Abstract: In an effort to address health care disparities in lesbian, gay, bisexual, transgender, and queer (LGBTQ) populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many health care spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in health care encounters. We argue that these negative experiences are produced by a variety of subtle, ostensibly insignificant features of health care spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual (IA)—people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to health care settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, health care institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness.
“The Case of Ms. D: A Family’s Request for Posthumous Procurement of Ovaries for Future Reproduction” Laura Guidry-Grimes Journal of Clinical Ethics, vol. 27, no.1 (Spring 2016): 51-58.
Abstract: The clinical ethics team became involved in a case when a family requested the posthumous removal of a patient’s ovaries for future reproductive use. This case presents a novel question for clinical ethicists, since the technology for posthumous female reproduction is still in development. In the bioethics literature, the standard position is to refuse to comply with such a request, unless there is explicit consent or evidence of explicit conversations that demonstrate the deceased would have wanted this option pursued. Ms D’s case, we suggest, offers an exception to this default position; complying with the family’s request could have been ethically permissible in this case, had it been medically feasible.
Abstract:There has been inadequate philosophical attention to the claims of psychiatric user/survivor activist groups, though these groups represent a significant social justice movement. Many of the core concerns and claims emerging from this activism can be found in disability activism. A first step that must be taken is to question how mental illnesses are modeled. Biomedical modeling is heavily criticized by psychiatric users/survivors for being reductionistic and for perpetuating damaging presumptions about decline and pathology. Social constructionist modeling, on the other hand, tends to be overly dismissive of biological factors that are often at play with these sorts of impairments. A middle ground approach, interactionist modeling, promises to be responsive to demands for recognition from psychiatric users/survivors. I will first outline the core commitments of psychiatric user/survivors. Next, I will evaluate different models for mental illness by bringing together insights from user/survivor and disability activism. I conclude that interactionist modeling holds the best hope for supporting shared decision-making. This type of model braids together the expertise of patients and medical professionals.
"Ethical Bargaining and Parental Exclusion: A Clinical Case Analysis" Laura Guidry-Grimes and Elizabeth Victor Journal of Clinical Ethics, vol. 26, no. 3 (Fall 2015): 250-259.
Abstract:Although in clinical ethics there has been significant attention to when physicians should follow through with a parent’s wishes, there has been much less discussion of the obligation to solicit viewpoints and decisions from all caregivers who have equal moral and legal standing in relation to a pediatric patient. How should healthcare professionals respond when one caregiver dominates decision-making? We present a case that highlights how these problems played out in an ethical bargain. Ethical bargaining occurs when the parties involved choose not to pursue the morally preferable option for the sake of coming to a resolution. This case is not one of parental disagreement; rather, the medical team agreed to exclude the mother from decision-making if the father promised to bring back their son for necessary medical tests. We argue that there is an obligation to notice and acknowledge power asymmetries in the family unit, which in this case manifested as the marginalization of the female decision-maker by the male decision-maker. In these scenarios, clinicians should be careful to avoid treating the parents as one homogenous unit, and they should take action to enable caregiver autonomy and voice. While there are moral and practical limits to how and when physicians should intervene in family dynamics, we discuss the steps that the medical team should have taken in this case to avoid undermining the parental authority of the mother. We conclude by offering recommendations to address and enable caregiver autonomy at an institutional level, and we discuss the importance of tracking and responding to damaging family dynamics so as to prevent ethically impermissible bargaining.
Abstract: Buttercup promised to trust that Westley would return. But he was gone for five years. No word from him for five years! Plus, his ship was attacked by The Dread Pirate Roberts (who, by the way, takes no prisoners). Who could blame her for losing hope? Well, apparently, Westley could. In the guise of his assailant, Westley excoriates Buttercup for her upcoming marriage, mocking her promise to be faithful. Is Westley's outrage rational? Should Buttercup have held fast to hope, despite the overwhelming evidence that Westley was dead? These are questions about responsible belief. Starting with the ancient Greeks, many philosophers have claimed that, in order to be rational, we must follow the evidence wherever it leads and adjust our beliefs accordingly. If our evidence is strong, we should believe strongly; if it is weak, we should believe weakly. And if it is very weak or unclear, we should suspend belief altogether. If we believe without any evidence or against the evidence, we are acting irrationally; we have perhaps even succumbed to wishful thinking, which can ensnare the hopeful believer as thoroughly and quickly as lightning sand. Presumably, we all want to avoid wishful thinking. The world does not bend itself to our desires, whether we wish for a million florins, a miracle pill, or true love’s return. But should we be strictly beholden to evidence? In The Princess Bride, Westley’s attitude toward evidence is very different from Buttercup’s, and he is our hero. Vizzini’s confidence is not entirely unwarranted, yet he is a villain. We cannot help but to admire Inigo’s perseverance and twenty-year conviction that he will avenge his father. And yet, he has hardly any information about the identity of the killer and no evidence that he will find him. So, is there room for rationality in the space between diligently following the evidence and wishful thinking? Could hope be rational even when the evidence doesn’t look promising? And what role do personal values play in the extent to which our beliefs are rational?
