Health decisions are not entirely based on evidence based data

“Science tells us nothing about the individual.”

So said Dr. Susan Pinker, psychologist and author. This perfectly articulated truth puts into perspective popular thinking: To make a decision, the most important thing is evidence-based information: all you need is science. To this I say, that’s a bunch of hooey. Science tells us nothing about the individual. Thank you Dr. Pinker.

Creating the expectation that health decisions are entirely based on evidence-based information diminishes completely the ordeal of the decision-making journey: frantic, frightening, fraught and oftimes the cause of additional upset when made final.

My own perception of why this equation of evidence-based information = easy-to-make decisions hooey is being propagated is partly that it supports the shifting of onus of responsibility and accountability from medical professionals to the patient (translation: fear of malpractice as much as fear of doing harm). This conveniently dovetails with modern day decision-making modus operandi – different than our parents largely as a result of the internet.

In fact, I’m given to understand informed patients are confident, engaged patients – discussing their options knowledgeably with their healthcare professionals. Being properly informed is empowering, and gives control. I don’t know anybody that fits this description, but from twitter and blogs, I know they’re out there. Be that as it may, none of this means decisions themselves are any easier. In health, especially, there are so many layers, factors, feelings, confusion and inner and outer conflicts that even with the ‘best’ science and information (whatever their definitions) decision-making can frustrate and confound decision-maker and community alike.

The following story of decision-making is not unique in its decision-related ups downs and all-arounds. And because it’s not unique, the experience flies in the face of pat and patronizing assumptions that all it takes to make a decision is a good science and a properly informed patient.

The decision in 11 chapters plus epilogue

Prologue

When the staff stopped cold and examined the mammogram in minute detail – leaving the rest of the women in the waiting room getting more and more agitated – she knew. In fact she’d expected it; with enough cancer in the family she felt a walking time bomb. After the biopsy, the type of cancer – explained in gentle, empathetic tones, “Ductal Carcinoma in Situ: DCIS. We’ll schedule lumpectomy as soon as possible.” Not knowing Latin, what she heard was: “It’s in my ducts. That’s equivalent to lymph nodes. In Situ must mean it’s situated everywhere in my body. I’m doomed.”

At home, in a daze, the phone rings. Her sister, married to a doctor, expresses unexpected relief: “This is great news: DCIS is the best kind of cancer. It’s only in the ducts, not the lymph nodes and in Situ means contained: it’s not spreading it’s not invasive.” She cries with relief and thanks her lucky stars for her sister and her medical interpreter.

Standard initial protocol: surgery. No further decisions needed on that one. Happily, day surgery removes everything that needs to be removed. Before leaving the hospital, she is told, “the incision will heal from the inside.” She had zero idea what that means or what importance it has. Over the next two weeks, she does her best to clean what looks like oozing from the incision. Her sister worries it’s an infection, and accompanies her to the follow up. Sister had allotted 3 hours for the appointment. When it takes longer, her sister corners the doctor, “My sister has an infection. She’s being very brave about it but it needs to be looked at.”

When the surgical resident finally sees her, she is reprimanded: “Tsk tsk. You’ve made the scarring worse. Weren’t you told the incision would heal from the inside out?” She feels too cowed to say: “I was told, but had no idea what that meant, and wasn’t feeling well enough to pursue it.” She also feels she has to apologize to the doctor for her sister’s outburst. Stress upon the stress of the follow up and reprimand. (She berates herself and all her relatives. Couldn’t my sister’s husband have explained the healing from inside out? Couldn’t I have asked him?)

Still feeling emotionally wrought, nonetheless, post-surgery treatment decisions loom. Radiation is the recommended course. She meets with the specialist – a woman she immediately likes – and thus begins the decision-making process.

Chapter 1: The decision

Specialist: Here are the percentages for recurrence with and without radiation. Here’s the website to look at when you go home. Only look at this section of the site – the rest of it doesn’t apply to you and will just scare you.

She: (Thinking: Terrific. I’m getting specific web direction) Thanks. I think from what you’ve toldme, I’m not going to proceed.

