Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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What happens when patients know more than their doctors?

Discussion in 'Other Health News and Research' started by Kati, Feb 20, 2017.

  1. Kati

    Kati Patient in training

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    What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study

    http://bmjopen.bmj.com/content/3/11/e003583

    Abstract
    Objective To explore the impact of patient education on the lives of people with diabetes, including the effect on interactions with doctors and other healthcare professionals.

    Design Qualitative user-led study using longitudinal interviews and 146 h of participant observation. Data were analysed using a narrative approach.

    Participants 21 patients with type 1 diabetes, those either about to attend a patient education course or those who had completed the course in the previous 10 years.

    Setting Established patient education centres in three UK teaching hospitals teaching the Dose Adjustment for Normal Eating (DAFNE) course.

    Results Both postcourse and several years later, most participants spoke of the experience of taking part in education as life-changingly positive. It helped them understand how to gain control over a very complex disease and freed them from dependence on medical advice and restrictive regimes. However, interactions within the health system following patient education could be fraught. Participants emerged from the course with greater condition-specific knowledge than many of the healthcare professionals they encountered. When these professionals did not understand what their patients were trying to do and were uncomfortable trusting their expertise, there could be serious consequences for these patients' ability to continue effective self-management.

    Conclusions Patients who have in-depth knowledge of their condition encounter problems when their expertise is seen as inappropriate in standard healthcare interactions, and expertise taught to patients in one branch of medicine can be considered non-compliant by those who are not specialists in that field. Although patient education can give people confidence in their own self-management skills, it cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully. There is a role for those involved in primary and hospital care, including those supporting and training healthcare professionals, to recognise these problems and find ways to acknowledge and respect chronic patients' biomedical and practical expertise.

    P.S. i found this on Twitter, a renown canadian journalist had shared it, and
    I thought it was worthy of sharing. This is not a new paper, it's from 2013, but oh so relevant for our disease
     
    Last edited: Feb 21, 2017
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  2. hixxy

    hixxy Senior Member

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    That whole conclusion is so true in my experience.
     
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  3. A.B.

    A.B. Senior Member

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    Great article.
     
  4. chipmunk1

    chipmunk1 Senior Member

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    The patient gets diagnosed with 'health anxiety' :)
     
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  5. undiagnosed

    undiagnosed Senior Member

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    The unfortunate reality is that we have an authoritarian medical system. The only existing safeguard is that a patient can seek multiple opinions. However, that breaks down when there is systemic bias across providers. Most of the time for a particular disease diagnosis, a common algorithm is followed irrespective of provider. When the algorithm is flawed it doesn't matter how many different providers are seen, the diagnosis will always be incorrect. A patient with an extensively researched hypothesis represents a diverse algorithm which could solve the problem. However, since the patient is overruled by the doctor it doesn't matter if they have the correct diagnosis. There has to be a way for patients to access the diagnostic tools necessary to support or falsify their hypothesis irrespective of a doctor's opinion.
     
  6. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    this is the very history of my life, when you get to know more than doctors, they cease to be of help an instead become an OBSTACLE, and a very difficult one
     
  7. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    well said!
     
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  8. Old Bones

    Old Bones Senior Member

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    From the article posted by @Kati: " patient education . . . cannot solve the power imbalance that remains when a generalist healthcare professional, however well meaning, blocks access to medication and supplies needed to manage chronic diseases successfully."

    Unfortunately, it is not only the power imbalance between healthcare professionals and patients that limits a patient's ability to manage their chronic disease(s) successfully. The medical system in which mainstream practitioners work is also a major factor, by controlling the diagnostics and treatments approved and available. Currently, this is my biggest frustration. My doctors are willing, but are hamstrung by the system. I've lost count of the number of times I've been told: "I'm sorry, I can't order that diagnostic test for you."
     
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  9. undiagnosed

    undiagnosed Senior Member

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    @Old Bones, it's interesting that you have doctors willing to order tests. In my experience doctors follow the Samuel Shem quote, "The delivery of good medical care is to do as much nothing as possible". The philosophy is basically to do the minimal amount of investigation possible and send you on your way. So it's that they're unwilling rather than unable.
     
    Last edited: Feb 20, 2017
  10. barbc56

    barbc56 Senior Member

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    I have said this so mant times. IF this was depression, IF this were only anxiety, I would have no problem with fixing that as I want to get better! I have had depression since before getting sick, fortunately, resolved for over 20 years. There's a big difference and believe me I keep on top of it! Situational anxiety and depression can arise from this DD but it's qualitatively different.

    I have been very, very, very , fortunate in that I've only encountered this a couple of times in my life. Interestingly, it most of the time it was before I got sick. It was my psychiatrist who discovered my thyroid was low when I first saw him. He recommended a short term nurse/therapist who dealt with patients who have chronic illness and it was so helpful. Never once did I hear it was in my head. Yeah, there have been times I've needed a bit of motivation to get going.. But thats a human condition and not specific to any illness!

    I just wish that everyone else had the same care. That's not to say I won't encounter these type of situations in the future.

    It's a shame people have to experience these situations. Actually, more than a shame. Having to worry about your health care would just add fuel to the fire and cause much unwanted stress that could do one in.

    I'm not anti doctor/science and sometimes it's a matter of a doctor's ignorance about our conditions. That's certainly only one part of any solution but it's definitely a big factor.
     
