We have all heard that trust can be hard to earn and once lost is hard to regain. This is especially true if the trust was never firmly established. Under either circumstance “I don’t trust you” is damaging and disorienting. The words are particularly vexing towards those who devote their lives to the care and healing of other people. Doctors might assume that good intention, impressive credentials, and diligent conduct would afford them the trust of their peers and, in the medical context, their patients. However, these assumptions are disconnected from the history of medicine and often turn out to be vacuous. Such is the case between medical practice and vulnerable populations.
Grappling with the implications of medical history, whether it is one patient or an entire class of patients requires a sensitivity that produces humbling revelations about the degree to which trust is important for the doctor-patient relationship. More important is undeniable truth that without trust, physicians cannot engage in ethically sound medical treatment and patients cannot receive medically sound advice.
A specific instance of medical mistrust that I will use is that of Mr. Miller, a sixty-year-old African American nursing home resident from a working-class background. He had been diagnosed with metastatic colon cancer during exploratory surgery for an abdominal mass. After the surgery, he was left with a permanent colostomy and two tubes protruding from his abdomen, one for feeding and one to drain his urine. Due to his poor health and functional status, the oncologist, Dr. Bonhom, recommended against chemotherapy and radiation therapy. Family members who visited Mr. Miller (two of his children and several grandchildren) appeared to agree but expressed no interest in preparing an advance directive.
One week later he was sent to the emergency room because of difficulty breathing. On arrival, he was in shock and hardly breathing. He was found to have pneumonia, a bladder infection, and multiple skin ulcers; one of these infections gave rise to an overwhelming blood infection. Dr. Schuler, the European-American resident caring for Mr. Miller in the emergency room, described the situation to Mr. Miller’s son. He said that because Mr. Miller was so gravely ill life support would be of no benefit; it would only harm him. He apologized for having to convey this news and proposed that Mr. Miller be given the utmost in comfort care but no life-support measures. The son disagreed with Dr. Schuler and became very upset. Unpersuaded by the resident’s responses, he demanded that “everything be done.”
Mr. Miller was intubated and sent to the intensive care unit. He was placed on a breathing machine. Catheters were inserted into large blood vessels to permit close monitoring of his vital signs and administration of powerful drugs to support his sagging blood pressure. During his first day, he became deeply comatose in spite of the treatment. Over the course of the week, all of Mr. Miller’s major organs failed. Yet the son joined now by the entire family, remained adamant that aggressive life support be continued. When, on the eighth hospital day, Mr. Miller’s condition had not improved, the family finally agreed to Dr. Bonhom’s proposal that life support be withdrawn and a do-not-resuscitate order written. Mr. Miller was extubated and he expired.
This case, which we will return to, examines the interaction between an African American family and a predominantly white medical staff. It hints at the ways in which communication breaks down between parties who misunderstand one another, but also, crucially, do not trust and believe one another. The case demonstrates the difficulty of acting when disagreement and mistrust are present. This difficulty, in acting, is not merely about consenting, accepting, or complying, but is a question about the psychological capability of the respective parties; it is a question of agency. In the example provided, more specifically, it is a case of human agency that is constrained by an oppressive, racially motivated history in which the social conditions that allow for intelligible, rational decision making never emerged. One result of this history that I will focus on is mistrust, which complicates and fragments both agency and relationship.
Sissela Bok is often quoted as saying that “There must be a minimal degree of trust in communication for language and action to be more than stabs in the dark” and “…trust is a social good to be protected just as much as the air we breathe or the water we drink. When it is damaged, the community as a whole suffers; and when it is destroyed, societies falter and collapse.” 1 But what is it about trust that is so important, and why is human agency so heavily dependent on it? To answer that question requires a few anthropological and sociological perspectives on what it is to be human and how we operate as socially situated and cognitively evolved beings.
Trust and the Social Basis of Agency
Human beings are born vulnerable and dependent and spend nearly a third of their lives under the care and supervision of others. The cycle of development that eventually produces a person capable of independent practical reasoning requires attention, nurturing, support, and cultivation through engagement. Persons, from conception to adulthood, are situated within a domain of societies, institutions, cultural traditions, religious practices, and familial obligations. Within this range of exterior inputs, persons develop expectations, form responsibilities, adapt to challenges, gradually learn to reason with their co-learners, and anticipate counsel and care from their caregivers and mentors. This, at least, is the idealized picture of what human life is like, broadly construed. For this picture depends on a certain kind of stability, a presumption of caring and trustworthy elders and friends, and on a general political environment that allows time for leisure and development. Unfortunately, these conditions do not often coincide for many people, and when they do they are often interrupted in ways that undermine the process of becoming a certain sort of person.
