Hope at the Limits of Medicine
Andrea Thornton, PhD (c), BCC, Saint Louis University; Tyler Tate, MD, MA, Assistant Professor, Oregon Health and Science University; Benjamin Parviz, PhD Student, Saint Louis University; and Devan Stahl, PhD, Assistant Professor or Religion, Baylor University
Hope is of enduring relevance to people who suffer mortality, disease, and disability. The subject has received increasing attention as a positive psychological phenomenon that is instrumental in health care outcomes. Hope, as a result, is disciplined and subjugated to the goals of medicine. Sometimes, medicine disappoints and exploits that hope. Medicine, as concerned with care of bodies, is not adequate to the task of supporting patient and community hope for resurrection, restoration, or reconciliation. Thus, medicine fails to account for the full experience of hope and neglects holistic care for the soul. Because hope deals with expectations of the future, the experience is colored by uncertainty. Furthermore, because those expectations are often related to religious or spiritual experience, they have a theological dimension. Hopes may be manifest in appeals to miraculous healing. The bioethics literature indicates a lack of consensus on how to engage these appeals. To contribute to the conversation, this panel includes a variety of perspectives on hope in the Christian tradition when engaging disability, biomedical research, and end-of-life clinical decisions.
“Hope and Disability in the Christian Theology”
What is the hope for disability within medicine and what do patients with disabilities hope for? The answers to these questions may differ dramatically. Medical research directed at disability often aims to eliminate or fix disability. The hope is often articulated as a world free of disability. People with disabilities on the other hand, often hope to be believed by their doctors, treated with dignity and respect in the medical encounter, and for technologies to be developed that make their encounters with the built environment easier and less painful. For many disabled people, the hope for a world without disability is a hope for a world in which they do not exist. Christians likewise often place eschatological hope in a “new heaven and a new earth” free of disability. The harmony between the hopes of medical researchers and Christian theology led many Christians to support the eugenics movement in the early 20th century. This presentation will discuss how this alliance came about and how it might be resisted in the future. The presenter will draw on insights from disability theologians who warn that contemporary genetic technologies represent a kind of velvet eugenics that replicate the ontological presumptions and ableism of early eugenicists. As an alternative, Christians must be able to imagine eschatologies that center rather than displace disability. Hope for disability lies not in its eradication but in finding its rightful place in the body of Christ.
“Hope, Rationality, and Informed Consent”
Patient hope seems to present a dilemma for clinical researchers. Patients may choose to participate in a clinical trial either as a result of their hope, or in order to support hope. In the medical context, patient hope is such an important good that Lawrence declares it a commandment in medicine to “Never take away a patient’s hope!” In the research context, expressions of patient hope as an explanation of the decision to participate in a trial may be worrisome. A valid informed consent requires that an enrollee know, understand, and appreciate the nature of the study in which he autonomously and voluntarily agrees to participate as subject, but some researchers worry that expressions of hope indicate errors of reasoning that compromise the patient’s understanding or appreciation of the trial’s nature, risks, and benefits. To what extent can expressions of hope act as a barometer of rationality? What is hope, and how does hope interact with rationality? In this essay I consider what a patient might mean if they use a hope expression to explain their reason for choosing to participate in a clinical trial. I present a taxonomy of four different kinds of hope and consider whether or not each kind of hope creates a point of entry for error of reasoning into patient deliberation. I argue that in three of the four kinds of hope examined, hope does not provide any reason for concern about rationality or valid consent. I do this to show that the clinical researcher’s worry about hope is misplaced. Though clinical researchers ought to ensure that patients understand and appreciate the nature, risks, and benefits of a study prior to receiving their consent to participate, patient hope is not a matter of concern for valid consent or clinical research.