Chapter 2: Second guessing the decision

Specialist:Ok. I suggest you think about it further. I don’t want you to be a victim of survivor euphoria.

She: (Thinking: Survivor Euphoria? Did not like the sound of that at all – the way it was said, the implications, the tone) Thanks Doctor

At home, in consultation with husband, with a degree in Molecular Biology:

Husband: Your decision of course. The thing I worry about is what other tissue damage from the radiation.

Chapter 3: The decision: Confirmed

She: Right on. I’m not going to do it.

Chapter 4: The decision: Doubts are cast

Phone rings. Her sister. Her doctor husband is versed in statistical analysis.

Sis: I know that the statistics you were told about radiation. But, what sounds like a teeny percentage of difference is actually significant. I think you should consider radiation.

Colleague: (a nurse): Why wouldn’t you go for radiation? It’s just for 5 weeks.

Chapter 5: Serious doubts about the decision

She: (Tells husband she’s changed her mind — she worries will she hurt husband’s feelings for reneging on the decision made together.  No worries there: he’s with her whatever the decision.)

Chapter 6: Complete reversal of decision

Chapter 7: Treatment booked

Chapter 8: An unexpected decision.

She would not tell anyone else. She would not have to contend with anyone else’s decision-making input.

Time lapse from specialist visit = 48 hours. Emotional toll = aged in dog years.

With radiation booked, she want on a winter holiday. On the beach, she met a woman who’d had both breasts removed. The woman joked, humourlessly, about never drowning because her implants will keep her afloat and then reveals, without prompting, that she was cancer free for 17 years an then it came back with a vengeance. Radiation burned the heck out of her and left her exhausted.

Chapter 9: Emotional wreck. Questioning decisions.

She was a mess the rest of the vacation.(Agony over what awaited her. Did she make a wrong, stupid decision)

Not wanting to face the disappointment of those few who know, she proceeds with radiation. Five weeks of radiation begins. Every morning, at the hospital. She tells no one but her husband.

Chapter 10: Unexpected decision

She decides to use the treatment as a destination for a morning walk. By comparison with the months preceding it, radiation was a breeze, a learning and bonding experience. Wonderful technicians. No side effects. Almost makes her want to share this with others.

Chapter 11: A “feels right” decision

She will make herself available to other patients. Her doctor is very pleased with that decision.

Epilogue: Three empowered decisions

Empowered Decision 1: Not to view herself as a survivor, but as a healthy person – or, an otherwise health person, with a manageable health condition

Empowered Decision 2: Not to take any more drugs as a preventative measure

Empowered Decision 3: Produce a video, Understanding Radiation

Fast forward, 2010: Cancer free

Decisions made easy with the right information, you say? Hooey.

Kathy Kastner is Founder and President of Ability for Life.

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  • Healthcare Observer

    This is very entertaining but of course you’ve chosen a condition, DCIS, for which there is a great lack of evidence and controversy about diagnosis and on treatment decisions. But a lack of evidence does not mean you can’t practise good evidence-based medicine, which in this case could involve communicating the uncertainty properly, a mandatory second opinion, certified pathology etc, recognising that it is a combination of scientific and psycho-social factors. Evidence-based medicine isn’t just numbers on a chart.

  • Christie B

    Thank you for this post. I used to work in cancer research and am now pregnant and it is interesting to see how many of the difficulties inherent in making personal healthcare decisions are remarkably similar. I know I have been grateful for the ability to gather information and struggle through the decision-making process in all its complexity but I have had family members who were utterly overwhelmed and really suffered under the responsibility. I’d be interested in hearing more about how we can prepare people to have to make these decisions.

  • http://skeptvet.com/Blog SkeptVet

    What a depressingly cynical, and distorted view of evidence-based medicine. You have set yourself up uite a straw man to demolish, but you’d be hard pressed to find this cliche of blind, mechanical, and impersonal decision making in actual practice. A few points:

    1. Clinical and basic research may not tell us everything about the individual, but they do not tell us nothing. They tell us what is likely to happen given a set of conditions, and this kind of statistical evidence is a reliable guide to decision-making. The big casinos in Vegas may not know if any individual is going to win or lose, but they make a healthy living playing the odds, and people reliably and consitently suffer for imagining that as individuals the odds don’t have any relevance to their decisions.

