Medicine in Denial: What Larry Weed Can Teach Us About Patient Empowerment

[This post is the third and final part of a commentary on “Medicine in Denial,”(2011) by Dr. Lawrence Weed and Lincoln Weed. You can read Part 1 here and Part 2 here.]

It seems that Dr. Larry Weed is commonly referred to as the father of the SOAP note and of the problem list.

Having read his book, I’d say he should also be known as the father of orderly patient-centered care, and I’d encourage all those interested in patient empowerment and personalized care to learn more about his ideas. (Digital health enthusiasts, this means you too.)

Skeptical of this paternity claim? Consider this:

“The patient must have a copy of his own record. He must be involved with organizing and recording the variables so that the course of his own data on disease and treatment will slowly reveal to him what the best care for him should be.”

“Our job is to give the patient the tools and responsibility to organize the knowledge and slowly learn to integrate it. This can be done with modern guidance tools.”

These quotes of Dr. Weed’s were published in 1975, in a book titled “Your Health Care and How to Manage It.” The introduction to this older book is conveniently included as an appendix within “Medicine in Denial.” I highlighted it this section intensely, astounded at how forward-thinking and pragmatically patient-centered Dr. Weed’s ideas were back in 1975.

Thirty-eight years ago, Dr. Weed was encouraging patients to self-track and to participate in identifying the best course of medical management for themselves. Plus he thought they should have access to their records.

Fast forward to today. The Weeds’ book, appendix aside, contains many of the best ideas I’ve encountered regarding empowering patients and engaging patients.

This is because in the Weeds’ ideal world, healthcare would provide an orderly, consistent, dependable, and transparent infrastructure through which patients would move through as required by their medical needs, their preferences, and their goals.

The Weeds compare this vision of healthcare system to our existing transportation system. It’s an interesting analogy. They point out that travelers rely on expert service providers (i.e. pilots, travel agents, mechanics) as needed, but that the primary decision makers are travelers themselves, who are able to choose the destination, the route, and the mode of travel for a journey.

The Weeds use their transportation analogy to make a strong case for individualizing medical care according to patient preferences. They point out that two people driving across the country might choose completely different routes, depending on their preferences and needs, and that no one would expect travelers to conform to an “evidence-based” best route determined by experts.

They observe that similarly, no one should expect that two different people labeled with the “same” disease have comparable medical needs.  They correctly note that “effectiveness is context-specific,” and that the patient really should be the one best positioned to determine effectiveness.

Hence the Weeds describe high quality, efficient care as emerging “case-by-case, each person finding a different pathway in a progression of many small steps, with each step carefully chosen, reliably executed, and accurately documented.” They also critique evidence-based medicine, which they feel interferes with the process of thoughtfully tailoring care to fit a patient’s uniqueness.

They propose that health care not be an “esoteric domain for specialized experts” but rather be seen as a “universal human pursuit.” They state that the health care system should be usable by ordinary consumers when feasible.

This is a very robust and well-articulated vision of healthcare that serves the needs and well-being of patients, rather than of providers. I especially liked the emphasis on patients learning to take an active part in individualizing the medical care so that it can best meet their needs, and would say this approach is essential if primary care doctors are to serve the role of expert consultants helping patients meet their health goals.

In fact, an entire chapter of “Medicine in Denial” is devoted to the need to develop a system of educating patients and helping them gain the skills to be more autonomous in healthcare. Particular good in this chapter is the Weeds’ explanation of why patient involvement is essential in two common medical situations: cases of medical uncertainty, and cases of chronic disease.

“In situations of uncertainty, the patient faces a set of choices, with substantial evidence for and against each choice based on the details specific to his or her own case. The physician cannot be relied upon to identify the individually relevant options and evidence without the right informational infrastructure. Once that infrastructure is available, reliance on the physician radically diminishes. The patient’s private judgment should control, as trade-offs are recognized, ambiguities assessed, and choices made. The choices are inherently personal.”

