Where Does The Patient’s Responsibility For Their Health Begin? Do We Know?

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When you or I visit an accountant, a lawyer or car mechanic, we know what our role is and have a pretty clear understanding of what the ” expert” is supposed to do. But when it comes to a trip to the doctor these days the roles and responsibilities of patients and physicians have become blurred and unpredictable…and the patient seems to generally be on the losing end.

Own ResuceTake my Mom’s case. My Mom who was 89 years old and evidently had severe osteoarthritis. She never knew that even though she was been seen every couple of months by her Internist for years and years. It’s too bad…because my Mom died last week from complications due to a compressed fracture of her spine. Turns out her spine was very fragile according to her consulting Neurosurgeon but no one ever told her.

The first question that entered my mind when I heard of her condition was why didn’t her primary care physician “pick up” on the severity of her condition before she fell and fractured her spine?

From my perspective, my Mom’s primary care physician should have told/warned her as to the severity of her condition. As it was, she was never prescribed any medications or dietary supplements nor was she advised of the benefits of staying active.

My wife says my Mom should have been aware of the fact that older women routinely experience bone loss. After all, there are ads everywhere warning of the perils of osteoporosis and the benefits of staying active.

So how are patients supposed to know what they are supposed to know?

Is it common practice for physicians to assume their patients have a certain level of health knowledge? If so, is there a difference between expecting patients to understand the perils of smoking versus the perils of bone loss? I was not aware that compression fractures of the spine were so common among women with osteoarthritis. I bet most non-physicians aren’t aware of this fact either.

Where is the dividing line between what patients are supposed to know versus what physicians have an obligation to tell them?

I am all for have people take more responsibility for their health. I understand that physicians can not possibly handle the competing demands they face and that patients have to do more. The problem is that it seems that someone should tell the patient!! If physicians expect patients to take on more responsiblity for their health then why not explain that to patients? But simply telling patients they have to do more is not enough…patients need to be taught what they need to know and what they need to do.

This problem seems to be particularly acute for the elderly. Having grown up before the age of patient empowerment, they generally do what they are told by their physician. If something is important, they believe that their physician will tell them. Unfortunately the rules have changed and I fear that patients are the last to figure it out…often when it’s too late.

Going forward I hope doctors and patients start having frank, honest discussions about expectations and responsibilities. Yes it may take a minute or two…but in the long run it should save lots of time, pain…and yes even prevent accidental falls and untimely deaths.

That’s what I think. Please share your thoughts and experiences…don’t be afraid to disagree.

9 Comments

  1. The disconnect between FP/GP/IM providers and patient education is well known. Many, add specialists, will confess that they see their patients only once per 60 to 180 days for followup. As well, far too many place patient education low on the scale of medical management and utilize low impact, methods to educate that do not tax practice resources. I once had the head of a prominent cardiology group state that he and his providers only see patients for followup once every 6 + months and that he has no idea if his patients effectively self-manage during the interim.
    From the physician’s perspective medical management is the primary, if not total, treatment protocol. With few exceptions, education and patient self-management are seldom held in the same regard. Over the last decade or so advances in data collection and analysis has improved markedly. We now have the evidence to design and fund efforts needed to curb the escalating morbidity that we knew was creeping up not so slowly from behind. As a result, the mindset of medical management leadership has recognized and advanced patient self-management (via improved education and monitoring) as a key aspect of patient outcomes and lower costs of care. That is, provider-centric care (aka “patient-centric”) has begun to turn, with the proverbial speed of a battleship, to a new paradigm of “peer-centric” care heavily integrating the patient as a ‘partner’ within the caregiver team thereby sharing the vision, planning, execution, and responsibility of the treatment plan. This is much easier to recognize with select high cost diseases such as diabetes and heart disease where Medicare has set aside funding specifically for patient education to improve self-management. They have the first step right with DSME…now how do they address the need for continuity of knowledge maintenance over the life of the patient?
    For the practice based provider the problem is resource centric. It’s simply that patient education doesn’t pay. In fact, it costs…considerably. In the time that a provider takes to thoroughly and adequately educate a patient in the office, a provider could easily see 2 or 3 more patients and bill for treatment. The Medicare argument is that patient education is a part of the office visit mix. The reality is that it is not required to bill. Patient education also requires that the provider dedicate more expensive resources towards the effort, like nurses, printed media, videos, displays, etc. Any followup contact to limit the degradation in patient self-management knowledge that commonly begins after 90 days requires a redoubling of those efforts and costs. Overall, a perceived “lose-lose” situation for a provider.
    Of course, there is always the reportable patient self-management and education requirements mandated by Meaningful Use. Money promised if certain criteria is met, and reported. The reality is that the requirements to educate patient effectively for self management has been dumbed down to a level where any rudimentary effort to give a patient educational information will suffice. I suspect we will not see any notable change in outcomes related to MU requirements of patient education and self-management with current requirements. This lackluster effort places almost no emphasis upon process change from the status quo for the office based practitioner. I recall one message to Dr. Blumenthal during the public comment phase that the, “technology didn’t exist” to achieve the (previous) patient self-management requirement at a reasonable cost. Simply untrue.
    The good news is that advancements in digital telehealth, telemedicine and mobile/cell technologies are driving real improvements in consumer health informatics, self management applications, and improving end user confidence in self management. HIT and related vehicles of delivery offer significant advances in data collection and analysis. The end result should be a much higher emphasis upon digital decision support solutions that drive best practices and consistency among highly effective care models. These technologies also provide new economies of scale to the intra and extra institutional provider, a key factor in adoption and long term value. Digital technology usually supplements a fair amount of human manual labor and materials costs. In the case of patient education, where resources are scarce and expensive, this is good news. The HealthyTutor.com application for instance, is a consumer health informatics solution that is totally web based. It’s fully automated and deeply educates. It provides immediate feedback to both patient and provider. It’s a data centric, decision support tool that analyzes compliance, cognitive deficit, and risk for poor outcomes. It operates easily across the continuum of patient care in all health industries. It can be integrated with the EHR/PHR. It’s low cost and available literally anywhere that a patient can access the web…and it exists today. Most significant is that it produces actionable, measurable, patient specific data that encourages long term behavior modification when used in concert with traditional medical management models. So in summary, the technology is available today. Adoption is the problem. Awareness, payment and provider incentives are the answer.

