by Robert Coles
I’ve been through this before.
I call Lois to stand guard while Angie phones for an ambulance. Fifteen minutes later the rescue squad appears. By this time Kathy is up once again and hanging on to Lois. As I come into the room, she lurches toward me, clumsily hooking an arm around my neck. “You gotta send me to Sibley, David. I can’t go on like this.” On seeing the rescue squad, she squeezes my neck in a violent bear hug. “I love you, David. I love you. Don’t let them take me. Don’t let them take me.” Suddenly she flops back in the chair, and her seizure, or whatever it is, begins again.
Members of the rescue squad, dressed in the rubber suits of the fire department (in Washington, firefighters are the first to answer all emergency calls), have been watching through the door. “She did that last time,” says a tall white man with a mustache. “She can really put on a good one. She started scratchin’ my eyes out when she got to the ambulance. You call the police. I’m calling the ambulance off. We ain’t takin’ her again.”
Kathy is still shaking on the floor. “She needs to go to detox,” I say.
“Well, then, you call the police. That’s their department.”
Within a minute they’re gone, and I ask Angie to call the police.
Angie buzzes me right back. “They said if she’s having a seizure call the ambulance. They won’t take her if she’s having a seizure.”
Kathy soon passes out in the exam room, while I do my best to see other patients. Harlaney Pearson, the medical assistant working with me this afternoon, watches over Kathy. Fifteen minutes later Kathy decides she’ll come back “a little later” and stumbles out of the office.
One of the first things a doctor of poverty medicine gives up is the power the physician wields within the American medical system. Kathy Bartlow, my patient, has come into the office asking—at some level—for healing. But I have the power to accomplish next to nothing. I can spend hours with Kathy and yet be unable to provide what I would have considered in Minnesota the most basic medical care. The way the police and ambulance systems work in the inner city is not responsive to the needs of the poor—or their doctors—so I sometimes don’t even have the power to get my patient transported to the hospital. In Kathy’s particular case, I do have the authority to admit her to Sibley, but must use that authority sparingly for fear of alienating the institution or even having that privilege taken away. What can I offer Kathy Bartlow?
What did I offer Kathy Bartlow? What did she receive in this encounter that accomplished nothing? My undivided attention. My respect for her and for her heartrending struggle. My willingness to be there, to listen, and to offer what little I had: to call the ambulance, to protect her from immediate harm (at least for the few minutes she was with us), to care whether or not she got better. I find frequently that those are about the only things I can give my patients.
I spend an hour with Maggie Walker, a thirty-three-year-old heroin addict who desperately wants out. Her family has fallen apart, she is facing jail, and she is being threatened with having her children taken away from her. She is willing to “do anything to get clean,” but there is no inpatient drug treatment available in Washington for addicts who have no insurance or other means of payment. All that’s available is a public methadone clinic where Maggie would be seen for a few minutes daily as an outpatient to receive a narcotic substitute for the heroin she is already taking. As far as the rest of her life is concerned, she will remain in her drug-infested neighborhood; she will receive only minimal psychological help or group support to help her break her habit; she will get no practical assistance with the insurmountable problems that confront all poor people—lack of housing, security, work, cash. Even the methadone clinic, the sole program accessible to her, has a waiting list five weeks long. Although I’m her doctor, I can’t open the door she so desperately wants to walk through. She and I know full well—though neither of us articulates it—that in five weeks, when her appointment at the methadone clinic comes up, the moment will have passed, and she will be in no shape to take advantage of it. The time is now; but there is nothing I can do. I can only maintain hope (against our shared hopelessness), offer my presence, and try to introduce some modicum of concern into an environment in which it’s so often absent.
For all my supposed authority as a physician, I have only a little more power than my patients to improve the conditions under which they live. I may be able to diagnose Vaneida Thomas’s hypertension, but I can’t offer her an apartment, get her kids out of trouble with the police, get her a job, protect her from an enraged boyfriend, or provide her the tools for fashioning a new and healthier life. I can tell Donald Marshall why and how he should change his diet and take his insulin, but I can do nothing about the inadequate education that prevents him from understanding the diet, or about the economic obstacles that, in any case, make it impossible for him to buy the appropriate foods. I am powerless to affect his despair, his certainty that nothing a doctor could suggest would fundamentally alter his life or his options.
Lois and Teresa and I work for months with the Roberts family as they search for housing with the “assistance” of the city’s various programs for the homeless. Mr. Roberts is severely, often psychotically, depressed, in real need of hospitalization; Mrs. Roberts has a borderline-low IQ and life-threatening diabetes that—though she is only in her thirties—has wreaked havoc throughout her body. The family, homeless for months, has passed through the shelter system several times. Medical care has been virtually impossible. They come to the clinic infrequently, take their medicine sporadically, under stresses that make control of diabetes, to say nothing of depression, a fantasy.