    2. If we so thoroughly reject the very idea of science-based evidence informing our decisions, what do we replace it with? Clinical experience and intuition? Have we forgotten how poorly that served us through all the millenia before scientific medicine was discovered? Bloodletting sure looked like it worked!

    3. Why do you suppose using scientific evidence to inform us about the likely outcome and the value of various treatments must necessarily ignore any of the psychological factors involved in medical decision making? I know a lot of clinicians, and I don’t know any that are such robots that they behave as you suggest. Of course the values of a patient and their families are a key compnent in making medical decisions, but these values only come into play once the facts and options are known to them, and this is what evidence-based medicine does for us so much better than the opinion-based and faith-based alternatives.

  • http://doctorstevenpark.com Steven Park, MD

    Fresh out of residency, I did my best to read my journals and practice evidence based medicine. What I found over the years is that in general, it doesn’t help the patient in the long term. Yes, using evidence-based guidelines, I can treat an ear infection, but most of our studies are geared toward treating conditions, not patients. The patient’s ear infection may improve temporarily by following what the journal editors and researchers tell us to do, but the patients continue to get ear infections.

    What I began to practice many years ago is patient-based medicine, and I’ve never looked back. Every patient is a unique individual, and making a medical decision based on the law of averages may seem to help in the short term, but in the long-term, it only helps to perpetuate the underlying causes even further. Yes, it’s important to know about the studies, but there’s a disconnect between what researchers publish, and what actually happens in real life.

    Look at our criminal justice system. Our trials are based on the best evidence possible using the best scientific methods. But we still continue to convict and possibly even put to death innocent people.

    It’s difficult to describe what I’m talking about in this short space, but to give an example, take a look at an ear infection, or even breast cancer. Western medicine tends to treat these conditions in isolation, without addressing all the other aspects of the person’s life. This is where evidence-based medicine fails miserably. The complexities of human nature can never be explained by double-blinded randomized placebo-controlled studies looking at one particular gene or molecule

    If you look at medical dogma from 50 years ago, much of it has been debunked (admittedly a retrospective analysis). I’m willing to bet that in another 50 years, even the best evidence we have right now will be found just plain wrong. I’m confident that a prospective study will prove my point in 50 years.

    http://doctorstevenpark.com

  • mike

    Your flawed and emotional arguments represent perhaps one of the greatest barriers to improving health care in this country….arrogant physcians who will ignore medical best practice…and substitue “judgement”.

    There are scientific reasons why outcomes differ from one physcian to the next. Ignoring the science costs money and sometimes lives.

    And as mentioned earlier, using best practice and scientific evidence as the basis for treatment, does not preclude explaining the treatment and the reasoning behind it. Stick with writing novels and other hooey.

  • http://blog.krames.com Bob Abrahamson

    When push comes to shove, people will acti as if evidence-based medicine makes sense for the other guy. But for me and my family, I want unfettered access, as I so choose, to all the tests, procedures, medications, interventions, etc. This should not be unexpected or condemned. Self-interest motivates all individuals. Yet, because we are social animals and gather into groups, from which we certainly yield benefits that would not be available to us as individuals, there has to be some rules of engagement; an understanding of how the community as a whole can benefit in utilizing limited resources. In regards to medical decisions, it makes sense that the evidence-base be given a significant amount of weight. My personal preferences may dictate that I discount the evidence, and I should be allowed to do so, but I’m also going to have to pay to follow that course of action. As long as I’m a part of a community, that seems fair. Decision making is hard and personal preferences and needs cannot be ignored but neither can the medical evidence.

    • Healthcare Observer

      Bob,

      ‘I’m also going to have to pay to follow that course of action.’

