Uncertainty as Hope in the Medical and Political Space
By Julia Broach
Abstract:
The role of uncertainty can provide hope in both the medical and political spheres, but the function of that hope differs distinctly in the two contexts. This paper compares the role of uncertainty in medical prognosis for the terminally ill and in the forced disappearances of civilians at the hands of the military dictatorship of the 1970s in Argentina. There exists a power relationship between the information-holders and those who wait to receive the information in both situations. In the medical space, however, uncertainty can act as a calming, mitigating force for patients, while in the political space it acts as an agitator.
In extreme situations of suffering, the role uncertainty plays can be one of providing hope. In the hospital, there often exists uncertainty about a critically ill patient’s condition, what the physician knows about its likely trajectory, and how she or he conveys this truth to the patient. That uncertainty can allow the patient and loved ones the chance to hope for good news, even despite grave odds. In the political space of disappearances, where civilians have been taken by the military, the authorities often
purposefully maintain an uncertainty about what happened to the civilians and who is accountable. In the short term, the uncertainty allows the victims’ families to continue to hope for the return of the missing people, or at least for more information about them.
Persisting uncertainty motivates families to continue seeking the truth. In both spaces, there exists a power relationship in which those with information have control of the truth and hold it over those who wait to receive information. Though uncertainty allows for
hope in both situations, the nature of the power relationships differs, as does the nature of the truths themselves, and, therefore, the reactions people have to the uncertainty differ. In the medical space, because of the perceived benevolence of the physicians and because of the nature of the truth they hold, uncertainty, as hope, can act as a tranquilizer for patients, calming their fears. In the political space of disappearances, however, because of the perceived lack of benevolence on the part of the government authorities and the nature of the truths they withhold, uncertainty acts as an agitator for those who seek the truth.
The relationship between those knowledgeable about the truth (physicians and government authorities) and those seeking the truth (patients and families of the disappeared) is one defined by the power of the former over the latter. Within the medical space, the patient is dependent on the doctor’s esoteric knowledge about her or his illness. The physician maintains a power position by controlling how she or he conveys the information to the patient. Through this process, the physician aims to meet her or his own needs as well as the needs of the patient. The doctor may consider herself or himself as being patient-centered and to be working as an “autonomous moral agent,” (Miyaji, 252) which requires making a specific decision for each patient about how to convey information. This sort of individual attention involves the physician’s interpreting the patient’s ability to handle the information emotionally and understand the information based on her or his gender, age, educational level, and occupation, before choosing how and what to say to the patient. Doctors vary the style with which they convey information and many interpret norms on a case-by-case basis, but ultimately they always maintain power over the conveying of medical information.
In the political context of disappearances that occurred from 1976-1983 in Argentina, the military government originally used uncertainty as a tactic to repress and control the public. After the 1976 military coup, people deemed as “subversive,” including students, teachers, journalists, and politicians were abducted; these victims became known as the disappeared. A year after the disappearances began occurring, a group of mothers began to gather in the Plaza de Mayo in Buenos Aires demanding information about what happened to their children. The mothers did not know why their children were taken, what happened to them, where they were, or if they were alive. The government withheld this information and maintained a cover of secrecy around the disappearances. The relationship within this political context was antagonistic, the information holders against the truth seekers. The government was concerned with protecting its image and used uncertainty to maintain power over the families of its victims.
In both the medical and political spaces, uncertainty plays a similar role in that it serves to provide hope for victims. Uncertainty, or the telling of something short of the whole truth, in the medical space can provide hope to patients and family, which is calming and can make the experience for the patient less painful. In the past, doctors believed that keeping a prognosis of terminal illness a secret was justifiable because patients feared death so intensely, and the secret provided hope for the patient, instead. In Miyaji’s study of the perceptions of American doctors about truth-telling practices, half of the doctors believed that if news deprives a patient of hope, the doctors should withhold information, sweeten information, tell miracle stories, or offset the bad news with the possibility of treatment. Doctors must also consider that the patient may desire uncertainty. There are multiple forms of hope: “hope for cure,” “hope for freedom from pain,” and “hope for dying a good death,” (Miyaji, 255) and the information given to a patient varies depending on the type of hope understood to be possible by both the patient and the doctor. The decisions regarding what sort of hope to encourage involve the doctor’s own beliefs regarding medicine and life as well as the patient’s beliefs and desires for her or his own life.