The setting for this process of “becoming” is all at once the household, the playground, the town hall, the front yard, the dinner table, the classroom, and so on. The social settings that teach us how to communicate, when it is appropriate to do so, and in what way, are varied and complex and rely on the facilitation of carefully chosen (we hope) individuals who have demonstrated the proper competencies and talents for this task. Within this matrix of carefully constructed activities, all constituting a ‘community’, is a set of precepts that are often implicit but necessary for the sustainment of social development. I will not attempt an exhaustive list of those precepts here, but I will mention one that seems intimately related to trust.
The first is that of honesty, which is defended by both Sissela Bok and notably Alasdair MacIntyre. 2 In After Virtue, MacIntyre proposes a social teleology for the development of the ‘concomitant’ self and the cultivation of the virtues. MacIntyre argues forcefully for the importance of the communal setting for these two dimensions of human life, but he thinks that without a society’s commitment to truthful relations both within and outside itself, the social fabric of a narratively unified and intelligible life breaks down. 3 We cannot engage in the construction of a shared life, which takes into account both our historical tradition and our perception of shared future, if we cannot commit to truthful engagements here and now. Truthfulness underlies coherent practices and in turn presuppose a certain degree of trust on the part of participants. 4
In Margaret Walker’s work on moral injury and reparative justice, she makes similar points. Walker sees the moral project as an attempt to establish a web of interlocking moral responsibilities that are dynamically and socially embedded and narratively transformed through critical dialogue. Walker writes, “To sustain moral relationships we require confidence in shared standards, and trust among individuals, and in a common human environment, that we ourselves and others will be responsive to these standards.” 5 Our moral relationships are held intact by a shared hopefulness that our trust has been well placed, and communal values that have bound us together can be sustained in light of that trust. Hopefulness and trust, together with other sentiments like resentment, are part and parcel of what it means to form a “normative expectation”; anticipating that the standards we share and values we hold are authoritative.
Walker understands trust interpersonally as “as a kind of reliance on others whom we expect to behave as relied upon and to behave that way in the awareness that they are liable to be held responsible for failing to do so or to make reasonable efforts to do so.” 6 Walker insists that her definition excludes any notion of motivation for trust and this is advantageous because “our trust in the satisfaction of normative expectations can rest on different understandings of other people’s interest in satisfying them, and perhaps do not have to rest on any very well-defined prior understandings.” 7 This does not mean that motivation is unimportant, Walker stresses. By not making motivation a part of the definition, Walker insists that the account is unburdened but still contains a unifying concept that distinguishes trust from “mere reliance.” Trust involves not merely relying on or expecting that certain promises will be kept, but contains a mechanism for holding others responsible when they fail or disregard another person.
From this definition, Walker moves to discuss what she calls ‘default trust’, which is a kind of relational trust that occurs between people in a relatively safe and stable environment. “Zones of default trust,” as Walker puts it, are those spaces and circumstances where there is ease, comfort, or complacency in the dealings between people who operate in largely unreflective ways. These spaces, because persons are largely successful within them, help to “confirm our beliefs in the integrity and goodwill of others generally, and so can fortify default trust.” 8 Default trust, despite being relatively unreflective, is one kind of goal in social situations, as it “is likely to foster the willingness of individuals to work cooperatively and to rely on others.” 8
The problems of deception and manipulation are of interest to both Walker and MacIntyre. In Dependent Rational Animals, MacIntyre reaffirms the importance of truthfulness and discusses three different ways that we can violate it. First, we can prevent people from learning what they need to learn in order to make progress in becoming practical reasoners. Second, we can conceal our real relationship with them. Third, we can engage in “irony.” 9 The first two concerns map onto Walker’s characterization of trust as a kind of reliance that lends itself to the affirmation of responsibility. The failure to be transparent in one’s dealings with others, as it pertains to the expectations of the specific relationship or in the instruction of a person, constitute a failure to respect the integrity of trust and also constitute a failure to live up to one’s responsibilities.