“[Chronic disease] cases start with great uncertainty, but often what needs to be done becomes reasonably clear from careful investigation and planning. Then the issue is execution, feedback and adjustment…It is the patient, not the physician, who must live with the risks, the pain, the trade-offs, the effort and time that decisions may entail…The patient is the one who must summon the resolve to make the behavior changes that so often are involved in coping with chronic disease. If the patient does not feel responsible for deciding what has to be done and is not heavily involved in developing the informational basis of that decision, then very often the result is “noncompliance” with doctors’ decisions.”

Given that in geriatrics, we are constantly trying to help patients navigate medical uncertainty as well as chronic disease, the above paragraphs really resonated with me.

Psst! Pass it on: patient empowerment is the underlying driver of “Medicine in Denial”

It’s this extremely patient-centered and person-centered vision of what healthcare should be that underpins the Weeds’ multiple detailed critiques of healthcare as we practice it now, and their proposals for how healthcare should be changed.

But it seems that “Medicine in Denial” has generally not been perceived as a book about transforming healthcare to support participatory medicine. For instance, Dr. Weed is not mentioned by name in e-Patient Dave’s recently published book “Let Patients Help,” nor is he mentioned in Eric Topol’s “Creative Destruction of Medicine,” two recently published books that emphasize the need for healthcare to provide more information and autonomy to patients.

This is too bad. Many people are currently in support of changing healthcare to better meet patients’ needs. But few have been as thorough, articulate, and perceptive about the obstacles to such changes. I’d also say that only a minority of writers seem to understand, as the Weeds do, the real challenges of managing multiple chronic illnesses over years.

Today we have a growing e-patient movement pushing for substantial changes in the patient-provider power dynamic. We also have the Internet making information widely available, as well as digital health technologies that can finally offer patients unprecedented assistance in accessing and organizing their own health data. Larry Weed was surely ahead of his time in 1975, but what about now?

Well, now it seems that Larry Weed is mainly thought of as someone who criticizes the way physicians approach diagnosis, or wants to reform the way they maintain medical information, or proclaims that all of medicine is in denial. This, I think, is in large part due to “Medicine in Denial” itself (starting with its title).

It’s a good book, but it is long, and feels somewhat sprawling. Who exactly is the intended audience?  I found it a bit unclear. And what are the authors asking of the reader, other than to understand their analysis and agree that the profession of medicine is, in fact, in denial? The Weeds do describe how they believe medicine should be practiced, but the book lacks specific suggestions on how we might get there from here.

I found myself wishing the Weeds had worked more closely with an editor and – don’t laugh – some kind of a marketing or strategy consultant.

Because I think there is a market for their ideas, and that market is essentially the patients themselves, along with the patient engagement movement. It would be patients, after all, who have the most to gain from medicine adopting a more orderly and transparent approach to diagnosis and documentation. Likewise, it is the patients who have the greatest interest in chronic medical care being tailored to their individual needs, rather than proceeding according to evidence-based guidelines which may or may not be well-suited to their medical uniqueness.

So I found myself wishing that the Weeds would’ve addressed their book more directly to patients, and to those who are rooting for “disruptive innovation” in healthcare and hoping it will usher in a shiny new future of patient empowerment.

Summarizing my impressions of Medicine in Denial

My takeaway in assessing the contents of Medicine in Denial was this:

  • The Weeds’ vision of what healthcare should be is very sound, compelling, and in line with what many people – patients and healthcare experts – say healthcare should become. This book can and should be considered a manifesto for participatory medicine, especially since the Weeds do a particularly good job of emphasizing how we can individualize care according to the goals and preferences of patients.
  • The Weeds’ analysis of how the common practices of physicians – both in terms of cognitive work and of documentation — interfere with ideal healthcare is robust, detailed, and compelling. The flaws they identify in current practice are undeniably present and adversely affecting care. This should not really be a subject for debate (although it probably will be). The debate should be about what we can and should do to address these problems.
  • The Weeds’ proposals for alternative methods of delivering healthcare are intriguing, and deserve serious consideration. In this commentary I’ve touched on their proposals for how patients should be initially assessed (via standardized inputs and knowledge couplers, followed by clinical judgment and patient-provider collaboration), and how medical charting should be reformed to support comprehensive individualized care over time. Can these proposals really be implemented and operationalized at scale? I’m not sure, we would have to pilot the approaches, or better understand what happened in those smaller practices that Dr. Weed says adopted his methods several years ago.

