Moving Beyond the Jellyfish Model of Health Care

by JHI Staff on April 25, 2014

In some regions of the world, elderly family members may be shielded from knowing that they have been diagnosed with a terminal illness. These patients are sometimes brought to clinics with upbeat, generic names, so that they can be cared for without ever having to know that they are terminally ill.

Johns Hopkins Medicine International is committed to respecting cultural differences in the many countries in which we collaborate. But this particular cultural norm—while well intentioned—is challenging for us. Medicine in the United States and most of Europe has become committed, as a matter of ethics, to being open and honest with patients. We at JHI share that belief, and support our collaborators in adopting the same approach. (They all do.)

But even in the United States, it wasn’t always as clear that clinicians should be transparent with patients. A few decades ago, many U.S. physicians would “protect” patients from learning about troubling diagnoses. They gave sugar pills under the guise of prescribing treatments, to fool patients into feeling they were being helped when in fact there was no treatable diagnosis.

More generally, physicians usually called the shots when it came to tests and treatments. This idea that health care is entirely up to the doctors is sometimes referred to as “medical paternalism”—the notion that medicine knows what’s best for you. I call it the “jellyfish” model of medicine: The patient is expected to passively float, pushed in whatever direction the health care system deems appropriate.

It’s different today. Many patients will research their symptoms and want to discuss diagnosis and treatment, and physicians consider them a partner in the decision-making. In hospitals, patients are now seen as full members of their clinical-care team.

That’s the way it should be. There are real downsides to the jellyfish model of health care. First, when patients aren’t encouraged to become involved in their own health care, they’re more likely to fall short when it comes to adopting healthy lifestyles. Second, it can lead to higher costs. As I’ve written here before, patients who don’t know what their treatments cost the system, and who have no incentive for caring, often end up with more expensive procedures than alternatives with the same benefits.

It makes sense for patients to be fully informed, so they can be smart shoppers. We’re already seeing the ground being laid for more of that in the U.S., with the rise of retail health care in the form of urgent-care store-fronts and pharmacy clinics, among other changes.

Cultural preferences for keeping family members in the dark about their health is not the only tricky issue raised by the drive to better inform and involve patients. The U.S. Food & Drug Administration recently stopped the sale of a popular personal genome-test service marketed to consumers, arguing in a statement “that patients relying on such tests may begin to self-manage their treatments through dose changes or even abandon certain therapies.” In other words, efforts to give certain types of difficult-to-interpret personal-health information could lead patients to cut doctors out of the decision-making loop in ways that could be dangerous. (The Journal of the American Medical Association weighed in on the question here.)

In spite of such thorny questions and the tensions that arise over any sea change in health care, clearly the widely accepted trend is to favor patients getting ever more information and being ever more active in their health care. It’s a trend we push for in our international collaborative work—one that our collaborators embrace. Medicine should never abdicate its role of helping us understand and act on health information, and we have to hope that patients recognize the need to listen to their doctors as part of the process—especially when it comes to medication. But rarely is there a real need for medicine to “protect” us from learning too much about our health.

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