to bright lights and that some flashing lights (on the tops of ambulances and such) were bothering me.

    My GP sent me to a neurologist. We did lots of low-tech neurology–including playing catch–and then he told me that almost certainly this was an aftereffect of the concussion, in which case there wasn’t much to be done besides make sure I had my sunglasses. But just in case, he wanted to do an MRI, because it’s not impossible for a brain tumor to happen to manifest shortly after a concussion, and if there was one it should be treated.

    So, I had an MRI. Given the explanation, I wasn’t particularly worried. As we had expected, I didn’t have a tumor. But I’m glad to know for sure–or, rather, glad to have ruled that out quickly. It wasn’t the idea of the test that made me nervous: it was that something uncomfortable that I didn’t understand was going on in my brain. Now I know, and work around things as necessary and to the extent possible: for example, I am never going back to Las Vegas, and I avoided certain parts of Times Square when I lived in New York. (Times Square is, literally, zoned for bright and flashing lights.)

  15. Robin says:

    I believe that this participatory medicine thing goes a bit far at times. I am not a doctor, but I grew up in a medical household where medical talk was dinner table conversation. One of the jokes in our family is “What kind of aenesthesia do you want?”

    My sister and I took a then 7 year old family member with an extremely rare but not life-threatening condition to one of this countries top medical establishments for an outpatient procedure. Prep was going on and we were with the child and the nurse asked us what kind of aenesthesia we wanted, then rattled off serveral possiblities. Unh? Why were we being asked this question? Was it so unimportant that people with no knowledge of aenesthesiology could make the decision?

    Staff at this hospital have expensive educations, are highly trained, and make pretty good money as a result. We’ve come to you for your expertise, please allow us that benefit. Lately it seems to be becoming increasingly rare to be able to get straighforward input from a doctor then considering courses of action. All in the name of patient participation.

    1. windriven says:

      I’ve always discussed anesthesia options with my physicians. If a waiter asked if you wanted aeoli with your bouillabaisse and you didn’t know what aeoli is, you’d ask. Same with anesthesia. Some patients want to be alert during procedures and a regional would be fine. Others want to be out till its over. And in some cases conscious sedation is an option too.

  16. Dan says:

    I am a physician, 38 years of age. I went to my GP, a new one, in the spring for an annual physical (our government has just changed remuneration of these from annual to every three years, so most GPs are markedly cutting back on the annual physical). I did not want any bloodwork done, being quite cognizant of overtreatment and what tests and procedures need to be performed at my age (principally blood pressure and testicular examination – and that’s about it). My previous GP wanted to give me a PSA test when I was 34 years old, because of a family history of prostate cancer, but I (rightly I think) declined to get this. Fortunately, my current GP agreed that I did not need any specific bloodwork testing at my physical and left it at that. Virtually everyone should get their lipids done at least once in their life but beyond that, most annual bloodwork is completely unnecessary, cost-ineffective, and all too often only leads to false positives, anxiety and further testing. Now that widescale PSA testing has been abandoned, there are not even any tumor markers that require screening in asymptomatic patients.

    My overall point is that most patients have no choice but to leave it up to their MD as to what tests and procedures they are going to get — they have no idea about things like false positive rates and cost-effectiveness ratios. This is the one area of life that I can actually have some informed input on and drive the discussion, as a patient. I’m quite aware of who does or does not need to be screened for diabetes or dyslipidemia, for example, and which health promotion efforts are most effective. I also realize that the single best intervention I can do in my own practice is dietary counselling, not that I have ever received any of this from any of the primary care physicians I have ever attended.

    1. windriven says:

      Interesting perspective. I have blood work done annually. I watch my cholesterol. I watch my liver enzymes (I consume a couple of glasses of wine pretty much every day). I do an fecal occult blood test as part of this.

      Blood tests are cheap. The complete panel costs about $100 at retail, a price I’m happy to spend. But truth be told, none of my numbers have changed much – outside of normal variations – from year to year.

      I’m surprised that you’ve never had an dietary counseling. Perhaps this is less common in Canada or perhaps your phenotype doesn’t suggest its necessity.

      1. Dan says:

        There’s absolutely zero evidence to support annual liver enzyme testing, even with many drugs that may affect liver function (for example, the FDA has directed physicians to stop doing liver enzyme testing for patients taking statins). I’m sure you could come up with an anecdote of someone with liver cancer detected by liver enzyme testing, and it’s possible it was even detected at an early (curable) stage, but this does not constitute evidence in my view.