    Last edited: Feb 20, 2017
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  11. Kati

    Kati Patient in training

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    This paper pertains to diabetes, a well understood, well funded and well addressed disease that offers many, many treatments. The level of stigma and contempt in health care is yet another layer that adds to the compexity of where we are at in 2017 with this disease (ME that is)
     
    Last edited: Feb 21, 2017
  12. JamBob

    JamBob Senior Member

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    I have read this paper before and as someone with IDDM I think it conveys the issues nicely. I usually just have to humour GPs and hospital doctors when it comes to diabetes as their conceptualisation is too simple and doesn't seem to correspond with the daily realities of managing insulin. For example doctors (when taking notes) always demand to know (for their notes) how much insulin I take per day. When I tell them that each shot is a different amount - they literally can't "compute" and keep demanding to know what my daily insulin dose is. I'd like to say to them "does your body make the same amount of insulin for every different meal you eat each day?" but I have to hold my tongue. I think the fault is in the education and training of doctors these days that assumes there is a simple algorithm or protocol for everything.

    I agree with @Kati that diabetes is well funded and well understood yet as advanced as diabetes understanding is, clinics are still problematic for patients. ME is in a much worse position.

    The one great thing about diabetes (compared to other diseases) is that the treatment is literally in the patients' hands. As a patient you make all the decisions about your dosages and it is within your power (to a certain degree) to treat yourself and almost eradicate the symptoms. In many ways doctors are irrelevant to diabetes - except for the prescription writing - there is little they can do but as a patient there is everything you can do to keep yourself alive. Even though diabetes has all these deathly complications like amputations and blindness, I'd much rather have diabetes (that I can have an impact on myself) then ME (where I feel helpless to fix the problem without doctors' input).
     
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  13. kangaSue

    kangaSue Senior Member

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    The usual bullshit, you get referred to a psychobabbler.
     
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  14. Valentijn

    Valentijn The Diabolic Logic

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    This is rather accurate. My GP thinks that testing my blood sugar even daily (with newly diagnosed diabetes mellitus and on hypoglycemia-inducing meds) means I have health anxiety, or that testing will cause anxiety. If I have symptoms while hyperglycemic, she attributes it to health anxiety. If I have symptoms from a "false hypo", that must also be health anxiety. If I have ketones in my urine while hyperglycemic and symptomatic, the associated symptoms of mild-moderate diabetic ketoacidosis must be due to anxiety. And metformin can't possibly cause symptoms of lactic acidosis (despite being listed on the bloody insert), so that must be more anxiety :rolleyes:

    I've said repeatedly that the symptoms start, then I test, and the numbers usually explain the symptoms. Just like when we first tested at home on my fiance's old glucose meter after I'd been sick for several weeks following a virus, and blood glucose was 22.2 (400). But in her mind, having symptoms or the act of testing my blood sugar or ketone levels must indicate anxiety.

    I have no doubt that ignorance is a huge contributor to her false beliefs regarding my anxiety, and ironically that ignorance is the primary cause of any actual anxiety I have. She has said some of the stupidest things, in the process of trying to make me less "anxious", which has consequently had the effect of undermining my confidence in her abilities as a doctor, or as an intelligent and honest human being for that manner :p

    The problem isn't just ME. The problem is GP's being confronted with health issues of which they have no understanding.
     
    Last edited: Feb 21, 2017
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  15. Hip

    Hip Senior Member

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    One solution to this issue might be to have two groups of doctors: one group of doctors which are trained to work with the subset of the population which pro-actively medically educates themselves — the patients which commit a lot of time and effort into finding the best solutions for themselves; then another separate group of doctors would deal with the subset of the population that takes little or no personal research interest in their own health, and just expects the doctor to do all the work and make all the decisions.

    I generally find that patients fall in to one of these two groups: the pro-active group, and the group that has not much interest in researching their health issues.

    If you think about it, these are very different approaches, because in the patients that have no interest in researching their illness probably expect and prefer to deal with a confident and authoritative (but not authoritarian) doctor (because the doctor's confidence then makes the patient feel he or she is in good hands), and a doctor who guides the patient into the recommended treatment.

    Whereas the pro-active group don't particularly want a doctor to make authoritative statements or guide the patient into a specific treatment; rather, they would like a more collaborative approach with the doctor, where different treatment ideas are examined and discussed, with pros and cons weighed out, with the patient perhaps bringing to the table some new treatment possibilities the doctor may not be very familiar with, but is happy to look into.
     
    Last edited: Feb 22, 2017
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  16. lauluce

    lauluce as long as you manage to stay alive, there's hope

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    argentina
    excelent! but also makes me think... what if the patients are responsible for the doctors unwillingness to listen to their research and knowledge? if every patient on earth will educate itself and demand the very best effort from its doctor, would we be having this issue? we, patients of ME, LYME, ebola, common cold, should unite
     
  17. Kati

    Kati Patient in training

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    I think in this case, the establishement is like a big wall. They as a professon refuse to consider they have been wrong, and misled for 3 long decades. Maintaining the wall may well be easier than admitting they made a big mistake.
     
  18. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    You get told "Those are awfully big words." True story: I mentioned the phrase "myalgic encephalomyelitis" while speaking to a neurologist and that was their response.
     
    Last edited: Feb 22, 2017
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  19. kangaSue

    kangaSue Senior Member

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    Jennifer J and Joh like this.
  20. Snow Leopard

    Snow Leopard Hibernating

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    Did you tell them that condescending is a big word too? :whistle:

    Perhaps they need to be asked: what is the evidence base for the benefit/harms for using condescending language in medical practise?
     

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