Investigating the Root Causes of Illness

Effective care for most illnesses requires understanding the social conditions of one’s patients, writes Paul Farmer in The Upstream Doctors: Medical Innovators Track Sickness to its Source, a new TED book by Dr. Rishi Manchanda. 

At the end of almost a decade spent in teaching hospitals and clinics, most (we hope all) physicians have honed their clinical acumen by focusing on the care of the patient who is right in front of them. Perhaps this is as it should be: as patients, we don’t want our doctors (or nurses or social workers) distracted by “outside” considerations such as the suffering or concerns of other patients not there in the exam room or, heaven forfend, by abstractions such as the extra-personal social forces that place people in harm’s way. We want the doctor focused on us, by bringing expertise and attention to our specific “illness episode” and even to our minor aches and pains. That’s what we want: laser-like focus, to use another term from the medical profession, on our own “chief complaint.”

Or do we? What if most of our aches and pains and many of our serious ailments come largely from those outside forces and abstractions? What if we want to prevent disease or complications of it by altering our risk of poor outcomes (not just death, but predictable or unforeseen complications of the chronic conditions and growing infirmity that most of us will one day endure)? What if we acknowledge that we live not only in bodies but in families, homes (mostly), neighborhoods, and cities? What if our lives outside of the clinic or hospital are often difficult and even, for some people and at some times, almost unendurable? What if our clinical diagnoses are not our chief complaints?

Dr. Rishi Manchanda’s TED Book addresses all of these questions with clarity and vision and humility. His vision is informed by long experience, illuminated by the experience of his patients, and solidly buttressed by a great deal of data. The book’s title is borrowed from a well-known parable. Three friends come upon a terrifying scene: as a broad and swift river approaches a waterfall, they see floundering children being swept by in the current, heading towards the cataract. The three friends do the right thing: they jump in and save the drowning children. But the rescuers’ horror is compounded when more kids keep coming down the river. Finally, one of the three starts swimming away from the struggling children. Over the objections of her fellow Samaritans, panicked as they continue their heroic rescues, she swims upstream “to figure out what or who is throwing these kids in the water.” 

Understanding more about the causes of the causes will help make medicine matter, help make it better, in part because it forces us to be better listeners.

It’s not that Manchanda is arguing in these pages that we don’t need to save all those already swept into perilous waters. It’s rather, he argues, that we need to divert some of our attention and resources—perhaps more than a third of them—to addressing the root causes of that peril. In other words, we need our physicians to be technically competent, excellent listeners, and able to understand pathogenesis—especially when sickness is not caused, or caused solely, by a microbe or an accident or a readily identified genetic mutation. Make no mistake: Most sickness in this world, whether in South Central Los Angeles or in my workplaces of Boston and rural Haiti, is caused not by a single event or pathological process but by many of them in concert. And most of these causes are to be found far upstream of the etiologies we are taught to seek in medical school and in teaching hospitals.

These “causes of the causes” are largely social and environmental ones, as laid out in the clear prose of Dr. Manchanda’s book. Even when etiology is more downstream, effective care for most illness requires understanding the social conditions of one’s patients. Take, for example, the case of Veronica, one of his patients from South Central Los Angeles. In clinical parlance and practice, the story would go something like this: Veronica, 33 years old, presented with recurrent and worsening headaches; these were accompanied by fatigue and malaise. The headaches interfered increasingly with her “activities of daily living.” She sought care for her symptoms in an emergency room, where she was “worked-up” for recurrent headache, given medication for pain, and told to return if she did not get better. She returned twice, still in pain, and subsequent work-up included a CT scan, routine blood tests, and a lumbar puncture. These revealed nothing. One doctor, we learn, suggested that Veronica “was exaggerating her pain simply to get narcotics.” The emergency room staff, probably frustrated, referred her back to a primary-care doctor, which is where she started in the first place. Still her headaches persisted, she took more sick days, and felt she wasn’t doing enough for her young children; she worried, in fact, about losing her job. One of these three ER visits alone cost more than her monthly rent.

Study after study, in city after city, has shown us that it is very expensive to give mediocre medical care to poor or near-poor people living in a rich country.

When Veronica came to his clinic, an “upstreamist” approach led Dr. Manchanda and his colleagues to do a different kind of diagnostic work-up and to propose a different kind of treatment plan. With little probing, Veronica, still in pain and by now exasperated, allowed that she lived in an apartment that was damp, infested by roaches, and full of mold; she couldn’t afford to move and the landlord wasn’t about to repair the leaky plumbing of her small, ground-floor apartment. The diagnosis, Manchanda thought, was migraine headache triggered by chronic allergies and complicated by sinus congestion. Allergens in the damp apartment probably also accounted for her son’s frightening asthma flares, another source of anxiety for Veronica.

