Voices from the Margins: Important considerations from ethics consultants and community member perspectives
Susan Mason and Georgina Campelia
Healthcare Professionalism: Education, Research & Resources
““Shared Risk” and the Ethics of Novel Male Contraceptives”, Contraception, in press 2020.
Campelia, G., C. Abbe, L. Nichols, John K. Amory.
Novel male contraception has the potential to enhance reproductive autonomy for men [ 1 , 2 , 3 , 4 ] and offer greater equity in contraceptive responsibility for monogamous or non-monogamous heterosexual relationships [ 1 ]. However, novel male contraceptives have been in development for decades, with no method able to reach the market to-date. Technical challenges inherent in the development of novel reversible male contraceptives have been detailed in other publications [ 5 , 6 ]. The negative impact of gender bias in this setting has also been explored [ 1 ]. Moreover, medicolegal issues have presented enormous challenges in female contraception development, leading to the discontinuation of some approved products. Similar concerns are likely to affect the development of novel male contraception, which is thus far unexplored and will require further analysis. For our purposes here, we will focus on one of the key ethical challenges in this domain. How ought medical professionals and researchers assess the balance of nonmaleficence (do no harm or avoid risks) and beneficence (seek the greatest good or benefit) [ 7 ], when male contraception has impacts that extend beyond the user of the contraceptive?
Creating Space for Feminist Ethics in Medical School HEC Forum
Campelia, G., Feinsinger, A. (2020).
Alongside clinical practice, medical schools now confront mounting reasons to examine nontraditional approaches to ethics. Increasing awareness of systems of oppression and their effects on the experiences of trainees, patients, professionals, and generally on medical care, is pushing medical curriculum into an unfamiliar territory. While there is room throughout medical school to take up these concerns, ethics curricula are well-positioned to explore new pedagogical approaches. Feminist ethics has long addressed systems of oppression and broader structures of power. Some of its established concepts can offer distinct value as medical climates change and adapt in response to increased awareness of the experiences of marginalized individuals and populations. In this essay, we offer a set of concepts from feminist ethics that have a fundamental role to play in medical school curriculum: relationality, relational autonomy, and epistemic justice. Though these concepts are not exhaustive, they can be taught in tandem with the concepts that have historically grounded ethics education in medical school, such as autonomy and beneficence. Ultimately, we contend that these concepts hold particular value in ethics curriculum insofar as they diversify mainstream ethical approaches, directly address the pervasiveness of systems of oppression in medicine, and recognize the voices and concerns that may be marginalized in standard approaches.
“Pierre in the Clinic,” Pediatric Ethiscope.
Wightman, A., Tate, T. and Campelia, G.
Disengagement and non-adherence of an adolescent with chronic disease potentially leading to life-threatening complications is a common and distressing challenge encountered by pediatricians. We believe these cases echo Maurice Sendak’s classic children’s story Pierre, which tells the story of a boy who will only say “I don’t care.” When encountering a Pierre case most clinicians intuitively focus on balancing the patient’s emerging autonomy with beneficence and non-maleficence to guide their actions, but these interventions require substantial care labor and may prove unsuccessful, leading to distress or burn out. In Pierre cases we believe ‘good care’ may be better understood through the lens of care ethics. This approach centralizes the wellbeing of the therapeutic clinician-patient relationship itself, which is intrinsic to the practice of pediatrics.
Campelia, G., Kirkpatrick, J. December 2019. “Reinterpreting Informed Decision-Making through the Clinician-Patient Relationship,” Annals of Thoracic Surgery, 108(6):1610–1611.
In this case, 1 Mr Fyooznik’s preference not to be informed should cause clinicians to pause, as Dr Marcats does. True informed consent not only supports patient autonomy but protects patient well-being and defends against exploitation. 2 Although relatively safe, surgery does place Mr Fyooznik at risk for death, to say nothing of stroke, severe bleeding, infection, and permanently weakened heart muscle, all of which could leave Mr Fyooznik worse off than he would have been without the operation, at least for a time. These risks are difficult to weigh adequately without knowing the patient’s perspective.