        Unfortunately, 90%+ of what goes on at the doctor’s office – primary care – is not evidence-based, largely due to absence of supporting RCT data. I believe there is a study that confirmed this estimate – I am not simply pulling it out of the air. I very much wish primary care providers (family docs and general internists) would stop performing shotgun annual bloodwork panels in healthy individuals who have no symptoms of disease (again, I’m sure you can find an anecdote of someone with screen-detected borderline anemia who ended up having colon cancer – but this is not evidence). For the amount of time that patients spending fasting and having the blood draws, physicians spend filling out requisitions and reviewing bloodwork results, clinic staff spend entering those results into an EMR, and repeat consultations that inevitably arise as well as phone calls from patients calling in to ask for their numbers, using this time for lifestyle modification counselling could provide much better dividends to patients (and have the added bonus of sharpening up physician communication skills!).

        1. windriven says:

          Dan, I hope I didn’t leave the impression that I believe annual ‘zymes to be science based. I don’t. I take an IQ test every couple of years too, on the entirely unscience-based notion that it would be a good early warning for Alzheimer’s.

          I absolutely agree that anecdotes are not evidence and that much in medicine is still not science based. But you go to war with the army you’ve got and hopefully you work like crazy to build the army you’d like to have.

          One of the reasons I get so riled up about the amount we spend on health care in this country is that it starves funds for other uses – including medical research. We waste something on the order of 1.25 trillion dollars on health care every year (% of GDP comparison with OECD). If we used just 10% of that for medical research – $125,000,000,000 – imagine what could be accomplished.

  17. Anthrodoc says:

    One thing about working in other countries is the differences in the underlying assumption of individual autonomy. This summer I did a pilot study on rural Russian children. Trying to get parental consent and children’s assent was all but impossible. They are so used to completely trusting doctors and nurses that no one, even the local nurse I was working with, understood why I wanted parents to sign a consent form before we touched their children. It eventually felt like cultural imperialism after the third straight day when teachers just marched their whole class down to get measured. So I tried to find a compromise and just did the most basic of measurements in the presence of the teacher and didn’t have them remove clothing (except shoes for the height measurement). None of my ethical training (certified in 2 western countries) prepared me for that. This side of the ethical conversation is lacking, even though the declaration of Helsinki has finally been updated to try to address these issues.

  18. Chris HIckie says:

    When the vaccination part of the visit (at the end) arrives, I usually say something like “Your child’s growth, development and exam are all normal today. Now it’s time for his/her vaccines so let’s talk about what s/he is due for today to protect your child against some pretty nasty diseases”

    Seems to work pretty well.

    1. WilliamLawrenceUtridge says:

      I suspect (and the stats bear me out) that the antivaxx nutters make up for in volume what they lack in numbers. I’m not surprised that you haven’t run into much in terms of objections. Particularly if you aren’t in an area where the nutters tend to gather like (unfortunately for Dr. Crislip) California and Oregon.

      1. windriven says:

        And Washington, home of Bastard College.

  19. Iorek says:

    This is a question about consent that has been bothering me for a while.

    How far is too far for a parent to go in guiding a young adult in her medical decision making? Is it wrong-or disrespectful of her autonomy-for me to ‘manage’ her into following medical advice, despite her initial desire not to?

    This arises as my newly adult daughter (recently 19, the age of majority is 18 in Oz) has been unwell all year-lots of doctors, investigations, procedures, drugs and hospital admissions. We’re homing in on the trouble but we are not there yet.

    Her resistance to proposed investigations or treatments is often about her frustration that the doctor can’t ‘just fix it’.

    My input is intended to get her to a point of acceptance sooner than she would otherwise get there, not to push her into decisions she would not otherwise make. She makes good decisions generally, and I stay out of the ones I don’t think are so good, believing that the odd skinned knee or adult equivalent is a healthy thing; but serious medical decisions need consideration beyond what I believe is her current level of maturity.

    If I was dealing with an aged parent with limited capacity I’d have no hesitation about what I’m doing; when she and her brother were children I involved them in the process of decision making while reserving the right (and responsibility) to make the final decision on their behalf. Now I’m doing what seems best but am without clear guidance apart from my own judgment.

    Any thoughts about how best to navigate this situation?

