The small waiting room was packed with young mothers holding teary-eyed toddlers, older folks with resting tremors and oxygen tanks, and an obese man just stepping in from a smoke. I’m a family physician about to share my afternoon with each of them, in a working-class western Pennsylvania town. Walking quickly through the room on my way to the water cooler, I usually averted my gaze to avoid a not-so-private waiting room conversation with anyone. However, on this Wednesday afternoon I stopped to stare at the television screen not silently suspended above a pregnant woman snuggling her sniffling son.
It was January 13, 2010. Haiti was imploding and crumbling in front of us, courtesy of CNN. Pictures of crushed bodies, partial glimpses of bloody limbs, and videos of screaming family members filled the screen. A steady stream of ticker-tape text gave up-to-the-moment information on the projected death toll, warnings of aftershocks, and reactions from around the globe. Descriptions like “natural war zone” did little to humanize the enormity of devastation unfolding before us.
Then the screen changed abruptly, faces of bantering politicians serving as a backdrop for the caption “health care reform in serious jeopardy.” These two stories were related somehow, but there was little time to reflect on their shared meaning as I left the waiting room to resume dealing with the afternoon’s onslaught.
As the day dragged on, I became more distracted by thoughts of the immensity of the catastrophe in Haiti, and increasingly moved by the efforts of hundreds of international volunteers who were traveling to Haiti to help those trapped in the rubble. What motivated these health care workers and other professionals to put their own lives in danger to help others? Why did they care, and why should we? And why should we care about health care reform efforts failing yet again, when polls tell us that so many Americans are “satisfied” with their health care plan?
I moved on through the afternoon, bothered by these questions as I addressed more immediate concerns. My daily menu of patient fare had not changed for years: folks suffering from inadequately controlled diabetes, emphysema worsened by ongoing cigarette smoking, depression partially managed with medications but not addressed by psychotherapy, and pregnancies complicated by high blood pressure. Patients with ear infections and abscesses that needed to be drained were added to spice up the day’s schedule.
Using an electronic health record, touted as one of the cornerstones of efficiency and quality improvement for the health care system of the future, I dutifully recorded the care of my patients in medical shorthand. The data entered into these electronic records may one day help me improve the quality of care I deliver, but today the greatest accomplishment of this technology is to maximize billing and coding for patient care “services.” The billing of medical services is a science unto itself, replete with rules, regulations, acronyms, and specialized lingo, and it demands a set of skills for which most doctors receive little formal training.
For instance, the fifty-seven-year-old diabetic patient with whom I spent twenty minutes discussing her inability to afford her sugar testing strips, her depression, and her failing marriage would be “coded” as a “99214” (designating her status as an “established” patient of “moderate complexity”). The computer program reminded me to add “modifiers” that would increase the billing and reimbursement I could obtain if the patient were fortunate enough to be insured. Discussing her alcohol use qualified for a “modifier” that paid me for counseling her to reduce the risks of alcohol abuse. Draining her abscess required another “modifier” that billed for the procedure itself.
Of course, the minutes spent scrolling through the various software panels and sifting through thousands of codes to submit this bill cost me precious patient care time. However, I am reminded by our practice manager that “if there is no margin, there is no mission” — referring to the financial sustainability we must maintain so that we can continue to deliver care, much of it not reimbursed, to the many patients in our practice who are uninsured or underinsured. Today more than 72 million Americans, nearly one out of every four of us, fall into this category.
As I finished the last appointment of the day and added the modifiers for the care I had delivered, I thought about the fundamental question of what motivates us to care for others — whether those who face overwhelming tragedy in a faraway land, or those silently suffering in our own neighborhoods. As a primary care physician, I am incentivized professionally and financially to provide medically appropriate “care” for others. On a personal level, I care for others using a somewhat different set of modifiers and qualifiers, and I wondered about the mental mathematics that sum up my ability to care. Are there ways to incentivize people to care more for their neighbors, here or around the world?
Many people would find a picture of a suffering earthquake victim sufficiently compelling to move them to action—donating money, time, or talent. Fund-raising experts know that depictions of single victims are often more effective at motivating people to care than images showing multiple victims, because the viewer feels less overwhelmed and more empowered to care for a smaller number of people. How powerful are “modifiers” to care related to numbers of victims, their location, or the cause of the devastation being a natural disaster? A startling statistic from CNN flashes across the TV screen: 200,000 estimated dead under the rubble of Haiti. The sudden, unpredictable death and destruction contrasts with the estimated 205,000 lives lost in the United States due to lack of health insurance in the four and a half years since Hurricane Katrina.