Agency and Social Constraints
Models of human agency taken from Western philosophical traditions over the past three hundred years derive their content from two basic commitments: impartiality and universality. In Adam Smith’s Theory of Moral Sentiments, we find the impartial spectator, the ideal of human agency who is wholly objective and a paragon of virtue. 10 From Kant, we derive notions of action and duty that must be universalizable for all rational agents. 11 Further, we get explicit rejections of moral conduct based in sentiment, passions, or inclinations. The pervasiveness of these ideas further reveals a commitment to rationality, prevalent throughout western philosophy, and, following Kant, Rousseau, and John Stuart Mill, autonomy or liberty. The picture we get of the moral actor is one who is free, their actions unrestricted and guided by the unfailing light of reason.
However, it is evident from my previous analysis of trust that human lives are socially situated in profoundly intricate ways. If trust has the moral significance that Bok, Walker, and indirectly MacIntyre, suggest, then we need to revisit the definition of agency that has been prominent in the writings of modernity. For it seems that the crucial dimensions of agency that are operative in more individualistic accounts, such as voluntariness, intention, and deliberation, must be understood in an irreducibly social way. I propose that we can see voluntariness as relational in virtue of the irreducible social dimension of human development, learning, and action. 12 Further, the deliberative component of agency seems to be distinctively relational, in that the vast majority of our cultural, historical, and social knowledge is communicated through narrative and testimony. Agency, on the basis of these observations, has an irreducible interpersonal component.
Once these traditional aspects are reinterpreted then we can begin to see agency as narratively constructed and socially collaborative. 13 To be a moral agent is to be in relation to others in a way that allows for your own social and cognitive abilities to be expressed and enhanced, and alternatively, in unfavorable conditions, stifled and degraded. It may be better, therefore, to talk about ‘collaborative agency’; a rich interpersonal effort to reach goals, reason about courses of action, and form an account of underlying values. Though this does not dissolve individuals into some unrecognizable whole, it does commit us to thinking of effective action and lasting relations as a function of communal effort and agency. Although it is conceivable that agents act individually, they cannot do so with the hope of reaching any worthwhile goals, as their lack of knowledge, support, and relationship will inevitably cause their resolve and actions to wither.
Racism and Medical Mistrust
At the beginning, I alluded to a case in which medical mistrust was present in a case of end of life care. Having rehearsed some aspects of trust and collaborative agency, we can begin to see how mistrust is problematic. However, to do so effectively we need to appreciate that the history of medical distrust is vast and highly integrated into a broader context of systemic racial discrimination.
It would fair to trace much of modern racial unease around medical institutions to the infamous Tuskegee Syphilis Study. This study took place between 1932 and 1972, in which a group of researchers observed hundreds of black men from Macon County, Alabama who had syphilis. These individuals were not treated and were denied medical care. The revelation and backlash associated with this study deeply battered race relations between the African American community and medical professionals. The deep injuries associated with this study manifested in HIV/AIDS prevention and treatment programs, which has been meticulously studied by Stephen Thomas and Sandra Quinn. 14
However, the history of distrust towards the biomedical community traces back much further. According to Vanessa Gamble, the distrust is rooted in the antebellum period when black persons were frequently used for medical experimentation and dissection. 15 Especially troubling for many during this period was the usage of dead black bodies, demonstrating a profound disrespect and disregard for burial grounds of black slaves. These types of activities proceeded up through the Civil War and in some cases afterward. Gamble reports that in much African American folklore, black persons reported being experimented on by “night doctors” and members of the Ku Klux Klan. Further, there are reports of grave robbing during the late 1880s for medical school experimentation. 16 By the early 20th century, the black community had established its own hospitals in order to combat the abuses of a white dominated medical profession, such as Chicago Provident Hospital. 17
This brief interlude demonstrates that medical mistrust stretches back through an intricate history. The Tuskegee study is but an example, although a very important one. It vindicated, according to Gamble, the longstanding fear and suspicion of many African American communities that the white medical community was intent on exploiting them. Indeed, the Tuskegee case was a confirmation to many that the white establishment was intent on instituting a method to exterminate the black community. This same suspicion was levied during the AIDS crisis, in which many African American men were dying swiftly and in large numbers, unnoticed by the white medical establishment. Though the victims of Tuskegee received an official apology from the United States government under President Bill Clinton, the history of exploitation and experimentation on black bodies throughout American history has yet to be accounted for.
