Building a Fairer, Healthier World

The day my mother was diagnosed with advanced cancer was the day I began my long run as a patient. The unwelcome news upended my life and sucked all my energies into an immediate and fierce fight for her survival. As I struggled to regain my equilibrium, this nugget coined by eminent scholar W. Edwards Deming caught my attention: “In God we trust, all others must bring data.” So, I set about to gather all the “data” I could.

I scoured medical journals, consulted widely and internationally, and obtained numerous medical and surgical opinions. It was a gargantuan effort. It was a battle like no other. A battle with cancer that, on average, extinguishes its victims in two to three years. I am beyond grateful to be by my mother’s side. We’ve been the fortunate recipient of care by a world-class team of doctors, but in the context of this piece, one healthcare system stands out.

The U.S. healthcare system has more than its fair share of dysfunction. I have been a patient and a doctor and have seen care from both sides. Believe me, everyone that goes into healthcare really means well. I mean truly. But we who work in it are also unwitting agents of the system that so often does not serve. Why? There is a pretty easy answer to that question and it explains a lot. Healthcare was designed with diseases, not people at its center. Which is to say it was badly designed. And nowhere are the effects of bad design more heartbreaking or the opportunity for a good design more compelling than in a developed nation like the United States. 

My purpose is to reach out across disciplines and invite design thinking into this big conversation. To bring intention and creativity to the experience of suffering in general. On the systems side, so much suffering is unnecessary. But this brand of suffering in the U.S. healthcare system is made up and we can change it. My objective is to make the healthcare system sensitive to this fundamental distinction between necessary and unnecessary suffering. Most hospitals intend to assault our senses and the most we might hope for within those walls is numbness. Anesthetic not aesthetic.

Working in the US healthcare system for almost two decades, and having been trained at some of America’s best hospitals, I have had the opportunity to learn from an impressive number of amazing clinicians. Now is the time to create something new, something vital. The key ingredients are policies, education, and training, systems, bricks, and motor. Allopathic reductionism which most of us are trained in manages and treats chronic diseases, but does not look for a cause or cure.

We have tons of input for designers of all hues to work with. Little details are not little. We have to provide sustenance on several levels. We have to value patients’ rights, prioritize change and be forthcoming with patient alternatives. We have to treat one another as humans, not doctors and patients. Rather than practicing what our medical training has trained us, we need to focus not on disease-centered care but on a patient-centered/human-centered model of care.

While we don’t take vows within our doctor-patient relationships, they are still significant partnerships—in sickness and in health. As you evaluate your relationship with your current doctor, pay attention to the fact that your opinions are welcome and that their ego is not getting in the way. Make sure your alternative treatments are being addressed. Find someone more engaging and draw the line if your personalities don’t mesh. Ordering tests without an explanation can be an acceptable answer from a parent to a child, but not from a doctor to a patient. Until we can shift the focus from patient satisfaction to patient safety, healthcare workers will continue to rearrange deck chairs on the Titanic.  

Many of us—I’m holding a giant mirror up to members of my own profession—have a bothersome tendency to present our perspectives like a male turkey displaying his snood: arrogant, swaggering, self-important. Given our overstuffed education, some propensity for hubris is perhaps understandable, albeit no less forgivable. But a few labor so hard, so intensively, and for so long to acquire vast stores of specialized knowledge and experience. Like most, I employ that expertise daily to generate a stream of considered opinions, perpetually open to correction in the process of plotting the best care for my patients.