The Stories Of Our Neighbors
This loss of life at home is no less devastating to me than the catastrophe in Haiti. Daily I take care of patients who become these statistics, like the forty-eight-year-old construction worker and father of two with end-stage cancer diagnosed too late, after he couldn’t afford to see doctors for over a year for his severe abdominal pain. Or the forty-six-year-old adult literacy teacher and father of three with coronary artery disease and poorly controlled diabetes, suffering with crushing chest pain and worsening heart problems because he can’t afford his insulin and blood pressure medications.
Watching my patients sicken and die within the confines of our exclusionary, wasteful health care system makes me angry. What is even worse is that these patients have accepted with tired resignation that their lives have been cut short because they could not afford health care — demonstrating how thoroughly Americans have “bought” into the concept of health care as a discretionary commodity. How can I empower patients to care enough about changing our health care system, to demand more accountability and accessibility?
If only the personal narratives of these and many other similarly neglected patients were able to modify our willingness to care for others. These folks live among us, are our neighbors, coworkers, relatives, and friends, and we could easily — by misfortune, accident, or untimely diagnosis — become one of them. But maybe their stories aren’t dramatic enough.
Harrowing stories from Haiti, describing the devastation as a tragedy of “biblical” proportions, also depict heroic volunteers helping the wounded and grieving. Physicians and nurses from around the globe performing life-saving amputations and surgeries around the clock. Rescue workers lifting survivors buried beneath the crumbled remains of tenements and school buildings. A teenager pulled alive from the rubble after sixteen days is a powerful reminder of our extraordinary will to live. These accounts humanize and dramatize suffering and allow us to connect with others with whom we may have little in common except DNA.. Their stories remind us that natural disasters, accidents, and medical catastrophes are equal-opportunity contingencies to which we are all vulnerable, and that one day we too may need acts of common heroism to help us.
Even though the aftershocks have diminished, the devastation in Haiti continues because rebuilding and caring for the millions of displaced and disabled people will not happen quickly. Lacking a stable health care and political infrastructure, buried in poverty, thousands more Haitians will sicken and die unnecessarily in the coming months and years.
Unfortunately, a different lack of health care infrastructure exists in our country, despite annual spending of 2.7 trillion dollars, or 17 percent of our gross domestic product (GDP), on health care. That half of all bankruptcies in the United States result from medical catastrophe is no surprise in light of a private health insurance system that denies coverage to people with preexisting conditions and spends more than 30 cents of every health care dollar on administrative overhead, rather than on health care delivery. The disparity between health care haves and have-nots is as striking as it is demoralizing.
On the same afternoon that I share a family’s joy on behalf of an insured, sixty-five-year-old patient of mine who received a heart transplant, I walk into the next room to discuss hospice plans with a fifty-two-year-old uninsured gentleman who had suffered silently for two years without medical attention for painful urinary tract problems, only to be diagnosed with end-stage prostate cancer. I see these stark contrasts in care and outcomes on a daily basis, but I can never accept them.
What Are The Costs Of Care?
Many negative modifiers to care are insidious and buried in our subconscious, determining under what circumstances someone “deserves” care. What does caring cost me on an individual and societal level? The earthquake in Haiti exposed not only the fragility and evanescence of human enterprise, but also the necessity of charitable responses driven by the motivation to do “the right thing.” But when does the cost of doing right, of helping others, become too great?
Despite the current financial crisis, Americans have generously given hundreds of millions of dollars toward Haiti relief through federal grants and individual donations. Voices in opposition to this allocation of resources have been few. However, the debate on health care reform has highlighted a stern opposition among some politicians who argue that taxpayers shouldn’t shoulder the burden of health care costs, which they say threatens to create a “socialized” system of medicine. How can we remind Americans that we all already pay for health care in this country — through our taxes, lower wages, and increasing individual contributions toward health insurance premiums, along with less state funding for public education as money is diverted to pay for Medicaid? Our failure to demand more quality, more accessibility, and less administrative waste from our taxpayer-funded health care system plays into the hands of those who are already profiting magnificently from this fragmented “system” of care. Don’t we deserve better?