      Are you very wealthy? Of course then you can buy almost anything. But what’s bringing American healthcare to its knees is the huge amount of unnecessary ‘care’ and perverse incentives to pay for expensive equipment. It is in your own ‘self interest’ and those of others like you to rein in your ‘right’ to ‘unfettered access’, as all you’re doing is pushing up costs and denying others access to those less fortunate.

      • http://blog.krames.com Bob Abrahamson

        Healthcare Observer,

        You misread what I wrote. Or I wasn’t clear (probably the latter). I think we are saying the same thing. You can’t always get what you want because we, as a society, can’t afford it. We need to rely on evidence where it exists to figure out what society can and should pay for and what the individual is going to have to cover. I’m saying that my self-interest SHOULD NOT BE ALLOWED to drive up costs. No unfettered access unless I can pay for it (which – unfortunately – I cannot but that is a different story.). To be clear, I’m saying we need to look at the evidence and weigh it heavily.

        Thanks,

        Bob

  • http://www.ability4life.com kathy kastner

    Thank you Christie B. You get it.
    Mike: To clarify: It was not I who wrote, who wrote: ‘Science tells us nothing about the individual’ It was a trained healthcare professional: Dr Susan Pinker. I am merely someone who collects, and shares experiences.
    The attitude of you and SkeptVet exemplifies to me that lack of appreciation of the shattered human being who’s been dropped into a new and devastating world. If you find this experience depressing, and arguments emotional and flawed …..imagine how the patient felt. Thanks to Healthcare Observer: the very fact that there’s controversy over DCIS treatment and diagnosis points to scientists/researchers/clinicians questioning treatment. And they HAVE the training. I’m glad that responses from most doctors has been: ‘too true. statistics are just that.’ and ‘where can I get Dr Pinker’s book.’
    ps: Mike: would love to see the evidence that says arrogant physicians, who substitute judgement for best practice are a barrier to improving healthcare.

    • Healthcare Observer

      ‘If you find this experience depressing, and arguments emotional and flawed …..imagine how the patient felt.’

      i think you missed the point, which is that what you are ‘sharing’ is a failure of the healthcare system, not so much evidence-based medicine, which is promoted by say having a multidisciplinary oncology team and not the fragmentation and greed so common in American healthcare.

      ‘the very fact that there’s controversy over DCIS treatment and diagnosis points to scientists/researchers/clinicians questioning treatment. And they HAVE the training.’

      DCIS was rare until we had increasingly detailed mammography – like PSA prostate screening, it has created a vast number of often unnecessary interventions. The research is ongoing about trying to differentiate cases that will progress. The point is that a few years many women were offered mastectomy. Now there are less destructive treatments or maybe no treatment – and only an evidence-based approach, based on current evidence from a multidisciplinary team, offers the best way forward to minimise stress in decision making.

      • http://www.ability4life.com kathy kastner

        The DCIS experience reported in my post was Canadian. And, I’m not dissing evidence-based medicine, or calling it a failure at all. What I take exception to is your observation that “based on current evidence from a multidisciplinary team, offers the best way forward to minimise stress in decision making.” Why? Because the multi-disciplines can each have their own interpretation from evidence related to their discipline, and evidence doesn’t automatically mean minimized stress in decision-making.( I’m talking about patients decision-making, not hcp) Where the subject of my story (eventually, and not without much to-ing and fro-ing) decided not to take Tamoxifin (despite the evidence) for another woman – also with DCIS – Tamoxifim was a must.

  • http://skeptvet.com/Blog SkeptVet

    “Western medicine tends to treat these conditions in isolation, without addressing all the other aspects of the person’s life. This is where evidence-based medicine fails miserably. ”

    This is the kind of nonsense used to justify faith-based medical practices with a long history of failure. The very term “Western” medicine is a buzzword or postmodernism and the alternative medicine community meant to imply that science-based medicine is somehow limited to one cultural mileu. Guess what? Antibiotics work in every culture of he world, and homeopathy works in none. The physical world is what it is regardless of our beliefs about it, and science has proven it is best able to explain and manipulate physical reality.