“Futility and False Hope”
The bioethics world has become increasingly interested in the psychological phenomena of hope, unrealistic optimism, and denial because of how these phenomena play out in terminal illness prognoses and clinical decision making. Lawrence Schneiderman warned us of the “Perils of Hope” in his work on futility as that debate quieted down in the early 2000’s. Although the futility debate in bioethics literature has died down in recent years, the problems of false hope raised in that literature have not been adequately addressed. The focus shifted from the concern of futile treatments to the concern that families lacked the authority to demand such treatments because their hopes were irrational. The consequence is a contentious relationship with health care providers and enormous spiritual and emotional distress. These deeper problems remain unaddressed. I argue that family hope for a miracle is fundamentally a theological problem and should be addressed theologically.
Learning Objectives:
“Hope and Disability in the Christian Theology”
What is the hope for disability within medicine and what do patients with disabilities hope for? The answers to these questions may differ dramatically. Medical research directed at disability often aims to eliminate or fix disability. The hope is often articulated as a world free of disability. People with disabilities on the other hand, often hope to be believed by their doctors, treated with dignity and respect in the medical encounter, and for technologies to be developed that make their encounters with the built environment easier and less painful. For many disabled people, the hope for a world without disability is a hope for a world in which they do not exist. Christians likewise often place eschatological hope in a “new heaven and a new earth” free of disability. The harmony between the hopes of medical researchers and Christian theology led many Christians to support the eugenics movement in the early 20th century. This presentation will discuss how this alliance came about and how it might be resisted in the future. The presenter will draw on insights from disability theologians who warn that contemporary genetic technologies represent a kind of velvet eugenics that replicate the ontological presumptions and ableism of early eugenicists. As an alternative, Christians must be able to imagine eschatologies that center rather than displace disability. Hope for disability lies not in its eradication but in finding its rightful place in the body of Christ.
“Hope, Rationality, and Informed Consent”
Patient hope seems to present a dilemma for clinical researchers. Patients may choose to participate in a clinical trial either as a result of their hope, or in order to support hope. In the medical context, patient hope is such an important good that Lawrence declares it a commandment in medicine to “Never take away a patient’s hope!” In the research context, expressions of patient hope as an explanation of the decision to participate in a trial may be worrisome. A valid informed consent requires that an enrollee know, understand, and appreciate the nature of the study in which he autonomously and voluntarily agrees to participate as subject, but some researchers worry that expressions of hope indicate errors of reasoning that compromise the patient’s understanding or appreciation of the trial’s nature, risks, and benefits. To what extent can expressions of hope act as a barometer of rationality? What is hope, and how does hope interact with rationality? In this essay I consider what a patient might mean if they use a hope expression to explain their reason for choosing to participate in a clinical trial. I present a taxonomy of four different kinds of hope and consider whether or not each kind of hope creates a point of entry for error of reasoning into patient deliberation. I argue that in three of the four kinds of hope examined, hope does not provide any reason for concern about rationality or valid consent. I do this to show that the clinical researcher’s worry about hope is misplaced. Though clinical researchers ought to ensure that patients understand and appreciate the nature, risks, and benefits of a study prior to receiving their consent to participate, patient hope is not a matter of concern for valid consent or clinical research.
“Futility and False Hope”
The bioethics world has become increasingly interested in the psychological phenomena of hope, unrealistic optimism, and denial because of how these phenomena play out in terminal illness prognoses and clinical decision making. Lawrence Schneiderman warned us of the “Perils of Hope” in his work on futility as that debate quieted down in the early 2000’s. Although the futility debate in bioethics literature has died down in recent years, the problems of false hope raised in that literature have not been adequately addressed. The focus shifted from the concern of futile treatments to the concern that families lacked the authority to demand such treatments because their hopes were irrational. The consequence is a contentious relationship with health care providers and enormous spiritual and emotional distress. These deeper problems remain unaddressed. I argue that family hope for a miracle is fundamentally a theological problem and should be addressed theologically.
Learning Objectives:
- Attendees will be able to recognize the limitations in the bioethical conversation on hope and rationality.
- Attendees will be able to identify manifestations of hope that are problematic for just medicine.
- Attendees will be able to distinguish the theological and philosophical dimensions of hope.