Perhaps we should really ask who “deserves” our care. People who are unemployed, receive welfare benefits, suffer from substance abuse, or are criminals or illegal aliens are often deemed “undeserving” of care, even deserving of bad outcomes. A recent letter by an emergency room physician questioned the “entitlement” of a poor, unemployed woman receiving Medicaid and food stamps because she had tattoos and smoked cigarettes. No doubt many Americans share the views this physician expressed about a culture of “irresponsible spending,” implicitly demanding a means test by which people who truly deserve care can be identified.
What about insured people who by accident of birth inherited fortunes and never had to work, who presided over financial scandals or benefited from environmental destruction or the exploitation of natural resources? Are they any more deserving of health care? Are they not also paradigmatic of a culture of irresponsibility?
Fortunately, religious and ethical considerations motivate us to be caring toward all of these individuals, even the most socially marginalized. How we judge others says a lot more about ourselves than about the subjects of our judgment. What do these modifiers tell us about our own values? As physicians who take an oath of responsibility, we are called on professionally to care, to set aside judgment, and to advocate in the best interests of our patients. Has our medical community forgotten these values? Or has the recitation of the Hippocratic oath become a hollow exercise in sentimentality?
In primary care and psychiatry, we use a “harm reduction model” to care for patients with complicated medical and behavioral problems, striving to palliate their conditions and improve the quality of life for them and their families. Using a nonjudgmental approach, we acknowledge that a cure may not be possible, and we celebrate small victories with our patients — such as cutting down on tobacco use or losing a few pounds — empowering them to improve even though we don’t expect perfection. We need to apply the same kind of pragmatic expectations to health care reform, focusing on the major themes of accessibility, cost control, and better quality of care, even as we expect that the process will be painful, like any necessary change.
The recently passed health care reform legislation is a significant first step toward increasing accessibility and ending deplorable market-driven private insurance tactics such as rescission. However, health care finance still needs substantial ongoing reform; with a growing and aging population, the proposed Medicare cuts will be powerful disincentives for physicians and hospitals to provide the quality care that patients of any age deserve . We still need to fundamentally restructure how we pay for health care, an issue that remains unaddressed. The addition of a public option would have enhanced competition among private insurance plans to cut unnecessary administrative costs, but its demise in the final negotiations that led to passage of the reform bill was an unfortunate concession to an insurance industry laden with conflicts of interest. Thoughtful consideration of a single-payer plan is still essential to the creation of a truly sustainable health care system.
Caring Is Good For All Of Us
I’m moved by the outpouring of concern for the victims of the earthquake in Haiti because it demonstrates the caring, better side of our humanity. I’m disappointed by the ongoing public opposition to health care reform because it highlights the fearful, darker side of human nature. Despite economic and health policy evidence that supports the need for fundamental change in our health care system, many Americans seem unable to accept or embrace this momentous opportunity. Before passage of the reform legislation, cynics had claimed that moral arguments could not move the public to bring about meaningful, necessary change in our health care system. Out of fear of the unknown, we had settled for an established, inequitable, and wasteful present, with more than 45,000 people dying each year because of lack of health insurance. Now that we have taken an important first step, we need to continue our efforts to transform the system, to strive as a society toward a brighter future in which health care will be accessible to all, and sustainable for years to come.
Why should we care about ongoing health care reform? And why should we continue to care about Haiti, or — for that matter — the victims of recent earthquakes in Chile and China, West Virginia coal miners crushed in cave-ins, or oil-rig workers lost off the Louisiana coast? Because it is time to acknowledge the selfish part of caring: that we care for others because caring benefits us, too; that any altruistic act ultimately benefits the actor in some small way, and not just the beneficiary. Because in the end, we care for others knowing that we will need care from them in the future, on both an individual and a societal level. Confucius, Rabbi Hillel, Jesus, Muhammad, and secular humanists have all said it: we should treat others the way we would want them to treat us. We are all part of a larger community, and we bear responsibility for others in this fundamental act of connection.
We must realize that doing the “right” thing in health care, in Haiti or in these United States, is more than a human interest story. It is ultimately in our own best interest that health care be treasured as a human right, and bestowed upon others as we would have it bestowed upon us.