    As for the cliche that “Western” medicine treats lesions and symptoms and the alternative approaches, whatever they may be, treat patients and causes is nonsense. Scientific medicine acknowledges and includes lifestyle, psychological needs, social support networks and all sorts of relevant contextual factors in its approach to patient care. I may have gone to the doctor for my elevated cholesterol, but in addition to counselling me on diet and exercise for that, she reminded me to wear my seatbelt and use sunscreen and inquired about my family life and general wellbeing. And when we wiped out polio and dramatically reduced mortality associated with delivery, we were treating causes not symptoms.

    Granted the healthcare delivery system in America fails on many levels, including sometimes depersonalizing patients, but this is a failure of the economic system in which science-based medicine is embedded, not the paradigm of evidence-based healthcare.

    I still haven’t heard from those who want to jettison evidence-based medicine exactly how they intend to avoid sliding back into the millenia of ignorance and failed ideas that constituted healthcare before scientific medicine arose to double our life expectancy and wipe out diseases that had been with us for all of recorded history. Only the dramatic successes of scientific medicine in the last two hundred years could make it possible for doctors today to forget how pitifully unreliably our clinical experience, intuitions, and reliance on mentors to learn the “art” of medicine used to be. Yes patients are individuals, but they are also human beings, and we are all much more alike than we are different in our bodies and the causes of our good health, disease, and psychological well-being or unhappiness. Studying health scientifically not only diminishes the devestating impact of innumerable personal biases out of our judgements, it acknowledges and makes use of the fundamentally commonalities of all human beings. Are we really such snowflakes with nothing in common that we must reinvent all of medical science for each one of us individually? Who could take such a contention seriously?

  • Mike

    The failure to use “evidence based medicine” is primarily a failure in the US, and has helped drive the cost of health care in the U.S to the number 1 spot in the world. While we still trail many nations in infant mortality and in longevity. These facts are pretty much irrefutable.

    Kathy, to help you better understand the benefits of Evidence Based health care, please take a look at the record of Parkland Hospital’s (Dallas) maternity care. The program is driven by “scientific evidence” but to make it simpler…we should just say that it is driven by what really works. Parkland’s typical maternity case is an “illegal alien”, by definition poor, with no access to health insurance. Parkland’s record is a shining star for the entire country. They have the lowest cost per delivery, and they have vastly better outcomes than most of the hospitals in the United States. These are scientific facts..not based on someone’s feelings. Please take the time to look at Parland’s results…and their process…and then lets discuss what really works…vs. what people have been “brain washed” to believe.

  • http://doctorstevenpark.com Steven Park. MD

    Mike,

    I didn’t say that I abandoned evidence-based medicine altogether. Patient based medicine incorporates evidence based medicine and best practice guidelines. But when doctors continue to give antibiotics for ear pain or a sore throat when it’s really due to reflux or TMJ, that’s not practicing evidence based medicine. If you’re convinced that most medical problems are due to an invasive organism, or a defective gene, then you’re more likely to prescribe an antibiotic or order a test to look for a deficiency.

    For many people, changing a few simple lifestyle factors and eating habits help more than most of the medications that are routinely prescribed. This can only happen if you spend the time find out what’s happening in the patient’s life, rather than focusing in on the symptoms only.

    For example, I see young women who come to see me for let’s say 4 weeks of sinus pain and headaches, nasal congestion, throat pain and fatigue. Antibiotics by the PCP for sinusitis doesn’t help. Despite the evidence that most sinus headaches are not infections but migraines, patients are almost routinely given antibiotics. Usually, after some digging, it turns out that the patient normally eats close to bedtime. She also is normally a stomach sleeper, but changed to her back after reading in a magazine where a dermatologist recommended avoiding stomach sleeping due to an increased chance of wrinkles. Not too surprisingly, the sleep position was changed about 5 weeks prior.

    Just by having her eat much earlier and having her go back to sleeping on her stomach usually improves symptoms in well over 90% of these patients. This is one of many examples where you combine evidence based medicine and spending the time to do some historical detective work that helps people to breathe and sleep much better, alleviating many chronic medical problems in today’s society.