  2. Anne Polta says:

    I am so sorry for your loss.

    I agree 100 percent with what you have written. Patients are constantly being told to be informed and ask questions, but I’m not sure how they can be expected to do this when they perhaps don’t have the confidence or don’t know the right questions to ask. This is the piece that seems to be missing from the patient empowerment movement: Before you can behave in ways that are empowered, you have to feel empowered. Before you can feel empowered, you need skills and knowledge.

    I think it also makes a difference when clinicians welcome the patient’s questions and try to anticipate what the patient needs to know. There’s some interesting research on how the conversation can shut down when patients are interrupted or when their concerns are dismissed. The burden can’t be entirely on the patient. Clinicians are responsible too for creating an environment that fosters the exchange of information.

    Where should the dividing line be between what the patient is expected to know vs. what the doctor has an obligation to spell out? I’m not sure, but I would submit that the bar needs to be set as low as possible. I don’t think anyone can ever make assumptions about what the patient knows, because if you misjudge, it could have terrible consequences.

    • Anne,

      Thanks for your thoughts. As usual, your insights are right on the money. The simple act of physicians inviting questions from patients during wait time prior to the visit were shown to significantly increase the number of questions patients asked the doctor. I can not recall a physician of mine, or my wife, anticipating anything on mine/our behalf. When you think about it things like “getting old” or surviving the loss of a loved one, so much of what happens to us is highly predictable (Kuebler Ross Stages of Loss for example). that is is surprising that intelligent people fail to pick up on these important “verbal cues.” But people, including doctors generally don’t. Perhaps it is because the act of doing so may “open a new can of worms” and lead to longer appointments. Just imaging how surprised patient would be (as in WOW!!) if they thought someone heard them.

      You are dead on regarding assumptions about what people..as in patients…should know. Some of the most interesting research is on the subject of patient’s beliefs as to the cause and severity of disease. Let’s say someone is diagnosed with diabetes at 50 years of age. The patient is told they have Type 2 diabetes and is then prescribed a course of treatment in the belief that the patient 1) understands and agrees with the diagnosis, 2) understands and agrees with the severity of the diagnosis and 3) believes the prescribed treatment will work. If the patient believes that the condition is just a touch of sugar which will go away like Aunt Mille..then the whole treatment plan falls apart…simply because the doctor assumed that the patient understood the severity of her condition.

      Gosh you really got me started.

  3. davisliumd says:

    Thanks for the thoughtful post. I would agree with you and less with your wife. People / patients are incredibly busy and while I agree there is some responsibility for patients to be advocates for their health, it is difficult because you don’t know what you don’t know.

    My concern is with the empowered patient movement that most of the “ills” of the health care system may be erroneously attributed to a lack of patient engagement and that if patients would only be better that the health care system problems would be solved.

    http://davisliumd.blogspot.com/2010/09/empowered-patient-is-this-what.html

    Sorry to hear about your loss.

