In medicine, we speak of “seeing patients” when we are rounding in the hospital or caring for those who come to our clinics. But what about those people who may be sick but do not seek care? What is our responsibility to the patients we do not see?
This question takes on greater urgency in the current political climate, as patients face the threat of losing health insurance. Renewed efforts to repeal and replace the Affordable Care Act leave millions wondering whether they will be covered.
For me, as a physician practicing in the safety net, abstract numbers evoke the very real stories of my uninsured patients. One of my patients, whom I’ll call Elsa, had not seen a doctor since immigrating to the United States 15 years ago. That abruptly changed one morning: She awoke to find the room spinning around her and, terrifyingly, she could not articulate the words to explain to her husband what was going on. She was having a stroke.
There are many reasons that patients like Elsa may not seek care — until they have no choice. Although she felt no symptoms before her stroke, Elsa was one of about 13 million U.S. adults with undiagnosed high blood pressure. I wondered if making her aware of her blood pressure would have been enough to avoid her suffering.
But even if high blood pressure may sit atop the list of problems I write out, from his or her perspective it may not crack the top five. Food security, job stability, child care and affordable housing understandably feel more urgent. Time and again, I have learned that taking care of my patients starts by trying to walk a mile in their shoes.
Why patients may not seek care
Sometimes, forgoing care is a symptom of social isolation. I asked another patient of mine — whom I had recently diagnosed with uncontrolled, likely longstanding diabetes — about his eating habits. I learned that in his routine, he would go for days at a time without interacting with another person; he did not have any family nearby and worked from his home computer.
Aside from deterring access to care, loneliness and social isolation have direct effects on health. One review of 148 studies showed that the influence of social relationships on the risk of death was comparable with risk factors such as obesity and alcohol use.
In other cases, the health care system must take responsibility for barriers to patients that we ourselves erect. Beyond costs, structural barriers include inadequate language interpretation services and the assumption of health literacy when conveying information. Meanwhile, historical inequities often underlie wary attitudes toward health care.
Dr. Mary Bassett, the health commissioner of New York City, has spoken plainly about this: “We must explicitly and unapologetically name racism in our work to protect and promote health…We must deepen our analysis of racial oppression, which means remembering some uncomfortable truths about our shared history.”
In the same vein, new immigration policies may have a chilling effect on the willingness of people like Elsa to see a doctor, if they perceive negative repercussions for themselves or their families.
Many patients with the greatest unmet needs are therefore marginalized, with only glancing interactions with the health system — or none at all, in the most wrenching cases of suicide, drug overdose and other chronic illnesses that end in catastrophe.
When they do seek care, it is sporadic. They may show up in the ER, but not to a primary care follow-up appointment. If an ensuing phone call goes unanswered, or their phone is out of service, we label them as “lost to follow-up” and move on to the next patient on the list.
What needs to change
Doing better by these patients will require moving the locus of accountability for health further into communities. It means bringing more of a public health mindset to health care; that is, not reflexively restricting our purview to those who happen to cross our clinic’s threshold.
Hospitals and health systems must have the humility to reach across boundaries and partner with local institutions that are sometimes more trusted, and often more relevant, in people’s daily lives, including churches, schools, food pantries and parks.
In one recent example, the 54 branches of the Free Library of Philadelphia were shown to be vital community nodes for health-related services like literacy programs, healthy eating initiatives, job fairs and food preparation courses. Public libraries are particular safe havens for those experiencing mental illness, substance use disorders and homelessness — as well as youth and recent immigrants. We should consider how the these locations are therefore already a part of our health ecosystem.
Doctors and other clinicians may balk at trying to take care of the patients we do not see. After all, with the harried pace set by the 15-minute office visit, it is hard enough to keep up with the patients we do see. But the goal is not to schedule doctor’s appointments for all library-goers, but rather to equip them to be better stewards of their own health, which sometimes involves health care providers, sometimes not. While physicians can’t do it alone, we can lend our voices to those calling for greater outreach, less stigma and protection of the most vulnerable.
Prevention, not regression
In Elsa’s case, when she had her stroke, she was rushed to the ER and received excellent care from the hospital team. Neurologists treated the blocked vessels in her brain and diagnosed her with a narrowed heart valve and high blood pressure.
As a doctor in a system that accepts all patients, regardless of ability to pay, I was proud to be a part of her follow-up care. She underwent heart valve surgery, and we put her on blood thinners and blood pressure medicines to reduce her risk of another stroke. Her rehabilitation, all things considered, was going well. The health care system had reacted to Elsa’s crisis with swift competence.
At our last clinic visit, my mind turned to what could have been done to prevent her stroke. But the chances to intervene were too few. She and her husband made a living as bottle-pickers; they spent hours every day sifting through trash for bottles to recycle. Elsa told me they made enough money to get by, since they lived with her nephew. But visiting me in clinic, not to mention a cardiologist, neurologist and physical therapist, cost her time and thus cash.
And so for every Elsa who walks into our clinic I know there is another patient we do not see.
With health coverage for millions of Americans in limbo, we must speak out and organize just to keep seeing the many patients who have been newly brought into care. And at the same time, we must develop better ways to find and support people like Elsa — even before we see them as patients.