Sachin Jain and John Rother’s JAMA commentary, “Are Patients Knights, Knaves, or Pawns?” is an article that begs to be shared.  The first time I read it I had to stand up, I was so excited — how can I design a survey to capture these questions?! was my first thought. My second thought was how soon can I post this online and get the debate rolling?

Here’s a quick, wonky summary: Jain & Rother use Julian Le Grand’s metaphor concerning the motivations and behavior of post-war public servants and citizens in Britain as a springboard to consider how health policymakers in the U.S. might anticipate a transition to a patient-centered system or its alternatives. If Le Grand’s thesis is new to you, please read “Power to the pawns: For excellence in public services, should societies rely on altruism or self-interest?” (The Economist, October 30, 2003).

This is a debate that needs wide exposure. So, since the full text of the article is behind a paywall, I’m going to excerpt it lavishly. Here goes (with footnotes translated to links):

Patients as Knights

If a society conceives of patients as well-intentioned knights, it assumes that the will and values of patients should drive the structure and organization of health care, called patient centered by the Institute of Medicine and extolled by leaders and consumer advocates. Patients are trusted to wisely use health care services when necessary and to take responsibility for actions they can take and behaviors they can learn to promote their own well-being. Individual patient decision making and autonomy are the center of the system with patients striving for health and following expert medical recommendations. The role of policy and payment is mainly to empower patients and physicians working together toward shared aims; insurance coverage should make these interactions as facile as possible.

Patients as Knaves

If a society conceives of patients as knaves, policy, management, and education efforts are designed to work against patients, not with them. Waste and even fraud are the behaviors that come most naturally to the knave—and it is the role of physicians and health insurance companies to monitor for this behavior and impose stiff financial penalties to deter it. In this scenario, patients engage in risky habits because they are in denial, confident that few personal consequences will follow, and they are passive regarding consequences because others will subsidize the costs of the medical consequences. They use health care—office visits, hospitalizations, procedures, and diagnostic studies—because they do not want to take responsibility for themselves. Policies and regulation must guard against malfeasance, including high co-payments and high-deductible insurance policies as mechanisms to ensure against knavish patient behavior.

Patients as Pawns

If societies conceive of patients as pawns, efforts are applied to building systems that ensure patients do what is right for themselves and for the health care system, because patients cannot be trusted to do so on their own accord. In this scenario, patients are considered uninformed or generally misguided, with unpredictable and unscientific behaviors. The pawn patient is merely a function of the environment and incentives he or she is given; accordingly, physicians and health insurance companies must be benevolently paternalistic and prescriptively decide on clinical priorities. Shared decision making is irrelevant because the physician is responsible for making sure the patient makes the right decision. The role of health policy and regulation for the pawn patient is to guide every behavior because patients lack judgment to do what is right.

In the implications section, the authors write:

As patient behavior is tied to rising costs, and increasing scrutiny is applied to the volume of health care services consumed, policy discourse often reflects the perspective that patients are an obstacle to, not an enabler of, a functioning health care system. Rather than counting on patients to exercise good judgment in managing health care problems, this view holds that patients should be guided with an increasing menu of behavioral or financial devices and strict regulations. Because it is assumed that patients will not undertake healthy behaviors on their own, they are increasingly subject to directive health and wellness programs by their employers, health plans, clinicians, or communities.

As with physicians, the patient in the United States today is seen either as a knave or a pawn and is seldom viewed as the knight. Patient centeredness is lost in a tangle of insurance arrangements. Nonetheless, most patients do not abuse the health care delivery system or actively injure their own personal health. Many are struggling with access to basic services, and others defer needed treatment because of the high deductible amounts health plans put in place.

Since the publication of this commentary, the landmark study “The Oregon Health Insurance Experiment: Evidence from the First Year” was released, showing that if you give people of few means access to health care, “they not only find regular doctors and see doctors more often but they also feel better, are less depressed and are better able to maintain financial stability” (to quote from Gina Kolata’s story in The New York Times). It’s a study that merits a separate post, but let’s forge on.

Next the authors make a point that I’m not sure I agree with:

Many patients seek more information on the internet because they perceive they cannot get needed information from trusted clinicians.

Pew Internet’s research consistently shows that the internet is a supplement to advice from health professionals — that we can agree on. But my observation, based on the literature and my own research, is that patients seek information online for a much wider variety of reasons. Here are three:

  • trusted clinicians dispense information, but patients want to do more research on their own to better understand it
  • less-trusted clinicians dispense information, but patients want to fact-check it
  • a peer patient or caregiver has more or better information than any clinician on some topics

And the grand-daddy of all reasons, probably the most common:

  • patients go online to get health information wholly unconnected to a clinical encounter, without reference to whatever information a trusted clinician might offer to them

The authors close out this section with a heck of a good question:

How can society avoid inflicting harm on the patients whose needs remain great and genuine while guarding against abuses by the few whose needs are not?

The recommendations section is very interesting. If I could wave a magic wand, I’d make it a wiki so I could see the changes suggested by authors and reviewers as well as the suggestions from readers, both health professionals and consumers. The ideas laid out are excellent, but I wish for so many more:

The success of innovations in care that seek to improve coordination and reduce unnecessary and harmful overuse will rely on effective connections to the motivations of patients toward better health. For the vast majority of patients, these motives are consistent with their behaviors. Psychological theory suggests that health plans that create a “gaming” mentality by clearly establishing a distrustful relationship with patients and families may backfire. Unless patients trust that clinicians have their best interests first and foremost, any barriers to seeking service will be seen simply as money-saving measures and create the impression that these services are something the patient ought to be able to get and therefore ought to want.

As better outcomes and lower costs are sought by innovative delivery models and new communication technologies, patients must be engaged as trusted partners, not as passive subjects or manipulative knaves. Coordination of care requires communication with patients, their families, and other members of the health care team, often including community resources. Optimal outcomes are not possible without the patient at the center expressing his or her personal values and goals for treatment, trusting that clinicians share that focus.

There are a small number of patients who abuse the system by habit or by pathology (ie, Munchausen syndrome or hypochondriasis). Still, Le Grand offers an important warning that warrants repetition: it is critically important to understand and get true motivations right. Best intentions will fail if persons largely of a knavish quality are treated as knights, but the same may be true for “policies fashioned on a belief that people are knaves if the consequence is to suppress their natural altruistic impulses.”

Now’s your chance: what do you think?