    Davis Liu, MD
    Author of Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America’s Healthcare System
    (available in hardcover, Kindle, and iPad / iBooks)
    Website: http://www.davisliumd.com
    Blog: http://www.davisliumd.blogspot.com
    Twitter: davisliumd

    • Davis,

      Thanks for your comments and your expression of sympathy. I appreciate it.

      There is something very scary about the extent to which providers are rushing to push more and more responsibility for one’s health back to the patient. The reasons are clear…there is just so much any one physician can do given the lack of time, reimbursement and skill set. I guess what I am most surprised at is the spirit with which some providers do this. It the patient’s fault if they don’t lose weight, exercise more, stop smoking, eat more healthily, etc. Not that the doctor has never once told them that they have a problem in these areas and that they need to change their health behavior for xyz reasons. Providers just assume that people know they have a problem and need to change. In studies of obesity, a significant % of patients report never once being told by their doctor that they have a weight problems and need to do anything about it. Other studies show that when providers make unequivocal recommendations..patients are more likely to follow it. The implication is that docs shouldn’t be surprised if a patient doesn’t “read their mind” and know they have to lose weight, etc. Everyone assumes that patients “get” what doctors are thinking…and if they don’t , the patient is just plain stupid. Same with diabetis that don’t comply with their treatment..don’t they know how serious things can get?? Probably no.

      You are right about patient empowerment in your blog post…only certain patients under certain situations really want to “do it on their own,” e.g., be empowered. The sicker a person is the more patients are will to trade of physician expertise for “having a say” in their care. Often empowerment is just a convenient way of justifying pushing more responsibility on the patient without asking or telling them…often with dire consequences.

      Thanks…

  4. I’m sorry for your loss. Patient empowerment is a deep subject as you have illiustrated so clearly.

    I easily could have ended up like your mother. I had a complete / radical hysterectomy for cancer 18 years ago at the age of 48. No doctor discussed the impact of the change in my hormones on my increased risk for osteoporosis. It was only because I went to see an endocrinologist for another issue that I was tested for osteoporosis and found to have it in my spine.

    I have a medical background, but was not aware that the endocrinologist is the specialty that covers osteoporosis. Gynocologists often treat it, as do internists. After I was diagnosed I wondered why neither of mine ever talked about it or suggested I be tested. Many doctors don’t seem to think beyond the problem at hand nor do they warn about or test for conditions that an exisiting condition can lead to.

    I don’t think patient empowerment includes patient having enough medical knowledge to self-diagnose problems of any kind. I also think many people are defining health literacy as having medical knowledge similar to the medical profession. I think people should learn about their particular condition(s) once diagnosed so they can better care for themselves and interact more effectively with their medical team – targeted learning.

    To me, health literacy is knowing ourself and our ongoing medical care / history. being able to communicate that in an effective way, knowing how to make connections and help our HC providers make connections in our medical history & current issues and have enough medical knowledge about our conditions to ask knowledgeable questions. It also involves knowing the questions to ask in various circumstances. I have pulled these questions together in a set I call the Critical Question Series to accompany my book The Savvy Patient’s Toolkit which teaches patient empowerment and provides the tools. Sorry for the ad, but this is my area of expertise. I can’t reproduce the book here. http://savvypatienttoolkit.com

    • Margo,

      Thanks for your thoughts and kind words. I too was surprised at how little I understood about osteoarthritis, compression fractures and the care of elderly. I had never heard of Sundowners Syndrome before. Most surprising was how little in the way of “research” exists on the subject.

  5. Pete Moore says:

    For self-care or self-management to truly take place there has to be teamwork between the patient and the health care professional. Why does this not happen? Mainly because the health care professional has been trained in the medical model and the patient………….well we know they haven’t. It’s like to two people from different countries trying to have a conversation in different languages.

    Teamwork is essential see http://www.paintoolkit.org/tool-eleven

  6. Carolyn Thomas says:

    Stephen, I’m so sorry about your mother. My own mother died on February 21st (age 84) so I’m particularly aware these days of the enormity of such a loss.

    Our mothers’ generation is also one that would rarely, under any circumstances, request a second opinion – because to do so would be to offend their doctors.

    I do believe that things are changing, but with varied results, as patients feel more entitled to ask questions and, more importantly, demand answers (even if they have to find them online).

    When I asked the middle-aged, white-coated E.R. physician who had misdiagnosed my heart attack as GERD: “But what about this pain radiating down my left arm?”, I was scolded later by his E.R. nurse, who actually said these words out loud to me:

    “You’ll have to stop questioning the doctor. He is a very good doctor, and he does NOT like to be questioned!” And this happened in 2008 – not 1958, believe it or not. Astonishing!

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