Autumn Fiester

The “Difficult” Patient Reconceived: An Expanded Moral Mandate for Clinical Ethics

Between 15 and 60% of patients are considered “difficult” by their treating physicians. Patient psychiatric pathology is the conventional explanation for why patients are deemed “difficult.” But the prevalence of the problem suggests the possibility of a less pathological cause. I argue that the phenomenon can be better explained as a response to problematic interactions related to health care delivery. If there are grounds to reconceive the “difficult” patient as reacting to the perception of ill treatment, then there is an ethical obligation to address this perception of harm. Resolution of such conflicts currently lies with the provider and patient. But the ethical stakes place these conflicts into the province of the ethics consult service. As the resource for addressing ethical dilemmas, there is a moral mandate to offer assistance in the resolution of these ethically charged conflicts that is no less pressing than the more familiar terrain of clinical ethics consultation.

Justifying a presumption of restraint in animal biotechnology research.

Articulating the publics widespread unease about animal biotechnology has not been easy, and the first attempts have not been able to provide an effective tool for navigating the moral permissibility of this research. Because these moral intuitions have been difficult to cash out, they have been belittled as representing nothing more than fear or confusion. But there are sound philosophical reasons supporting the publics opposition to animal biotechnology and these arguments justify a default position of resistance I call the Presumption of Restraint. The Presumption of Restraint constitutes a justificatory process that sets out the criteria for permitting or rejecting individual biotechnology projects. This Presumption of Restraint can be overridden by compelling arguments that speak to a projects moral and scientific merit. This strategy creates a middle-of-the-road stance that can embrace particular projects, while rejecting others. The Presumption of Restraint can also serve as a model for assessing moral permissibility in other areas of technological innovation.

Ethical issues in animal cloning.

The issue of human reproductive cloning has recently received a great deal attention in public discourse. Bioethicists, policy makers, and the media have been quick to identify the key ethical issues involved in human reproductive cloning and to argue, almost unanimously, for an international ban on such attempts. Meanwhile, scientists have proceeded with extensive research agendas in the cloning of animals. Despite this research, there has been little public discussion of the ethical issues raised by animal cloning projects. Polling data show that the public is decidedly against the cloning of animals. To understand the publics reaction and fill the void of reasoned debate about the issue, we need to review the possible objections to animal cloning and assess the merits of the anti–animal cloning stance. Some objections to animal cloning (e.g., the impact of cloning on the population of unwanted animals) can be easily addressed, while others (e.g., the health of cloned animals) require more serious attention by the public and policy makers.

Addressing Consent Issues in Donation After Circulatory Determination of Death

Given the widening gap between the number of individuals on transplant waiting lists and the availability of donated organs, as well as the recent plateau in donations based on neurological criteria (i.e., brain death), there has been a growing interest in expanding donation after circulatory determination of death. While the prevalence of this form of organ donation continues to increase, many thorny ethical issues remain, often creating moral distress in both clinicians and families. In this article, we address one of these issues, namely, the challenges surrounding patient and surrogate informed consent for donation after circulatory determination of death. First we discuss several general concerns regarding consent related to this form of organ donation, and then we address additional issues that are unique to three different patient categories: adult patients with medical decision-making capacity or potential capacity, adult patients who lack capacity, and pediatric patients.

Neglected Ends: Clinical Ethics Consultation and the Prospects for Closure

Clinical ethics consultations (CECs) are sometimes deemed complete at the moment when the consultants make a recommendation. In CECs that involve actual ethical conflict, this view of a consults endpoint runs the risk of overemphasizing the conflicts resolution at the expense of the consults process, which can have deleterious effects on the various parties in the conflict. This overly narrow focus on reaching a decision or recommendation in consults that involve profound moral disagreement can result in two types of adverse, lingering sequelae: moral distress or negative moral emotions. The problem, succinctly named, is that such consults have insufficient “closure” for patients, families, and providers. To promote closure, and avoid the ills of moral distress and the moral emotions, I argue that CECs need to prioritize assisted conversation between the different stakeholders in these conflicts, what is often referred to as “bioethics mediation.”

From “Longshot” to “Fantasy”: Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail

Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve their stated goal, but conceivably could. When patients embark on such a treatment plan, it may fail. Often treatment toward an initial goal continues beyond the point at which such a goal is feasible. We explore the progression of care from longshot to fantasy using two pediatric cases. This progression may be differentiated into four distinct stages of care related to the potential of achieving the initial goals of care. Physicians are often ill prepared for the progression of treatments from a longshot hope to an unfeasible and, therefore, typically unjustified intervention. We present a structured approach to guide clinicians at referral institutions where these situations may be common. The transition of care from “longshot” to “fantasy” is an inherent part of quaternary care for the sickest of patients that has been underexplored. Physicians are often poorly equipped to approach that transition. We advocate this approach to the shift from longshot to fantasy with the belief that such a structured method will have multiple benefits, including: reduced suffering for the patient; decreased emotional burden on patient and family; decreased provider moral distress; increased likelihood of seeking high quality palliative care earlier; and provision of honest and straightforward information to patients and their families.