In the political space of the disappearances, uncertainty acts as a unifying catalyst for action among those seeking the truth. The trauma endured by the Mothers of the disappeared left the women in a state of limbo, because they had no knowledge about what happened to their children or even if they were alive or dead. The not knowing and the inability to resolve the situation “created an endless circle of fear, doubt, grief, and hope over which they had little control” (Foss, Domenici, 246). This state of not knowing acted to unite the Mothers in their seeking out of the truth and in their demanding of justice. The Mothers used the lack of information about what happened to the disappeared in a creative way as part of their strategy to change the “terms of discourse” about the disappearances (Crossland, 122). As a way to gain control back from the government, the Mothers made visible their questions about what happened by
moving into the public space with their demands. They developed phrases exhibiting unending patience and the permanent state of waiting, such as “permanently pregnant” (Foss, Domenici, 246). This phrase allows the Mothers to assert their motherhood while
emphasizing that they will not give up their demands to understand what happened to their children. Another phrase, “accumulated youth,” represents how the uncertainty of what happened to their children has led to an energy and vitality in the Mothers. Although many of the Mothers are aging, they work on behalf of their children to fight for social justice and accountability. Some Mothers also refuse to talk about their children as dead. The Mothers have the slogan, “Bring Them Back Alive,” because although they understand the disappeared are likely dead, this slogan references the fact that no one has taken responsibility for their deaths.
The act of the Mothers circling Plaza de Mayo makes visible the agitated suffering that the uncertainty causes, as their walking in circles represents the endless psychological and emotional torment that exists from not knowing. These gatherings in the Plaza de Mayo not only make visible the uncertainty that still exists in Argentine society regarding the disappearance of its citizens, but they also empower the Mothers to better cope with their stressful limbo state by joining them with others who are suffering in the same way. The action allows the mothers to manage the trauma and gain back control. The circle reminds the public and the government that the disappearances are still unresolved and there are still no answers. Because of the uncertainty, there remains hope for the Mothers that they may find answers. This hope inspires the Mothers, as they process their own trauma and articulate that trauma for the public. These means allow them to move from being haunted and “trapped in their homes by immobility over their children’s disappearances—to producing visions with which to haunt the national consciousness” (Foss, Domenici, 252). The uncertainty and search for truth has led the mothers from personal trauma to action.
The very understanding of truth within this political sphere differs from that in medical situations, and these understandings affect the way truth-seekers in both situations respond to uncertainty. In the medical space there is rarely, if ever, a whole truth about a patient’s illness and its future course, however, in the political space of the disappearances, there exists somewhere a distinct knowledge about what happened in the past. Physicians assert that medical information itself is “uncertain” and “revealed gradually in accordance with the natural course of a disease intervention with diagnostic tests and treatment” (Miyaji, 254). In addition, the definition of what constitutes the truth is also unclear in the medical context. Truth does not necessarily result from telling all available information. A precise understanding of what constitutes the truth does not exist, and it is unclear whether an attempt to reach the truth demands one certain set of words or another. The telling of this truth depends on the patient’s perceived wish and right to know. Also, truth in this context cannot be “reduced to the veracity of a verbal statement” (Armstrong, 654), because a telling of the truth assumes the patient can hear it and understand it as such and the doctor knows it to be so and can convey it as such.
Because of the uncertain nature of the truth they seek and the benevolence of those holding that truth, truth-seekers in the medical sphere can possibly find a calming comfort in what they do not know. There is no absolute truth, no matter how hard they seek, and there is a definite eventual end to the uncertainty. In the political space of the disappearances, the military authorities hold the absolute truth about what happened to the disappeared. This truth is not a future prediction, like in the medical space; rather there is knowledge about a set of events that happened in the past. Truth-seekers in this political space are not likely to find a calming hope in uncertainty, but rather an agitated hope that those in power withholding the facts about what has happened will someday release information
leading to justice for all concerned, prosecution of those responsible and finally an end to the ongoing uncertainty. Uncertainty in both of these contexts, however, creates a hope that allows those suffering to keep living.
Works Cited
Armstrong, D. (1987). Silence and truth in death and dying. Social Science & Medicine, 24(8), 651-657.
Crossland, Z. (2002). Violent spaces: conflict over the reappearance of Argentina’s Disappeared (J. Schofield, C. Beck, and W. G. Johnson Eds). The Archaeology of 20th Century Conflict, 115-131.
Foss, Karen A., and Kathy L. Domenici. (2001). Haunting Argentina: Synecdoche in the Protests of the Mothers of the Plaza de Mayo. Quarterly Journal of Speech 87.3, 237-258.
Miyaji, Naoko T. (1993). The Power of Compassion: Truth-telling among American Doctors in the Care of Dying Patients. Social Science & Medicine 36.3, 249-6