The case that I began with, about Mr. Miller’s end of life treatment, is one example of a long history between African American patients and predominantly white attending physicians. The case revolves around both a failure on the part of the physician to be sensitive to how systemic injustice and racial biases within healthcare affect the decision making of their non-white patients. However, because of these systemic racial injustices, there is a failure on the part of the patient to accept sound medical advice. That said, there is some ambiguity in the case above. It is not completely clear that the decisions of the physician or patient are racially motivated. However, the fact that the attending physician assumed that they are, or may be, brings out the relevant features. The assumption of mistrust based on racism demonstrates that the physician is partially aware of the damage that strained race relations have caused, though this does not provoke a more sensitive response.
This failure to act appropriately in light of the racially sensitive circumstances is facilitated by a climate of mistrust, a slight inversion of Annette Baier’s useful concept. 18 For it might be thought, by the physician, that his actions will be taken as hostile and manipulative because he is a white doctor, and it is this assumption, which is grounded in the racially charged atmosphere of distrustful relations, that partially restricts his actions and thus perpetuates the tense environment. In Baier’s terms, the physician fails to display the relevant virtues of thoughtfulness and considerateness that are necessary, to maintain a space of trust that permits honest engagement. Mr. Miller’s son, who, though undoubtedly compromised by grief and incredulousness, is perhaps too distrustful of the physician to appreciate the sound medical advice being given. However, because the power dynamics representative in the physician-patient relationship, it may be less likely that he displays a deliberate vice, but rather that his ability to display trust and confidence is significantly undermined.
Mistrust, as I have explained it in the context of the case study above, is a type of constraint. It is an internal constraint because it emanates from the agent’s psyche, however, it is peculiar because it is produced and sustained because of external conditions; racial discrimination and medical manipulation. Moreover, it is a constraint that is profoundly social and is mutually disorienting. The “space of mistrust” affects all parties present in a given situation, as explained in the present case. It drastically undercuts the potential for action, both individually and collectively. Mistrust, therefore, fragments collaborative agency between parties who stand in opposition in the midst of a racially charged environment. No doubt, actions can be performed but they cannot be performed optimally in light of the best course of action, which is explained by the physician in this case.
Historical Accountability and Conflicts in Medical Practice
Understanding human behavior and human action as historically situated and presently collaborative places demands on how we engage with one another. In the case of medical mistrust within minority communities, it is a matter of, not merely conforming to practices that reinforce trust and compassion (informed consent, advanced directives, displaying truthfulness, etc.) but also of being accountable for the history in which medicine is situated. The history of medicine in the west is rife with examples of racially charged exploitation, and despite some improvements, this history still casts a shadow. Modern physicians can no more step outside of systemic racism and medical exploitation than could the researchers and physicians who practiced it in the earlier 20th century.
In order to competently and professionally approach the issue of mistrust, physicians, as well as the nurses, bioethicists, hospital administrators and social workers, must develop what Margaret Walker refers to as the virtues of historical accountability and civic integrity. 19 Though she does not apply this to medicine, per se, Walker’s suggestion is that in order to account for wrongs committed and to properly engage with persons who have been systemically wronged, it is not enough simply to offer goodwill, sympathy, and compensation. We must educate ourselves about the history of racism, the history of neglect, abuse, slavery, and degradation, and understand the reorientation of trust as existing within this social-historical space. Without this critical, historically informed reorientation, we, as a predominately white medical community, are left saying, “I didn’t do that. I am a good doctor.” The willful, blind ignorance behind this seemingly innocent statement is captured in many other areas where reparative measures are necessary in order to restore rights that have been denied based on racial, ethnic, and gender differences.
Trust is Not a Given: Some Advice for Medical Practitioners
It seems, then, that the best advice for current, as well as aspiring, physicians is that trust is not a given. A medical degree and a medical license are worthless artifacts to a patient who, through generational instruction as well as personal struggles with racial bias, does not trust you. Though you may be able to achieve the external end of medicine, that of a healthier patient, the internal goods of the medical practice, will remain largely absent. The internal goods of the practice, aside from the virtues of care, compassion, diligence, professional integrity, etc., are the goods achieved through the active and emotionally sensitive relationship that comes to exist between the physician and the patient. Practitioners cannot hope to maintain a healthy career if they cannot achieve these internal goods, and even if they have monetary success and a highly regarded practice, they may wonder whether there is not something more valuable to be had in the activities of the healing profession.