Mr. Roberts finally finds housing for the family, but six weeks later he reports that the landlord refuses to fix a multitude of defeats that render the apartment almost uninhabitable. It is winter; windows are out, the plumbing doesn’t work, and the back door can’t be locked. The apartment has been broken into once already in their brief tenancy. When the Roberts family was at the city shelter, their fifteen-year-old daughter was sexually assaulted, so now Mr. Roberts stays awake all night to guard the unlockable back door. Mr. Roberts tells us that the landlord wants the family out, and it seems likely he is (illegally) refusing to maintain the apartment as a means of pressuring them to leave. No one within the city system responds to Mr. Roberts’s complaints or pleas for help, and within two months the family finds itself in the shelter system again, having “voluntarily” (according to the social worker’s report) left their apartment. During this time Mr. Roberts has given his wife insulin only from time to time, if at all, and she has been hospitalized at least three times for dangerously high blood sugar. I am as helpless as they are to find them housing or redress even a few of the injustices and humiliations they suffer.
On Belmont Street, health is not so much a question of disease. The strictly medical factors are rarely the most crucial to healing. While a patient’s lifestyle and environment are important elements to be considered in any medical evaluation, traditional medicine nevertheless finds its power by breaking problems down into their constituent parts, isolating individual issues and dealing with them as discrete clinical entities. But the complex, interrelated web of troubles that confront the poor make it impossible for me to treat the medical portion of their lives in isolation. I cannot address James Martin’s hypertension without worrying about his economic status (how is he going to fill his prescription?), his educational level (does he understand the need to take medicines—especially given their side effects—that will not, in the short run, seem to do anything for him?), or his family situation (how does the incarceration of his oldest son or the pregnancy of his daughter affect the hypertension?).
Within traditional medicine, the physician is the central player because he holds the keys to wellness. The doctor who chooses poverty medicine, however, not only finds his own power circumscribed by the same forces that dominate the lives of his patients but also quickly discovers that he is n
ot the most important player on the team. At any given time, it may be the nurse, the social worker, the nurses’ aide, the counselor, or the receptionist who offers what is most needed.
Defined by usual medical expectations, the “success rate” in our practice is abysmal, and inevitably so. As a physician, I know how to treat high blood pressure. It’s not difficult, but it requires regular office visits, a certain familiarity with basic medical language, patients’ compliance with treatment recommendations, money for medication, and the ability of patient and physician to work problems out collegially. When patient after patient returns to the clinic with blood pressure wildly out of control, it’s sometimes hard to remember that my patients’ medical failures are not always and necessarily my own professional failures.
I am speaking to a group of university medical students and faculty about the living and health conditions of my patients. I can sense that the stories are touching the hearts of many of the students and young doctors. During the question-and-answer period at the end of the session, a distinguished professor of pediatric surgery, garbed in a long white coat, rises and says earnestly, “I can only applaud your commitment to the poor, Dr. Hilfiker, but don’t you think it’s a waste of your professional education? Why should a person go through four years of medical school and at least three years of postgraduate hospital training to take care of problems that are so obviously social and societal in nature? It seems to me that your job might better be done by a social worker or nurse practitioner, while you used your talents more effectively elsewhere.”
The surgeon, I suspect, is trying to persuade his students and residents not to “waste” their own educations by choosing work as “useless” as what I do, but he articulates the doubts any doctor whose patients are poor people will experience: Am I throwing away my education and training, possibly letting my competence erode? What if—after years of this kind of practice—I get to the point where I am unqualified to be a “real doctor”?
In clearer moments we who practice poverty medicine are aware that the surgeon’s questions and our self-doubts are only part of the story. It takes all the medical judgment we possess to discern when to let go and when to press a homeless patient. It takes every bit of our medical authority to get such patients into the health care system. It takes as much medical knowledge as we can muster to diagnose across cultural barriers. But—since our work is so different from a doctor’s standard routine—it is easy, from the medical point of view, to mistake it for no work at all.
At a practical level, the usual professional support systems—continuing education, journals, conferences, societies, and academies—have not yet been developed to meet the needs of a physician who has decided to work with the poor. There are professional associations for gastroendoscopists and medical journals for ophthalmologists specializing solely in diseases of the retina, but there is no Academy of Poverty Doctors, no Journal of Poverty Medicine. There is no curriculum for poverty medicine: no one teaches “The Art of Medical Decision Making with Limited Funds” or “Medical Compromise within Cultural Strictures.” Medical practice in a community of poor people often seems a solitary specialty without research, common cause, or shared experience. I and my few partners are isolated professionally, with no way even to assess our own record.
In a culture that measures success and competence in dollars, it’s easy—when the stresses of practice become overwhelming—to feel that a relatively low salary is further proof of professional lack of worth. The same goes for prestige: As a physician for the poor, I know there will be no “professional advancement.” The bottom rung of the ladder is the same as the top rung: working as a clinic doctor, seeing patients day-to-day.