  • Mike

    Here are some links for those of you who would like to how evidence based practices work @ Parkland Hospital…I hope you find them educational….as they are largely statistical in nature and not based on feeling / opinion….but on real world results. The first article is from a leading business magazine called FastCompany.

    http://www.fastcompany.com/magazine/63/parkland.html?page=0%2C1

    http://www.dallasnews.com/sharedcontent/dws/news/localnews/stories/022809dnmetbabies.3d93f9f.html

    Maybe after you’ve looked at these, Kathy, we can have a more discussion.

    • http://www.ability4life.com kathy kastner

      Thanks for both links (always enjoy Fast Company). Parkland: fantastic. Would that all hospitals were as organized around and dedicated to their patient population needs. However I read that it’s more the superb system that’s evidence-based, and that birthing (which can sometimes have disastrous results but) is generally a (relatively) brief period, and those hours of pain are towards something joyous: a new life. I hold to what I wrote: It’s the perception that, when the evidence is provided, decisions are more easily made. I say evidence does NOT an easier decision make– I’m talking patient decisions here, not hcp decisions.
      To quote the docs at Parkland “Leveno and Sibley’s insistence that “We don’t take care of 16,000 women. We take care of one woman at a time.” Yes (presumably) they use evidence-based practice AND they understand and care for us as individuals.

      • Healthcare Observer

        ‘It’s the perception that, when the evidence is provided, decisions are more easily made. I say evidence does NOT an easier decision make– I’m talking patient decisions here, not hcp decisions.’

        Ah, but you missed out the word ‘correct’ – when the evidence is provided, correct decisions are more easily made. And again, the key point some of us have been stressing is that yes, there are complex and uncertain conditions and situations, but evidence is just as much about integrating social science research to help patient decision making as it is about medical science.

        • http://www.ability4life.com kathy kastner

          ‘Correct’ you say, is the word missing. What happens when scientists disagree on what ‘correct’ is. What happens when the patient’s allegedly ‘correct’ decision turns out not to be correct. As for your ‘key point that some of us have been making’ sure sounds like ‘us’ are hcp. I’m frankly amazed at the degree of push-back my patients-view has incurred. I seem the only ‘patient’s voice’ here. Aren’t patients supposed to be the center of patient centered care? Why not take note towards that patient centered goal. To repeat: I’m not arguing the importance or necessity of evidence, I’m lobbying for an understanding of and helping to take care of the emotions, self-doubts, conflicting input (from families and well as hcps) Perhaps you who are so certain that all you need is the correct evidence might better listen to your patients – or ask ‘em what’s been going on between appointments when they go through their decision-making process. As for evidence integrating social science: glad you know of hcps who do that. They should be the models.

          • Healthcare Observer

            ‘What I take exception to is your observation that “based on current evidence from a multidisciplinary team, offers the best way forward to minimise stress in decision making.” Why?’

            I’ve spent a lot of time interviewing doctors, nurses and others in cancer units, mainly around Europe. One thing many of them strive for – although it’s very hard to do perfectly without unlimited resources – is a true multidisciplinary approach. At a medical level this means a tumour board, where the specialisms (eg medical oncologist, surgeon, radiation oncologist) actually discuss and come to a consensus on the best approach. This sounds obvious but doesn’t happen nearly as much as it should. For example, far too many women are still scheduled for mastectomy rather than conserving operations by surgeons acting more or less alone.

            The other aspect is the wider team and organisation of care, involving oncology nurses, psycho-oncologists, dieticians, dentists, physiotherapists, advocacy groups and so on, as well as the senior medical staff. Increasingly some of these are also involved at tumour board level. But the key is, as you say, a patient centred approach that engages consistently throughout a patient’s cancer journey, and this involves a lot of research, eg in psycho-oncology (pioneered at Sloane-Kettering), itself an interdisciplinary practice, and in nursing oncology, where research shows that nurses are often better at treating patients according to protocols and are at the same time closer to them.

            Getting and applying evidence on how to do all this is critical.

