Research Report from Haiti

Beyond Human Rights Ideals:

Physicians Confront Rationing Decisions

By David Ubogy

Ivens Saint-Jean (a pseudonym) a 12 year old boy from the mountains of rural Haiti, has grown increasingly fatigued and he’s developed marked swelling of his abdomen. After an attempted cure by the local Vodou practitioner is unsuccessful, he is carried to the hospital by his father, and attended to by a pediatrician from the United States. Ivens is significantly jaundiced, and has a large amount of ascites (free fluid surrounding the abdominal organs), which has begun to affect his ability to breathe. The physician soon completes those limited diagnostic tests available at the hospital (far less than he knows is available in the developed world), which prove unrevealing. Because therapy for tuberculosis (TB) is one of the few treatments available, in desperation, TB therapy is begun, despite initial indications that Ivens is not experiencing an unusual form of abdominal TB. With a needle, fluid is drawn off from his abdomen with a needle, and his breathing is temporarily eased. Initially he appears to respond to therapy with more energy. Despite the language barrier, over several weeks, Ivens and his doctor develop a friendship , with the boy walking around the hospital grasping the doctor’s hand, speaking continuously in Kreyol, and repeatedly demanding “un Coka.” Ivens smiles as he makes the request, because he knows from many refusals, that the drink will not be forthcoming.

But after a month, Ivens’ TB tests are definitively negative, and the initial improvement in his fatigue, in retrospect likely due to nutritious hospital food, has ended. With nothing further to offer medically, the pediatrician takes Ivens’ father aside and offers him money to either pay for an abdominal CT scan in the capital (which would likely establish the feared diagnosis of malignancy, for which any therapy would be unavailable), or that same amount of money could instead be used for food and pain medication after Ivens’ father takes his son home to die. The choice is easy to make. Father and son leave the hospital, Ivens with a new yarn bracelet as a farewell gift and triumphantly carrying a bottle of “Coka,” having at long last worn down the defenses of his doctor.

Two months later, another patient visiting from Ivens’ village informs the pediatrician that Ivens has died. He seemed to have been in pain and to have had difficulty breathing before he passed.

This true story is all too common in the setting of Haiti. Founded by former French slaves after a bloody war 200 years ago, Haiti is by most accounts the poorest country in the Western hemisphere, with a per capita income of $425, a life expectancy of 49 years, an infant mortality rate of 79/1000 (U.S. Department of State, 2005) and a severe burden of disease including AIDS, TB, malaria, diarrheal diseases, and malnutrition (Farmer, 1999). Both general and as well as medical infrastructure are severely underdeveloped, with large percentages of the population suffering from chronic food insecurity, lack of access to potable water, and no access to healthcare (The United Nations World Food Programme, 2005). When we speak of lack of healthcare access in the United States, we generally mean the uninsured who lack a primary physician, who may be unable to afford medications for chronic conditions, and who obtain sub-standard care in the emergency room. The Haitian government estimates that 40% of the population has absolutely no access to healthcare professionals, medications, or facilities (Pan American Health Organization, 2006).

At the rural NGO Hôpital Albert Schweitzer (HAS), physicians are faced with a triple dilemma of desperately ill patients, grossly inadequate resources, and a financially insolvent institution that severely curtails services. Traditionally focused on the doctor-patient dyad, physicians at HAS find themselves balancing medical needs of the patient in front of them against the financial survival of their institution.

Paul Farmer, a physician-anthropologist who himself practices in Haiti, has called for healthcare to be treated as a human right (Farmer, 1999). No less than the United Nations has called for the same, with article 25 of the Universal Declaration of Humans Rights stating:

Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. (United Nations, 1948)

Implicit in these exhortations is that rationing decisions be made only after resources have been distributed so as to meet equally the needs of all. At HAS, real-world rationing decisions are regularly made in ways that trump laudable but unattainable human rights ideals.

To examine how this dilemma is reconciled at the individual provider level, nineteen physicians were interviewed at HAS. The subjects represented a mix of nationalities (Haitian, American, Indian, Swiss) and specialties (surgery, pediatrics, medicine, OB/GYN, public health). In addition to examining those contradictions inherent in conceptualizing healthcare as a right even as rationing decisions are made, categorical differences between Haitian and expatriate physicians were analyzed.

All of the study subjects believed that healthcare either was or should be treated as a human right; all were therefore caught in an unavoidable ethical dilemma. Several strategies were used to address the dilemma, as illustrated by the following interview excerpts. Some physicians preferred to focus exclusively on the needs of the individual patient, effectively denying the dilemma.

I have a patient [who] needs an operation on the heart. And I know we can’t do it here. And I know that it costs lots of energy and lots of money to organize something for him. But, I have seen this patient so many times and I’m trying to do something, knowing that it’s crazy. Yeah, he has hope, and why shouldn’t I try?

Other physicians acknowledge the conflict, but freely violated institutional policy to favor the individual patient.

Yes, I have done that many times. If they were poor and they needed healthcare, yeah. I did it often. For the blood, there’s a lot of patients that come with nobody. They can’t give their own blood to get blood. And they don’t have the money to pay for the blood, which is an option people with money have. Also, when the really poor people come in, their family members are usually quite poor too and quite anemic. You can just look at them and know. Do they have shoes? How are they dressed? You can tell someone that’s from the mountains. You can tell really just by looking at them, the whole picture.