In short, I believe Larry Weed and his son Lincoln are completely right about what healthcare should offer to patients, and what’s wrong with the way doctors practice now. Their analysis of what’s wrong touches on issues related to quality, outcomes, patient-centeredness, patient empowerment, medical education, the training of the healthcare workforce, and the personalization of medicine.

What to do about all that’s wrong about healthcare? These are the difficult questions that we are all wrestling with. I don’t know that implementing all of the Weeds’ ideas is the way to go, but I’d like to see their ideas being given more serious consideration.

“The religion of medicine is not feats of intellect. The religion of medicine is helping to solve the problems of patients, and the compassion involved in the very act of care.”

Words to change medicine by.

Leslie Kernisan, MD, MPH, has been practicing geriatrics since 2006, and is board-certified in Internal Medicine and in Geriatric Medicine. She blogs at GeriTech.

9 replies »

  1. When I first heard about Dr Weeds work I had similar thoughts – this make so much sense why hasn’t it more widely adopted. The type of care and documentation of that care that Dr Weed so eloquently speaks of is time and resource intensive. To make this a reality we need a restructuring of payment and educational models that support thistype of time and resources. We also need to develop interdisciplinary teams to provide care. These teams are not just multidiscplinary by medical specility but also by provider types including physicians, nurses, advanced practice providers (nurse-practitioners, physician assistant, midwives), social workers, physical and occupational therapist, psychologist and others as appropriate. Providing care has moved beyond a being a solo activity. We can not be all to everyone 24/7. Patients are three dimensional and it take many different perspectives to provide care that is meaningful.

  2. With the ever increasing challenges facing our health care industry why are not more Physicians demanding that we immediately begin a crash program to objectively research the potential and possibilities of Medicinal Marijuana. We are already over 30 years behind where we could have been, and centuries behind those who were doctors before there were Doctors.
    Patrick Monk.RN.

  3. Leslie –

    The empathy is appreciated. Lord knows, geriatrics demands a special breed of patience.

    Scalability of individualized care isn’t feasible because the current reform climate discounts complexity or sweeps it under the rug altogether. It prefers labels and the timed implementation of guidelines, many of which are based on studies whose conclusions eventually turn out to be false, or worse, are true but meaningless in that they don’t translate well to the uniquely complex patient in the room.

    The result is pressure on physicians to use a one-size-fits-all approach to each one-of-a-kind puzzle. Complex problems rarely yield to simple solutions.

    Like you, I too am for being freed up to do what can’t be done by computers, as long as computers do that job extremely well in terms of the user experience. I’m no Luddite, but I fear that the rolling tanks of reform will force doctors into paying more attention to their devices and their overseers than to their patients.

    Thanks again and best wishes.

  4. hi Dr. Berndtson,
    Thanks for this comment. I think you and I probably have a lot in common: we’re both taking care of very complex patients and had to leave the insurance system to do it.

    I personally feel like I could use some computerized structure and support in staying on top of everything with my complex elderly patients. I think this would free me to do what CAN’T be done by computers (and there is plenty of it that needs doing in geriatrics.) As physicians, we have a very important role to play in helping patients interpret and understand their treatment options, and in providing moral support along the way.

    Another important issue is how to ensure better care at scale. Depending on the efforts of very attentive and thoughtful physicians such as yourself is not scalable. Hoping that every elderly person can see a geriatrician (who isn’t too rushed and burned out) is not scalable. Proper leveraging of technology IS scalable.