            ‘‘Correct’ you say, is the word missing. What happens when scientists disagree on what ‘correct’ is. What happens when the patient’s allegedly ‘correct’ decision turns out not to be correct. ‘

            All I’m saying is that you are more likely to get better outcomes and experience by correctly applying the correct evidence as I’ve outlined above.

            ‘As for your ‘key point that some of us have been making’ sure sounds like ‘us’ are hcp. I’m frankly amazed at the degree of push-back my patients-view has incurred. I seem the only ‘patient’s voice’ here.’

            No – the whole point about disciplines such as psycho-oncology is to ensure the patient’s voice is very much heard. But it’s taken a lot of pushing to get the evidence for its effectiveness accepted by the powers that be.

  • http://www.ability4life.com kathy kastner

    Mike: thanks much for links. Will get to ‘em and comment.
    SkeptVet: taking note your continued efforts to make me see the light ;)
    It’s interesting to me that I’ve gotten positive, happened-to me comments from patients (original posting on my siteww.ability4life.com, and reposting on sharingstrength.com – for cancer patients) who react and relate not to my incendiary remarks about evidence (which, btw, being a member of Society of Teachers of Family Medicine, I do absolutely believe is a critical – nay, necessary – component in decision-making from the MD’s pov) but the assumption that we are equipped to understand sufficiently to make informed decisions. I think that Steve Parks MD – you articulate one of the missing elements ‘spending the time to do some historical detective work’. Is that a system error? The individual MD’s decision?
    Back to my beef about evidence: I’ve now heard of so many sad examples of how the evidence, that’s supposed to give some assurances, didn’t work – or, as in the case of the scenario in my post, felt ‘guilted’ into doing something.. ’cause ‘that’s what the evidence said’ I hope the future holds something in the middle – including the acknowledgement that ‘this is the best we have right now’ or as in the case of DCIS – still working on it. Last point, re lumpectomy vs radical mastectomy. Yes. Hurray for that advancement (although many women seem to opt for double mastectomy… despite the evidence..)

  • Mike

    “Science tells us nothing about the individual?” I guess I can toss my anatomy books out the window…all that work for nothing. Only joking Kathy as I reread your piece.

  • http://www.ability4life.com kathy kastner

    Mike! You reread my piece! Terrific! I hope your second time showed more than (the perception) that I am dissing evidence. The greater message was about (patients) not properly understanding, interpreting or knowing what to make of the evidence (the evidence in this case showed what seemed to be an inconsequential impact on outcome wit radiation; when it was the exact opposite) and distress caused by (mis) interpretation of DCIS. So appreciate you taking the time to re-read. Keep them Anatomy books please.

  • Mike

    As a matter of fact, Kathy….

    I was thinking about your piece as I drove home today. Here’s what occurred to me……MD’s, Mechanics, Computer Tech’s, you pick it….can be less than sympathetic to their cutomer’s feelings. In fact, they can be downright insensitive if that is the way the choose to act. This doesn’t have anything to do with Evidence-Based….it does have to do with being insensitive.

    Personally, I like statistics….I like being able to ask “what are my Father’s chances” if we use this protocal vs. that protocal”. I think that “evidence-based” was at the heart of Florence Nightingale’s work in developing “charting” of patient conditions. Most physicians hate these questions…..because it calls into question their personal judgement. When a Doc makes a recommendation, I want to know the honest basis of that recommendation.

    Let me give you a really personal and absolutely true example. My Father was in the hospital diagnosed with Bone Cancer. In addition to this…he had already had a massive stroke 12 years before…and was barely able to walk. His speech was poor…but he had continue to fight on for 12 years after the stroke.

    In the hospital, Dad began to suffer from fluid build up in his lungs. My Dad’s MD came forward and suggested a surgery to eliminate the fluid build up (the build up would surely kill Dad).

    I asked the Doctor how long my father might live if he had the surgery. Answer…maybe 6 months. OK, next question “will my father ever leave this hospital if he has the surgery…..answer….that is unclear.