Physicians need to be advised and counseled about the cultural and historical underpinnings of their profession so that they can achieve the kind of awareness and sensitivity necessary to engage with patients in a way that yields trust and trustworthiness. Crucially, this is an endeavor that can only succeed if it is supported and sustained by the wider medical institution. In the course of designing curriculum and training for medical professionals, hospitals, clinics, and even private practices need to create a space for these conversations to occur and invite relevant experts to facilitate them. We cannot hope, unfortunately, that medical school will provide the full, historical accountability necessary to rebuild and reestablish trusting relationships. That occurs only through practice and commitment, both in the individual professional lives of medical practitioners and also through the policies of medical institutions.
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Footnotes
- Bok, Sissela. Lying : Moral Choice in Public and Private Life. 2nd Vintage Books ed. New York: Vintage Books, 1999, 19, 26.
- MacIntyre, Alasdair C. After Virtue : A Study in Moral Theory. 3rd ed. Notre Dame, Ind.: University of Notre Dame Press, 2007.
- After Virtue, 190-193.
- I take it that truthfulness and trust are interdependent. Telling the truth is often stifled when interacting with persons whom we do not know, or who we doubt, to be trustworthy individuals. However, trusting seems to presuppose that we take our collaborators to be honest and fair.
- Walker, Margaret Urban. Moral Repair Reconstructing Moral Relations after Wrongdoing. Cambridge ; New York: Cambridge University Press, 2006, 24-25.
- Moral Repair, 80. Walker notes that the reliance in question may be implicit or explicit.
- Moral Repair, 81.
- Moral Repair, 85.
- MacIntyre is referring explicitly to Richard Rorty’s observation that ironists understand that language is variable and can always be redescribed in innumerable ways. Because of this, ironists cannot take their claims too seriously because the content of these claims can always be reformulated to mean different things.
- Smith, Adam. The Theory of Moral Sentiments. Making of the Modern World (Gale (Firm)). London: Printed for A. Millar, and A. Kincaid and J. Bell, in Edinburgh, 1759.
- Kant, Immanuel, and James W. Ellington. Grounding for the Metaphysics of Morals ; With, On a Supposed Right to Lie Because of Philanthropic Concerns. 3rd ed. Indianapolis: Hackett Pub., 1993
- This relates to a feminist conception of relational autonomy, and perhaps relational agency. This observation arises out of the emphasis on relationality and also out of a concern for the fragility of human agency under strain. Similarly, Margaret Walker expresses this through an analysis of moral luck, which she takes to be a distinctive challenge to ‘pure agency’ and an opportunity to promote the virtues of impure agents. In her view, our recognition of tragedy, as well as luck, allows us to be “primed for dependability of humanly invaluable sorts.” See Moral Contexts.
- See Lindemann, Hilde. Damaged Identities, Narrative Repair. Ithaca, N.Y.: Cornell University Press, 2001.
- Thomas, S B, and S C Quinn. “The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community.” American Journal of Public Health 81, no. 11 (1991): 1498–1505.
- Gamble, V N. “Under the Shadow of Tuskegee: African Americans and Health Care.” American Journal of Public Health 87, no. 11 (1997): 1773–78.
- David C. Humphrey, “Dissection and Discrimination: The Social Origins of Cadavers in America, 1760-1915,” Bulletin of the New York Academy of Medicine 49 (1973): 819-827.
- See Vanessa Northington Gamble, Making a Place for Ourselves: The Black Hospital Movement, 1920-1945 (New York: Oxford University Press, 1995).
- In Baier’s work, she defines trust as a the acceptance of some degree of vulnerability to another’s power, in the confidence that this power will not be used to harm or hurt one. “A good climate of trust,” Baier writes, “is one in which the vulnerability is mutual, and people can be encouraged to trust each other.” See Baier, Annette. Moral Prejudices : Essays on Ethics. Cambridge, Mass.: Harvard University Press, 1994.
- Werpehowski, William, and Kathryn Getek Soltis. Virtue and the Moral Life : Theological and Philosophical Perspectives. Lanham, Maryland ; London, England: Lexington Books, 2014.