Such cases of individualized “exception-making” were commonly justified by implicitly invoking justice.

I do have a big problem when the poor come to us and we turn them away. My view on this is well known to the Board. It’s well known to [the Medical Director]. It’s well known to anyone that has spoken with me, that I have a problem with withholding care to these people that otherwise would not be able to get it.

Justice was alternatively used by another physician to explain rationing.

You have to draw a line, to be able to work within your garden. If you don’t do that, those people who are in the garden don’t get good care properly anymore. So for example, those who are more wealthy, come from St. Marc, with the cars, with [their] cell phones. Do they have the same right for the treatment as our poor people in the Artibonite Valley? Sometimes it’s artificial, but mostly I think richer people coming from areas like St. Marc, even Port-au-Prince, who then have to pay more [should] not be treated equally like the poor people out of the mountains. And I think there it’s right. It’s just to make a system of justice.

Arguably, this physician had made some sort of peace with rationing decisions. Another informant cited an example of explicit hospital policy that limited her practice.

Somewhere around seven months ago we started the HAART program. The criteria was CD4 count under 200, or an AIDS-defining illness, and in-district. That went on for three months or so. [Laughs] I was enrolling people so fast that we ended up having to close the program. Cause we had some other criteria from the Board of Directors that said ‘In your first six months’ and then ‘In your first year’ how many patients maximum they wanted us to have. And we were already skimming over where we should be.

And finally, physicians often resolved the resource scarity dilemma in very personal, albeit impractical ways—such as by giving gifts to their patients with few resources.

I had one patient who had a very sick heart and lived far away, and had a hard time finding enough money to get transportation to come. And I ended up giving her money for transportation once or twice.

Physician informants therefore used various strategies to resolve the personal dilemma they faced, although when categorized according to specialty or nationality, no definitive patterns were noted. Interestingly, while not originally intended as a main area of study, a striking difference between Haitian and expatriate physicians was noticed upon analysis. Haitian physicians were as a group both subjected to violence and denied professional training opportunities in ways that expatri ate physicians were not. There was a roughly ten-fold difference between the salaries provided at HAS and those received by physicians expatriates when practicing in the developed world. Of the seven Haitian physicians interviewed, two had their residency training shortened significantly by strikes. One was not residency trained. Three had attempted to obtain additional training in the U.S.: one was able to secure a position but then unable to afford the tuition, one was unable to obtain any position due to credentialing barriers, and one was able to secure only a short observer position, in which he was unable to directly examine or care for patients. One subject's position at HAS was felt to be in jeopardy due to funding issues. Two subjects had either been the direct victims of violence (knives and guns) or had had close family members robbed or kidnapped. One subject fled the country after the study was completed for fear of violence, and to date, has been unable to secure employment in the U.S. Three additional Haitian physicians were unavailable for interviews, having previously been forced to leave HAS (two to flee the country), again for reasons of violence. Neither of the two who fled the country have been successful in their attempts to obtain residency positions in the U.S.

It is difficult to reach profound conclusions on the basis of a descriptive study of small size. Seventeen physicians were interviewed for this study, at a specific location and a specific point in time. As such, there are unlikely to be generalizable lessons to be learned. But in the process of this research I obtained insights into physician attitudes in resource-poor settings and discovered strategies used to reconcile certain related ethical dilemmas.

As Ivens Saint-Jean’s pediatrician, I offered money to his father to somehow help his son through help the terminal stages of an incurable illness, I did so because I had nothing else to offer. I did so, hoping to keep hunger and pain at bay, and in protest. Had Ivens been diagnosed in the developed world—if medical resources were equitably distributed on an international basis as a universal human right—he might have been cured. Paul Farmer concedes, “it is difficult, perhaps impossible, to meet the highest standards of health care in every situation. But it is an excellent idea to try to do so” (1999a, 1492). The tension between striving for that ideal and falling short is a challenge faced by HAS physicians.

But perhaps as important is the realization that the very conditions that produce such oppressing poverty and widespread illness in Haiti, the very conditions that require an ongoing infusion of expatriate knowledge and skills, are reflected not only in the lives of the poor but also in different ways even among the Haitian educated elite. Providing medical care to the poor may be personally satisfying even as it places physicians in an ethical quandary. But simply providing care may not be enough. It may be that efforts by expatriate physicians should also be directed towards assisting their professional colleagues in Haiti, so that in the future Haitians can help each other, rather than trying to secure individual safety through a continuing spiral of violence.

References

Farmer, P. 1999a. Pathologies of Power: Rethinking Health and Human Rights. Am J Public Health 89:1486-1496.

Farmer, P. 1999b. Infections and Inequalities. Berkeley: University of California Press.

Pan American Health Organization. The Haiti Crisis: Health Risks. Retrieved September 15, 2006 from http:// www.paho.org/English/DD/PED/HaitiHealthImpact.htm.

United Nations World Food Programme. 2005 (June 14). World Hunger-Haiti. Retrieved December 10, 2005 from http://www.wfp.org/country_brief/indexcountry.asp?country=332&region=4&section=

9&subsection=4.

United Nations. 1948 (December 10). Universal Declaration of Human Rights. Retrieved December 10, 2005 from http://www.unorg/Overview/rights.html.

United States Department of State, Bureau of Western Hemisphere Affairs. 2005 (February). Background Note: Haiti. Retrieved December 10, 2005 from http://www.state.gove/r/pa/ei/bgn/1982.htm.