    My mother and sister have tears streaming down their faces…when I say “no surgery”. The Doc, says but he’ll die without it….my answer….”he’ll die with it too. The question is only how long he will have to suffer.” I then get the last question; which is directed more toward my Mother and Sister….”Are you sure, you don’t want him to have the surgery?” We agreed that we were sure…and requested that Dad be provided with the maximum comfort possible. That’s one story…but I have seen more and worse.

    In Europe, from what I have read, before performing a these sort of procedures, they ask questions such as “will this lengthen and improve quality of life. If they don’t get the right answer there….then the decision is made. And it is “evidence / statistically based”. I much prefer this to a system which pushes hard decisions down on the family, and rewards the physcian, hospital and others…..for performing a procedure…which not only does not have a good probability of producing a better outcome….but may instead, increase patient sufferring.

    One last thing; my father died less than 2 hours after I said “no” to the surgery.

    Physicans have an obligation to fully explain the science / reasoning behind their decisions. If they won’t, can’t or don’t….shame on them.

    On the other hand, I believe that customers (patients) and their families have the full right to the evidence. And it should be communicated in no uncertain terms.

    In the case of someone has a “headache”, I think that is a different from the one in your article which is a life threatening cancer, heart attack, brain tumor etc.

    Finally, I believe that all things being equal, well informed (Evidence Based) decisions have a lot better chance of success in improving quality of life and longevity…than any other approach. To deny this is to basically refutiate science and the progress that has been made in medicine for last several hundred years.

    Ignoring the importance of scientifically gathered data is a bad choice that could lead us back to the days of the Witch Doctor and the Medicine Man. There is a difference between being rude, insensitive, and arrogant…..and using science as the basis of decision. The two should not be confused.

    Thanks for your kind attention and the use of the Hall.

    mike

  • http://www.ability4life.com kathy kastner

    Oh Mike. What a time with your father and your family. My heart goes out to you.
    I so appreciate you being thoughtful and reflective – about my story. (When I re-read it, I could see where my first paragraph should’ve/could’ve be clearer about my support of and need for using evidence-based science – and that that’s not my bone to pick)
    I believe you’re right about insensitivity (and yes, it hurts in any communication situation) I wonder if in many instances its more borne of being thoughtless. e.g I think with DCIS, being a common enough term within the specialty, the diagnoser just didn’t think of the need to explaining/translating . And/or even if it was properly explained, it certainly wasn’t properly heard (I’ve been in that very situation with any computer related fix). I also think med school/specialty requires learning a new language, and it’s the language hcp use to communicate with one another.
    I found (what I thought was a) lovely and telling story in the STFM journal, of a doc learning his patients language: It’s called, Appalachia, by Dr Josh Carter, from University of Kentucky, here’s but an excerpt:
    “For the last 3 years of medical school, I have had new words infecting my head like an uncontrolled spread of meningococci. Somehow, I have already forgotten that most people do not know these words and that my communication with them can therefore be quite limited. I found that I stopped getting quizzical looks when I changed “diabetes” to “the sugar” and when I swapped “diuretic” for “a water pill.” When a patient looked “lower than a snake’s belly,” it helped to tell them so, and when a patient said their ankle was “rurnt,” they really meant it.”

  • http://evimedgroup.blogspot.com Marya Zilberberg

    EBP is supposed to be “conscientious, explicit and judicious” use of evidence, but also integrated with the clinician’s expertise. Later on the patient’s values were added. I think that the preamble to this post is exactly on target, that each individual patient is a universe onto herself, and is difficult to cram into a risk distribution.

  • Mike

    Marya….
    I don’t agree that all people are different. Don’t you think that at least most people want to be treated with respect and dignity? The concept that “we are all different” and that “Science tells us nothing about the individual.” Holds us back from making informed decisions. Better informed individuals will make better informed decisions than uninformed individuals. The continued believe that medical information is a “voodoo” rather than a science….will continue to create more bad decisions. Finally, evidence based medicine does not have to be calloused, cold, or rude in any way. You know…now that I think about it…how much training do MD’s actually get in human relations??? Maybe here in lies the real prob.

    All the best to you and your family.

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