    1. Kathy says:

      It’s great that your daughter has gotten used from a young age to the idea of taking some responsibility. Maybe this is a good time, this transition stage of her life, to discuss the matter of decision making with her and tell her what you just said in this posting. Resistance may be as much against parental decisions as against the treatments/doctors. If she knows you are taking her growing autonomy seriously, it could ease that situation.

    2. WilliamLawrenceUtridge says:

      Books; she might be interested in reading some books on medical decision making and how doctors come to know what they know, for both individual medical cases and for the scientific literature overall. Groopman’s “How Doctors Think” was one (I didn’t like it much), but books criticizing alternative medicine are also good because they show how things can go wrong. My standard list is “Snake Oil Science” by R. Barker Bausell, “Bad Science” by Ben Goldacre and “Trick or Treatment” by Edzard Ernst and Simon Singh. “Mistakes were Made (But not by Me)” By Elliot Aaronson (Aaron Elliottson?) and Carol Tavris is also good, simply because the book shows how human cognition can go awry. It’s hard, with the arrogance of youth, to tolerate error and uncertainty in others – but understanding that you will make mistakes, but that doesn’t make you stupid, can help.

      But my best advice comes from my grandmother. Never get old, it’s terrible.

      1. mousethatroared says:

        WLU “But my best advice comes from my grandmother. Never get old, it’s terrible.”

        Hey! Are we related?

        1. Harriet Hall says:

          Not getting old would mean dying young. My Dad used to say “Getting old is Hell, but it sure beats all the alternatives.”

          1. WilliamLawrenceUtridge says:

            My ideal scenario involves neither getting old, nor dying.

            I have no solution for population control. Faster-than-light travel to distant habitable planets?

          2. mousethatroared says:

            Sadly, my grandmother outlived both of her daughters, she also had very bad arthritis (her rheumatism, she called it) many years, but it was only after my mom passed that she started telling us all, “Do get old.” ..what are ya going to do?

    3. mousethatroared says:

      Sounds like you all have a good handle on the situation. I would say, even responsible adults need a helping hand and sometimes a bit of pressure to support them through doing the best thing in difficult medical times.

      Probably my medical situation is not near so rough as your daughter’s, but I see doctors and get nebulous, uncertain or unhelpful answers enough that I get feed-up and want to just stop dealing with it. Sometimes it seems better to deal with symptoms than to deal with doctors, particularly after a series of negative or uncertain tests, or getting your hopes up on some diagnoses that will be an easy fix, but doesn’t pan out, it can just seems pointless.

      I think a loved one (spouse, parent, friend) has to use some finesse and know when they can safely let the patient have a breather, or instead needs to tell them, “No, I know it’s hard, but really, I think you have to do this test (treatment, etc).”

      1. mousethatroared says:

        ^^^my above comment was directed to lorek.

  20. Joe S says:

    Excellent discussion; I’ve pondered the same points with ethicists and senior clinicians repeatedly as I’ve worked on formulating my own special little worldview. As a 4th year medical student, and in a few short months a real – eeek – doctor (or at least an intern, which is a doctor-like-object), the focus of medical education on patient autonomy and the ideal of informed consent has always struck me as being somewhat at odds with reality. While I absolutely agree that informed, rational patients would be fabulous, I think it’s a shame if we hide behind autonomy and incidentally abdicate responsibility. If the past few years have taught me anything, believe me, it’s humility! However, I don’t think it is incongruent to also say that for the majority of patients I see, if I don’t in fact have a pretty good idea of what they SHOULD be doing, my institution and the USMLE have a lot to answer for.

  21. Iorek says:

    Thanks for those thoughts and suggestions, and for the booklist. Some/all of those will be lying around the house during the long holidays just starting down here.

    I”m in the ‘getting old beats the alternative’ school of thinking despite all the lonely, unwell, unhappy older people in my world: I suppose some of the arrogance of youth clings well into middle age, as I assume I’ll never turn into them.

    My world also includes a lot of vaccine refusers, autism treaters and heavy metal chelators, and your work and contributions help me talk to them calmly and respectfully about their beliefs. Though I did lose the power of speech on hearing recently that the measles epidemic in Wales was not measles, but something else, with a conspiracy on foot between the vax manufacturers and the test manufacturers, designed to line both their pockets at the expense of the poor foolish public and UK government. As if life isn’t tricky enough without conspiracies to mastermind and keep secret…

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