Looked at from one angle, the limitations this environment imposes require an almost indecent compromise of professional standards. From another perspective, however, we who practice in poor communities are in the process of creating new “medical” approaches to dilemmas the profession has too long ignored or mishandled. Most of my patients have already, after all, fared badly in the traditional medical system and are often disinclined to submit to standard procedures like interviews and examinations, not to speak of expensive tests for vague or minor complaints . . . or even for serious ones. A new art of caring is needed for the poor.
Mr. Tanner, an elderly gentleman with anemia and intermittent traces of blood in his stool over the past six months, arrives at the clinic today for a visit . . . but only because Teresa called him and insisted that he come in for follow-up. “No,” he says of the colonoscopy I’ve been recommending every visit for the last six months. “I think I’ll wait a little on that bowel test.” I explain for at least the third time the danger of bowel cancer, doing whatever I know how to impress on him that blood in the stool is a dangerous sign and that such a cancer would threaten his life. But he looks down at the floor, hems and haws, mumbles something under his breath. If he would even let me off the hook by refusing my request outright, it might be professionally easier; that is, he could help me create a more recognizably middle-class medical exchange, in which individual decision and individual responsibility—his and mine—are clearly delineated.
“I’ll need to think about it,” he says and smiles, almost mischievously. “Maybe I could check the tests again in a month or two. Maybe it’ll be gone.”
“Even if the stool samples are okay the next time,” I argue, “it’s important to have the colonoscopy because just a single stool sample with blood in it can be a sign of danger.”
He looks up triumphantly, “Well, I sure don’t want to get that bowel test if we don’t find no blood there. I’ll let you know.”
Six months from now we will have the same conversation....
The practice of poverty medicine often takes place in the absence of shared assumptions, which only increases the disorder and uncertainty. To my patients my questions must often seem unrelated to their primary concerns, while the history of their symptoms—easily the most important part of any evaluation—remains a mystery to me. When I am trying, for instance, to determine the likelihood of pregnancy or the significance of vaginal bleeding, I frequently ask a woman the date of her last menstrual period. The invariable answer is either “This month” or “Last month.” When I ask her to be more precise, she often seems confused by my question. It’s not really a matter of memory; my inquiry seems senseless to her. For many of the women in my practice, menstrual cycles are bound to the calendar months rather than to a cycle of so many weeks and days. A woman will sometimes come to the office worried because “my period came twice this month,” by which she means that the first menstrual period began on January 2 and the next on January 30. She will then be concerned because she “misses a period” during February. This simple difference in the way we understand things can usually be compensated for, but there are other, more complex gaps in communication that leave my patients feeling ignored or misunderstood.
Trust—that crucial ingredient between physician and patient—is often lacking in the sort of medicine I now practice. I want to make sure, for instance, that Tajuana Billins, a fifteen-year-old girl with symptoms of a serious pelvic infection, does not have a pregnancy in her fallopian tubes (a so-called ectopic pregnancy, which doctors sometimes mistake for a pelvic infection). I explain that we must determine whether she is pregnant and I ask her about her last menstrual period and her most recent episode of sexual intercourse. She tells me that her period came “last month,” but assures me that she has not had sex in over two months. Several minutes later, examining a specimen of her vaginal fluid under the microscope to check for venereal disease, I see sperm vigorously moving about. I return to ask again about her history of intercourse, and she resolutely asserts that she has not had intercourse in over two months, a story she sticks to even after I reemphasize the importance of the question.
Why is she lying to me? Perhaps, for reasons that I don’t begun to understand, her story isn’t a lie to her. Perhaps talking abou
t sex to a male, especially a white male, is worse than lying. Perhaps in her mind the consequences of opening the door to her personal life, even a crack, are too dire. Perhaps an overly strict or abusive home environment has made hiding her personal life a necessity. Perhaps it is just adolescence. A lot of possible explanations flood my mind, but are any of them correct? In the end, I go with my gut instinct (not always right, either): I decide against confronting her with what is so obviously untrue. I do not blame Tajuana; but our inability to communicate effectively, whatever the cause, leaves me with little reliable information on which to base either a diagnosis or a relationship.
In my Minnesota practice as well, of course, I was sometimes told incomplete or false stories. But my patient and I generally shared a common language, so that someone who did not want to reveal everything to me could nonetheless communicate her reluctance, and I could at least recognize the gaps in my own understanding. Or—when caught in an outright lie—a patient could find a way to backtrack, to give me enough of the truth to get me off her case.
Tajuana and I, however, speak such different languages that I’m far from certain about the real nature of her disease. I know there is something else wrong, something going on behind the present complaint, but here—unlike in my middle-class clinic—my intuition is of minimal value. Because my patients and I face each other across barriers of culture and language, I usually cannot “get inside” their heads to find out what is wrong.
It is not possible to discuss poverty medicine without talking about yet another formidable barrier—that of racial difference. While in absolute numbers most poor people in our country are white, African Americans and Hispanics are three times more likely than whites to be poor, and the inner-city patient is likely to be a person of color. Yet poverty medicine—at least in urban areas—is largely practiced by white professionals. In medicine, as in so many other areas of American life, the person with power is still white; the person needing help, black or Hispanic.