    Re ACOs, I don’t see how the ACO system is going to provide most patients with the care they want, although it will probably result in better care for some of the high utilizers.

    Anyway, you’ll have to let me know what you think once you’ve read the book!

  5. When I read part one of your series I felt angry. I thought it was dismissing doctors whose approach to care could be described as, “case-by-case, each person finding a different pathway in a progression of many small steps, with each step carefully chosen, reliably executed, and accurately documented.” I thought they were advocating for evaluation by questionnaire. This post is clarifying.

    I left primary care because it was making me insane. The evidence-based medicine concept was (and is) being wielded by insurance honchos and policy wonks as a way to control cash flow for already powerful corporate entities. The net result is to cut the uniquely individual needs of patients out of the health care equation.

    A former colleague is now the chief medical officer for a major insurance company. I once asked him what was in the works to get health care costs under control. His answer: “HMO is the only way.” They are currently phasing out PPOs and transitioning to the HMO on steroids known as the ACO.

    The focus will shift from the care of individuals to the care of a faceless population, using a cookbook of evidence-based guidelines designed by insurers whose greatest expertise lies in collecting rivers of premium money and telling patients and physicians what they can’t do with it.

    Yes, the care of individuals can be spotty, self-serving, wasteful – even dangerous – when undisciplined. But within the new form of discipline that is infiltrating our health care sector, code words (evidence-based, accountable) are being used to fatten the already rich in a scheme that will make it harder to personalize and coherently document the care process for those with chronic conditions or unexplained symptoms that persist despite usual medical care.

    I am a solo physician. My practice specializes in helping people whose chronic problems are medically uncertain or non-responsive to usual care, and I am able to produce favorable outcomes where usual (and mostly excellent) care had failed. The only way I could do this was to leave primary care and the insurance networks. The time pressure and the invisible, nitpicking third party in the room rendered such care impossible.

    In an ecosystem where every patient problem is viewed as the ACO’s cost, the challenge of keeping hospital managers, physicians, and patients happy rides on an ability to resolve inherently conflicting interests. In other words, the system we’re building will crash by design.

    While many needed and welcome changes are happening with the current wave of reform, the power hungry seem to be gunning the boat straight toward a major storm (the lifeboats will take them to shaded beaches while the rest of us pray for rescuers). The powers that be ignore the physicians in the trenches who are trying to mold their practices to principles that empower patients to create a fulfilling sense of goal-directed teamwork. They’d rather not contend with the cognitive dissonance. They have a job to do.

    In reading this, part three of your series, I can see that this is the same Dr. Weed who impressed me so much with his SOAP logic when I was just a student. Thank you. I look forward to reading their book, as now I understand that it contains the beginnings of a roadmap to a wiser, saner health care system.

    • Dr Berndtson,

      You might be interested to know that Dr. Weed explains that the methods he proposes are the antithesis of evidence-based medicine — and that, ironically, standardized and complete data collection upfront is the only way to support personalized-medicine.

      As a good (and easy to digest) intro checkout “Larry Weed’s 1971 Internal Medicine Grand Rounds” on YouTube.


      • John –

        Some 40 years later the best we can say is that we’re managing to digitize the wrong paradigm for chronic disease. We’ve getting more structured data, but our outcomes still leave little to brag about, and the information trail for each patient reads less a like a problem-oriented narrative and more like an endless scroll of fragmented entries. It’s easier to read, but it’s still hard to make sense of what’s going on with the patient.

        This only goes to show that the need for coherent information trails is greater than ever and that Dr. Weed was way, way ahead of the curve on this subject. That he’s still at it warrants a standing ovation. Better yet, it warrants a concerted effort to implement his vision of a more effective, less idiosyncratic way of communicating what’s going on with the people under our care.

        Thanks for leading me to youtube for that captivating blast from the past.

Leave a Reply

Your email address will not be published. Required fields are marked *