patient education

[This post, which was first published on The Health Care Blog on 5/22/13, 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.