A False Sense of Security: Lesbian, Gay, Bisexual, and Transgender (LGBT) Surrogate Health Care Decision-Making Rights

This article addresses the timely and ethically problematic issue of surrogate decision-making rights for lesbian, gay, bisexual, and transgender (LGBT) patients and their families in the American health care system. Despite multiple pro-LGBT recommendations that have been released in recent years by the Obama administration, the Institute of Medicine, and the US Department of Health and Human Services, such initiatives, while laudable, also have unfortunately occasioned a “false sense of security” for many LGBT patients, their families, and their caregivers. In particular, new regulations on surrogate decision making merely invoke a sense of universal patient rights rather than actually generating them. Therefore, it is imperative that primary care physicians urge all LGBT patients to take proactive steps to protect themselves and their loved ones by naming proxy decision makers well before the crises that would necessitate such decisions.

Incidental findings and the need for a revised informed consent process.

OBJECTIVE The current clinical practice with regard to incidental findings (IFs) is suboptimal in the domains of informed consent and patient education. We argue that a more robust informed consent process is needed to enable patients to anticipate incidentalomas and to correctly perceive the associated risks. CONCLUSION Given that IFs are very common in high-resolution imaging, patients should be provided information about the possibility of an IF as part of radiologic informed consent. The frequency of IFs, the very high rates of false-positives among incidentalomas, the very low rates of malignancies among incidentalomas, and the potential financial and emotional costs to both patients and the health care system of monitoring IFs necessitate a thorough informed consent process. Further, because radiologists are the most knowledgeable professionals regarding the nature of IFs, they should be the specialists who conduct the informed consent discussion with patients.

QUEER BIOETHICS: WHY ITS TIME HAS COME

It seems that reflections on the state of the field of bioethics are everywhere these days. And there appears to be a common indictment coming out of those reflections: Bioethics has become ‘predictable’ and ‘narrow,’ ‘sterile and unquestioning,’ and in need of engagement with longneglected subjects using ‘new intellectual approaches.’ It is a call for a broadening of what is worthy of bioethical attention; an expansion in the theoretical resources employed; and the deployment of a skeptical, critical eye on current biomedical practices, policies, inequities, and biases. In his recent The Future of Bioethics, Howard Brody urges us to ask, ‘Is bioethics succeeding in speaking truth to power? Is bioethics effectively taking the side of the relatively less powerful, or siding with those who would exploit them?’ We want to lend our voice to this general call and critique. But although each of these critiques has been accompanied by a list of overlooked topics – disabilities, public health ethics, environmental issues, health disparities, and cross-cultural concerns, to name a few – one category made no one’s list: sexuality and gender identity. While the bioethical dilemmas facing LGBTQI (lesbian, gay, bisexual, transgender, queer, and intersex) persons could qualify under some of the above rubrics, the specific concerns of this community merit their own field of inquiry. LGBTQI bioethics, what we call ‘queer bioethics,’ meets all of the demands made by the discipline’s critics. It places the ‘less powerful’ center-stage; it challenges the status quo and the presumptive legitimacy of the normative; it employs powerful intellectual resources from neighboring fields (queer theory, disability studies, medical humanities, and the history of medicine); and, it challenges our complacency in the face of injustice and discrimination in medical encounters, systems, and policies. Given a parallel urgency to the other topics that critics press us to address, the time for queer bioethics is now. That other institutions and organizations are becoming invested in the concerns of queer patient populations makes the absence of queer bioethics all the more glaring. The EU (European Union) Charter of Fundamental Human Rights, for example – which constitutes the ethical core of the EU’s Treaty of Lisbon and was fully ratified in December of 2009 – expands earlier EU protections of non-discrimination on the grounds of sexuality and gender identity and represents an expanded and unrivaled international commitment by the EU and its member countries to the equal status of LGBTQI persons in the clinic and beyond. Likewise, significant and recent attention has been paid to queer-specific health concerns from mainstream American organizations such as the IOM (Institute of Medicine), the AMA (American Medical Association), and the Obama Administration. The IOM just recently released its first report exclusively on the status of LGBT health. The AMA has officially advocated for full insurance coverage for transpersons who request sex reassignment. And the Obama Administration has issued a policy guaranteeing the hospital visitation and surrogate rights of same-sex partners. Inarguably, it is part of the mission of bioethics to create awareness of the need for new policies and to demand just and fair treatment for all patients. How unfortunate, then, for bioethicists to find themselves later comers in addressing comprehensively such vital, necessary, and controversial ethical terrain. In general, bioethical inquiries on sexuality and gender identity have been undeniably under-studied, despite numerous pressing and sensitive issues that face a significant and marginalized segment of the clinical population. In surveying the history of bioethics, there have been only a handful of queer issues that have generated intense, extensive scholarship from bioethicists – most notably, policies in regards to intersex children, quarantine and policy-making decisions on AIDS in the earliest years of the epidemic, and debates about the efficacy and necessity of therapeutic treatments of homosexuality in the wake of its removal as a mental aberration from the DSM

Incidental Findings of Nonparentage: A Case for Universal Nondisclosure

We advocate for the incorporation of a new clause into the consent forms for pediatric genetic testing that clearly states that any incidental information about parentage will not be revealed, regardless of the result. Using a case of misattributed maternity, we examine both the pro- and antidisclosure arguments. In the absence of arguments that clearly demonstrate irrevocable harm from nondisclosure and against a backdrop of arguments that compellingly highlight the potential for serious harms from disclosing incidental findings of nonparentage, we advocate for a universal, institution-wide policy of nondisclosure. Our proposed policy of universal nondisclosure not only provides a viable solution to the disclosure dilemma but also empowers patients to know what testing is available to them and to seek it out on their own terms, fully informed. With an easily implemented consent change, clinics can take a clear and firm stance in the disclosure debate. As a result, patients will be protected, policy will be widely understood, and cases will be resolved consistently and clearly.