The Persistence of Parentalism in Healthcare

I recently attended events during the World Health Organization’s 71st World Health Assembly in Geneva. This is always an exciting time for those of us working in the global health and healthcare sector. It brings together a rich collection of people from every corner of the world and every discipline; academia, government, foundations, policy, regulatory and healthcare provider organizations. It is my experience that these sorts of gatherings have several benefits aside from the obvious networking and sharing of information. For me, it often is a time to take those ideas and reflect. I heard wonderful panelists and speakers on a range of topics from value-based care to universal coverage, NCDs and primary care. It was all pretty much what you would expect, but with an overall positive – we are continuing to move forward to our goals feel to it. Then it struck me. The prevailing perspective describing the path forward was one of not-so-obvious parentalism.

This is certainly not a new attribute of our healthcare system. In some regions of the world, it is a cultural norm for people to believe that elderly family members should be shielded from the fact that they have been diagnosed with a terminal illness. These elderly patients are sometimes brought by the family to clinics with upbeat, generic names, so that they can be treated and cared for without ever having to know what it is they're being treated for, or that they are terminally ill. Patients have been at the periphery of healthcare as a consequence of health information asymmetry for eons. The emergence of mHealth and other technology-enabled tools has the ability to flip that dynamic upside down. 

But even in the U.S. it wasn't always as clear as it may seem today that clinicians ought to be fully honest with patients. Four or five decades ago, many U.S. physicians would take it on themselves to "protect" patients from learning about potentially troubling diagnoses. Many also gave out sugar pills under the guise of prescribing treatments, in order to fool patients into feeling they were being helped when in fact there was no treatable diagnosis at hand.

More generally, and even to some extent continuing into contemporary times, physicians usually called all 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"--it's the notion that medicine knows what's best for you, so you should just take whatever information and treatments the doctor hands out. I see it as the persistence of the age-old model of medicine where the patient seeks healthcare and just passively floats around, pushed in whatever direction the health care system deems appropriate.

At the risk of sounding too cynical- Even the phraseology currently used by healthcare organizations “we need to put the patient at the center” smacks of parentalism. The reality is that patients have been asking to be involved at every level for some time. As noted in an article in Forbes last year, the empowered consumer is a force to be reckoned with as they put themselves at the center. Additionally, as part of its Global Agenda report, The World Economic Forumlays out a pretty compelling outline of how the empowered consumer will expect to be treated differently in this new model. The article notes that There are five characteristics that empowered consumers typically display. These individuals tend to be: highly informed, mobile, loyal, hands-on and global.

Things have started to change, to a large extent.  A 2015 report by Deloittedoes a great job of detailing the drivers and attributes of consumer-driven healthcare. Physicians have come to expect many patients to come in clutching print-outs of Internet research into their symptoms and are willing to engage in dialogs about diagnosis and treatment, with the patient being treated as a partner in the decision-making. In hospitals, patients are now seen as full members of their clinical-care team. And that includes keeping patients fully informed about their diagnoses and treatments. 

That's the way it should be. There are some real downsides to the passive parental model of health care. For one thing, 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, such as eating healthfully, exercising, and not smoking. For another, it can lead to higher costs. Patients who know nothing about what their treatments cost the system, and who have no incentive for caring, are far more likely to end up with treatments that cost much more than alternatives that provide almost the same benefits. 

That's something the U.S. can learn from other countries, where the more common model is that treatments seen as providing the most benefits for the costs are offered at low cost to the patient, and more costly treatments come largely at the patient's expense. Here, too, 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 and pharmacy-based clinics, among other changes.

In spite of such thorny questions and the inevitable tensions that arise over the rapid pace of 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 and is generally one our collaborators embrace. Medicine should never abdicate its role of helping us understand and wisely act on health information, and we have to hope that patients will recognize the need to listen to what their doctors have to say 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 or becoming too involved in our health.