Campelia, G., F. Barg, J. Kirkpatrick, S. Hull. Autumn 2019. “Care Labor in VAD Therapy: Some Feminist Concerns”, Perspectives in Biology & Medicine, 62(4): 64(4): 640-656.
Ventricular assist device (VAD) care offers a distinctive lens through which we can explore unjust gender norms. This is a resource-intensive intervention, one in which increasingly sophisticated technology brings with it the need for more long-term care. This care work is demanding, involving device maintenance, medication and appointment management, household work, and emotional support. Most patients eligible for receiving VADs are men, so it is not surprising that it is more often women who are responsible for the care of patients with VADs. Still, there is room to question why so much of this labor is expected of and taken on by female caregivers, when it could be shared with male caregivers and even patients themselves. To the extent that gender difference in the distribution of this labor is avoidable and inequitable, it becomes in part a disparity resulting from unjust social norms. In order to unpack some of this injustice, the authors utilize empiric data and theoretical work in feminist ethics to articulate some of the mechanisms of the gender disparity in VAD care labor and to offer communitarian decision-making and redistribution of care labor as potential routes toward greater justice for women with respect to VAD therapy.
Montenegro, R. and G. Campelia "Ongoing Obstacles to Confronting Microaggressions in Medicine", PM&R Sep 2019.
Roberto E. Montenegro, MD, PhD, an assistant professor of child and adolescent psychiatry at the University of Washington School of Medicine and Seattle Children's Hospital and Georgina Campelia, PhD an assistant professor, philosopher and clinical ethicist in the Department of Bioethics and Humanities at the University of Washington School of Medicine discuss racism and the obstacles that persist in tackling microaggressions. The four pieces drawn together begin an important conversation about microaggressions in PM&R training and practice.
Campelia, G., and T. Tate. (March/April 2019). “Empathetic Practice: The Struggle & Virtue of Empathizing with a Patient’s Suffering”, Hastings Center Report.
In this article, our analysis of empathy in the clinical context hinges on the complexities of patients who are acutely suffering. Using a case concerning a heart transplant patient with Duchenne muscular dystrophy, Alex, and his nurse, Joe, we investigate how empathy’s phenomenological nebulousness can generate doubts about its virtue. Even when asking, “How are you, Alex?” Joe hates the question; it seems empty, silly. Cases like this show both that the enactment of empathy is sometimes challenging and that it can be reasonable to wonder if empathy is a virtue at all. Perhaps Alex’s suffering is simply too massive: Joe cannot possibly know how he feels, so why try? Perhaps empathy would only cause Joe to suffer along with Alex. Not only is empathy difficult to produce in the context of Alex’s suffering; it may not even be possible; and if we simply cannot muster empathy, what is the point of morally demanding it?
In response, we distinguish different kinds of empathic engagements from one another and offer separate counsel. We argue that it is important to understand empathy as something that must be honed across varied contexts before it can be called a virtue. Conceptualizing and operationalizing empathy in this way helps to ground its possibility and virtue even in the most challenging and complex clinical encounters.
Campelia, GD, DM Dudzinski. 2019. “History and Development of Medical Ethics in the West”, Surgical Ethics. Springer Nature.
This chapter will chart some of the history of medical ethics in the West, beginning before the term was coined in 1803 by Thomas Percival and ending with today’s notion of bioethics. This chapter will address some of the key conflicts and historical shifts that transformed medical ethics from an unnamed and amorphous idea to a distinctive field of study informing patient care. The path is complex with medical advances and pitfalls over the centuries that both compel and inhibit progress. With each historical shift, distinguishing features arise. Medical ethics first takes shape in oaths of faith and loyalty, where the virtues and moral obligations of physicians were grounded in the dictates of the gods, the state, the crown, and/or the church. Over the course of the sixteenth to the nineteenth centuries, these oaths come to be defined by an emerging practice of medicine. As such, the power of the oaths comes from the professional contract rather than those higher authorities. Even so, little has changed in the named virtues (fidelity, beneficence, compassion, integrity), and their moral standing continued to be founded on social consensus rather than moral argument. Finally, through the struggles and failures of scientific progress in the nineteenth and twentieth centuries, there is an urgent demand for the moral reasoning and rigorous justification that comes to define bioethics as we know it today.