Gary Oftedahl: On the "Empowered Patient"--a (pre)Cautionary Tale

Ah, I remember the days.  For those of us over 40, the world of medicine was characterized and embedded in our memories by the vision of Marcus Welby, in a kindly, paternalistic way, solving complex medical issues, in 60 minutes—including commercial interruptions.  Not to mention that he did that while viewing X-rays upside down on a view box, and interpreting EKG strips while viewing them vertically—but that’s nitpicking.  Along with his partners, Ben Casey, and Dr. Kildare, an image and expectation of medicine was embedded in our thinking, which has persisted for generations.

It is analogous to families who grew up watching the exploits of Ozzie and Harriet, Donna Reed, and Father Knows Best, trying to relate the reality in which we lived to the idealistic situations posed on our TV screens.  How many of us have been affected by the sense of disappointment, when as children we failed to experience that idyllic life in our own situation.  But that’s for a different discussion—and much family therapy.

Today, in health care, while the vision of Marcus Welby may persist, there are few such physicians practicing in that fashion.  The world of medicine, confronted with exploding technology, increasingly complex interventions, uncontrolled and unacceptable costs, has begun a transition to a new paradigm focusing increasingly on the patient/family/relationship aspects of health care.

This era likely started with the Civil Rights movement in the 1970’s, which began to address the need to provide the “marginalized” segment of  our population with the ability to become active participants in society.  It was here we began to hear about “empowerment.”  With the release of the IOM report, To Err is Human, followed up in several years with the highly referenced, Crossing the Quality Chasm, the impetus toward transformation accelerated.  Terms such as patient-centered, family-centered, patient engagement, and patient activation became the focus, rightly so, of much of the change being experienced by those of us old enough to remember the days of the kindly Dr. Welby.

Today, one of the buzzwords which permeates the literature around health care is   “empowerment,” specifically in regard to the need for an empowered patient.   Those who’ve read my previous posts will recognize I’m often concerned with our affinity to incorporate new ideas, new terms, new concepts without understanding the implications—both intended and unintended—of such enthusiasm.  As we rally around the flag of “empowerment,” both from a patient and from a health care provider perspective, do we understand and are we able to accomplish what that implies?  For much as I’m concerned about the unintended consequences of evolving medical home efforts (see last blog), are we creating an expectation which is feasible, given the present state of our health care system, the persistence of underlying assumptions from a previous era (yes, that’s you Marcus) and what will be required of all of us to move this forward?

The process of empowerment covers a vast array of meanings, interpretations, definitions, and disciplines.  It is often defined as a multi-dimensional social process which helps people gain control over their own lives.  While often associated with feminism, we are increasingly seeing it in addressing the needs of  our health care system in becoming more responsive to the needs and values of our patients.

Within the health care system, patient safety issues, money, and lack of time are all part of the move to empower patients.  My question, and a concern, is whether either side of the equation is fully aware of the opportunities and also the challenges that face us.  For empowerment implies a shift in power, and a willingness to both delegate (from the provider perspective) and accept (from the patient side) that responsibility.

What is needed if that is to occur?  Buried in the literature on empowerment are several elements that are often used to describe the process.  Let’s examine a few briefly and comment on the obstacles that might be hidden in our assumptions.   An empowered patient would or could demonstrate the following capabilities:

• The ability to access information and resources for decision-making.  While we are working toward increased transparency, the type and quality of information available is at its best incomplete.  I’ve in the past referenced the similarity of our health care system to financial planners.  I get a lot of “information” from my financial planner—but in a format that is often not empowering.   Would you agree our patients might feel the same angst?
• Having positive thinking about the ability to make change.  In the face of hectic life demands, the challenges of living day to day, coping with chronic medical issues, we have much to learn about how we “engage” patients.  Moving away from my favorite medical concept—compliance, adherence— to one of shared responsibility will be extremely difficult.
• Increasing one’s positive self-image and overcoming stigma.  Think about the prevalent stigmas surrounding mental/behavioral health issues.  Consider the name-calling,  and negative imagery around obesity as one other example and it’s impact on self-esteem.  Contemplate the impact of applying a “diagnosis” to someone, and the effect on their behavior.  (Anyone familiar with the concepts of mindfulness?—we need to be).  There’s a lot of stuff here—and we’ve much to learn.
• Ability to be a smart health care consumer, with regard to value.  Really, do I need to say more?  In an era of “more, more, more,” and where evidence- based care guidelines are viewed by over 65% of the population as being an infringement of personal choice, we have huge challenges.  In fact, the entire way we provide benefits and assign financial responsibility may be a most significant issue in driving a consumer perspective.  Few if any patients use cost/value equations in making choices, yet empowerment as a concept suggests that’s essential.
• Ability to consider a range of options and resources for decision-making.  We’re only beginning to identify and address the challenges of decision-making.  How to incorporate patient values, understand principles of human behavior, learn more about the neuroscience of decision-making are areas just beginning to be addressed in any substantial way in the health care arena.

There are other aspects of empowerment, but for demonstration purposes, these seem sufficient to suggest we have many challenges ahead of us.  Now understand, I’m not suggesting it’s impossible, or that we’re on a fool’s journey, it’s just that we need to consider the implications of what we’re striving for.  It will require not only significant changes on the part of our patients, but a huge shift in how many of us in health care view our role, and in what we provide as support for this rapidly growing movement.

If empowerment suggests becoming actively involved, becoming a part of the team, taking personal, or at least shared responsibility, we’ve got much more to do than create the framework for a health care/medical home.  We have to begin to address the potential tectonic shift in our paradigms, and become active participants in creating the environment that will support this new and important partner in our health care system—the empowered patient.

I’ve got to go, my financial planner is asking for my decision regarding a fund  transfer—I think I know how some of my patients feel.