“At Least You’ve Got Your Hope”: Against Hope in Medical Bioethics
A female patient, Rosemary, is in her early twenties and planning a pregnancy with her partner. She meets with her ob/gyn for a consultation. Her physician, a Dr. Sapirstein, advises her to pursue nontraditional herbal therapy to increase her chances of conception and suggests that she watch for environmental and epigenetic factors that may complicate her pregnancy. The patient conceives and brings her baby to full term. Delivery is slightly complicated by anxiety and health concerns: the patient presents with severe dyspnea, hypertension, and acute abdominal pain. The patient is given sedatives and relaxants to compensate and medical intervention is undertaken for delivery. Maternal bonding is delayed until post-operative recovery, given the physical stress of labor… and that her child is a spawn of Satan. Dr. Sapirstein, for the sake of his patient and the newborn, seeks to console Rosemary, who is shocked – expectedly – at the outcome. Sapirstein advises that, while the circumstances are unusual, Rosemary should have hope that her baby will benefit from her parenting just like any other. Rosemary finds comfort in this hope and is sent home with the child.
As a case in bioethics, the case of Rosemary’s Baby (1968) serves to demonstrate several things. First, expectant parents should become self-informed of potential unholy epigenetic and environmental threats from Satan-worshipping neighbors. But this principle plays second fiddle to the more central lesson that hope itself can have terrible consequences. Physicians are regularly faced with the ethical dilemma of offering medical truths to patients and offering shades of truths: both of which may leave the patient haunted by specters of doubt and fear about health outcomes. In the current arena of medical care and ethics, medical objectivity as it warrants a rather brute honesty in relaying health information to patients is out of vogue. In its place, an era of patient-centered care, empathetic listening, and discursive practice pushes physicians to moderate the transfer of potentially upsetting or “bad news” information to patients by offering, in addition, some reason to remain positive, or to have hope.
There are several reasons to give a patient hope. Psychological wellbeing that comes from hopefulness has been evidenced to increase positive health outcomes, or at least alleviate psychologically-negative outcomes of negative health prognoses. For an impressively thorough history of health-related conceptions of hope, see Jaklin Eliott’s 2005 introduction to “Interdisciplinary Perspectives on Hope.” As Eliott predicted in that introduction, more contemporary literature on hope in a biomedical setting has tended to focus on the need for a careful balance between false or empty hope (as in “getting one’s hopes up”) and positive hope (as in “have hope for the future”), analyzed quantitatively. But the focus on hope remains grossly under-theorized: there is no coherent conception of the nature of hope, nor of the role is plays in medical practice; nor, of the role it ought to play in medical practice. Yet, the assumption of its importance remains.
There is, of course, some practical appeal to its effectiveness. Having a self-conception of one’s health is linked to physical health implications: psychological and physical health are correlated if not causally connected. As one of my favorite six-fingered film characters Count Rugen quipped, “If you haven’t got your health, you haven’t got anything.” Of course, the irony of this statement was not lost on Westley, who had just been subjected to the life-draining Machine in the Pit of Despair, despite being told by Rugen just how much his suffering would be scientifically instructive for his “definitive work on the subject” of pain. From the perspective of the physician, if one doesn’t have her health, at least she might have hope. Sure, Rosemary’s baby might be a Satanic spawn poised to wrought destruction on humanity, and sure Count Rugen might exemplify a form of masochistic schadenfreude that comes from taking life from others; but, at least both offer their patients some form of hope.
Hope, in this sense, is a form of manipulation, analogous to the fear compelled by the killer in any good horror film. Why does the victim always make ridiculous decisions in horror movies? Fear makes those decisions seem reasonable, much like hope allows the patient to continue on paths of treatment or make new decisions regarding their health that deny or ignore inevitable outcomes. The victim runs into the arms of the killer or explores the dark and abandoned basement out of fear, even though the audience knows full well what is going to happen. The hopeful patient decides to continue treatment, plan for a healthy future, or ignore evidence, even though the physician knows full well what is going to happen. Indeed, it was this sort of silliness that led Ivan Illich and Robert Mendelsohn to write again medical bioethics. “…Medicine has ceased to look at the sufferings of a sick person: the object of care has become something called a human life,” they write. “…We consider bio-ethics irrelevant to the aliveness with which we intend to face pain and anguish, renunciation and death” (1987: 233). Aliveness calls for an honest attention to the contextual reality, and pushes back against the sort of empty hopefulness.
There’s a certain fatalistic perspective here, as if Life plays the role of the Dread Pirate Roberts, who famously ended each day with, “Good night, Westley. Good work. Sleep well. I’ll most likely kill you in the morning.” But, as Illich and others have pointed out, there’s nothing so horrible about this perspective. Life will, inevitably, kill us some morning and we might well focus on the here and now rather than holding out hope unreasonably for some alternative future. The focus on hope in bioethics, on my reading, serves as a distraction from doing good work in the here and now. It is not hope for the future that we need for health and happiness, but instead knowledge. Understanding the broader impacts of decisions we make, on our individual health and on broader social and environmental wellbeing, focuses us on the ecology of relationships that exist now. This is something we do without hope, or at least without the sort of hope that is potentially empty. That openness might be scary, but it’s surely not the makings of a horror film.
 Mack et al. 2007. “Hope and Prognostic Disclosure.” Journal of Clinical Oncology 25, no. 35: 5636-5642; Miller, G. 2012. “Hope is a Virtue.” Journal of Child Neurology 27, no. 12: 1616-1617; Patton et al. 2013. “Hope Language in Patients Undergoing Epilepsy Surgery.” Epilepsy and Behavior 29: 90-95.