So far so good: any competent physician or nurse ought to be able to make the diagnosis. Most could do so without advanced medical training; many mothers could, certainly. But the upstreamist approach is not merely to inquire about the causes of the causes; it also calls for addressing them. The clinic in which Dr. Manchanda practiced as an upstreamist works with community health workers and tenants’ rights groups which, in essence, extend the clinic right into their patients’ homes (if they have them) and lives. The medical staff connected Veronica to a community health worker, who could visit her at home and help make sure she was able to obtain and take the medications likely to give her short-term relief from her symptoms. That’s one of the things that community health workers do—or would do if only we had enough of them around. As for her housing conditions, another partnership came into play: a tenants’ rights advocacy group, long active in Veronica’s neighborhood, petitioned the landlord—this time with a doctor’s note in hand—to make the improvements that were always part of his contractual agreements and were in keeping with local building codes. Veronica got better, as did her son. She also stopped using the emergency room for primary care; from then on, most of her care occurred right in her home or in a nearby clinic termed a “patient-centered home.”

It’s not that Dr. Manchanda and his colleagues were not involved in her ongoing care but rather that, in an upstreamist vision, Dr. Manchanda’s colleagues necessarily include community health workers and advocacy groups and citizens concerned to promote healthy neighborhoods. This approach works with, not on, patients. Together, Veronica and her new partners in care, from clinic staff to community health workers and other advocates, improved the quality of that care, increased the effectiveness of her physician, and lessened her utilization of high-cost but ultimately ineffective, for her, emergency services. Working together, this team also improved the quality of Veronica’s housing, lessened her son’s affliction, and thereby broke a vicious cycle all physicians see far too often: study after study, in city after city, has shown us that it is very expensive to give mediocre medical care to poor or near-poor people living in a rich country. One might even argue that this upstream approach improved the quality of her doctor’s life, too.

Decreased costs and better outcomes for all concerned: if that’s not a formula for value, I don’t know what is. But a better understanding of efficiency, effectiveness, and value in health care is not the only reason to adopt upstreamist approaches or to read a book about them. Understanding more about the causes of the causes will help make medicine matter, help make it better, in part because it forces us to be better listeners. Bertolt Brecht’s haunting verse, “A Worker’s Speech to a Doctor,” published the better part of a century ago, tells a story all too similar to Veronica’s:

When we come to you
Our rags are torn off us
And you listen all over our naked body.
As to the cause of our illness
One glance at our rags would
Tell you more. It is the same cause that wears out
Our bodies and our clothes.
The pain in our shoulder comes
You say, from the damp; and this is also the reason
For the stain on the wall of our flat.
So tell us:
Where does the damp come from?

It can be argued, and often is, that controlling the dampness and mold in Veronica’s flat is not the job of a physician. But to argue that such understanding of causality is not the job of an effective health care system is wrong-headed for a host of clinical, moral, and economic reasons. Explaining these reasons is the primary task of Manchanda’s book, just as it is the primary task of social medicine and its many component disciplines. Addressing the causes and consequences is the primary task of all practitioners, whether based in hospitals or clinics or communities. Seeing them addressed, upstream and downstream, is very often the primary concern of our patients.

These are not new insights, as Brecht’s poem suggests, but as our nation’s health care costs continue to spiral out of control without leading to the expected and wished-for results—looking at the usual indicators of population health, the United States lags far behind most wealthy countries, even though we spend more than any other—these insights are more urgently needed than ever. In Dr. Manchanda’s words, our current standard of care isn’t working well for those who need it most. It’s not that modern medicine isn’t living up to our hopes for new diagnostic and therapeutic tools, although we could, if his prescriptions were heeded, always use more of those. It’s rather that medicine, as it is now practiced, has sharply defined boundaries. These borders keep us from understanding ill health and from doing our jobs well. All the technological fixes in the world are not going to repair our broken health system, not if helping the Veronicas of our world matter to those who now debate its future.

Continue reading the full essay.

Dr. Paul Farmer, physician and anthropologist, is chief strategist and co-founder of Partners In Health, Kolokotrones University Professor and chair of the Department of Global Health and Social Medicine at Harvard Medical School, and chief of the Division of Global Health Equity at Brigham and Women’s Hospital in Boston. He also serves as U.N. Special Adviser to the Secretary-General on Community-based Medicine and Lessons from Haiti. Dr. Farmer has written extensively on health, human rights, and the consequences of social inequality. His most recent book is To Repair the World: Paul Farmer Speaks to the Next Generation.