Abstract: This case raises a number of ethical flags related to the meaning of LVAD deactivation, the quality of the consent and physician-patient relationship, how to respect a patient’s autonomy with unclear capacity status and apparently mixed wishes, the implications of depression and bipolar disorder for decision-making, and long-term concerns with keeping this patient on the LVAD as a bridge to transplant. We will not delve into all of these ethical issues, though they all deserve consideration, especially given the novel and growing challenges presented by ventricular assist devices. We will take it as a given that deactivating the LVAD is not categorically different from withdrawing other life-sustaining technologies, though we acknowledge there is bioethical disagreement on how to regard the hybrid (partially internal, partially external) status of VADs. Mr. B repeatedly begs for the deactivation of his bridge device, evidently with the understanding that doing so would hasten his death. Every capacitated adult has the legal and ethical right to refuse life-sustaining technologies. In Mr. B’s case, however, we have questions about his capacity and whether following through with his deactivation request would support his actual autonomy interests. In our analysis, we will discuss the complicating factors involved, which are not exhausted by his psychiatric diagnosis.
Abstract: For this case commentary, we provide an ethical analysis of the following case: Ken is a 52 year old man who has lived in a nursing home for the past 15 years. He is severely cognitively impaired, has no known family, and has an appointed guardian. While being transported to a dental visit, Ken is involved in a motor vehicle accident and is taken to a hospital. He is treated for traumatic injuries to the head and neck. After three days of care in the intensive care unit Ken has lost all neurological reflexes and physicians conclude that he will not survive his injuries. They initiate testing to confirm death by neurologic criteria. The organ procurement staff speak with the guardian to discuss whether Ken can be an organ donor (if he is declared dead by neurologic criteria, or after cardiac death).The guardian believes she cannot consent on Ken's behalf for organ donation if Ken has not previously expressed a willingness to donate his organs. An ethics consultation is requested to weigh in on this question.
Abstract:We argue that we have obligations to future people that are similar in kind to obligations we have to current people. Modifying Michael Bratman’s account, we argue that as planning agents we must plan for the future to act practically in the present. Understanding ourselves as relationally autonomous implies that those plans will involve building affiliative bonds and caring for others. We conclude by grounding responsibility to future others by the way we plan through our social institutions. Our account fills out the story of responsibility to future generations by referring only to ourselves, our practical identities, and practical reason.
Abstract: When Police Chief Karen Vick is confronted with Shawn Spencer, a self-proclaimed psychic who promises to help solve unsolvable cases, she faces a quandary: Can she trust Shawn’s claims that he can help bring about justice and make Santa Barbara safer? Even if she decides she can trust him, should she hire him? There are a number of ethical considerations embedded in these questions. In order to trust Shawn in this role, she must have reasonable evidence that he has psychic abilities along with the discipline and motivation necessary to work on cases for the department. In the literature, there is conflicting evidence as to whether a psychic has ever successfully helped solve a crime. However, Shawn has a record of calling in critical tips, and he repeatedly proves his uncanny ability to find unusual leads. But even if Shawn is useful, Vick still has to decide whether hiring him would be prudent. Would taxpayers agree to this use of funds? A 2001 Gallup poll found that 50% of people believe in ESP, and the Santa Barbara community might be even more inclined to believe Shawn’s claims, given the positive publicity he (generally) receives. Is Vick professionally and morally obligated to pursue nontraditional options when standard methods are ineffective or inefficient? Vick also has to consider whether hiring a purported psychic could give families false hope, and her other detectives (like Lassiter) might worry that hiring a psychic mocks their work. In this essay, I will unpack these ethical problems from Vick’s point of view, considering in turn the complex relationships that Shawn has with those in the police department.
Abstract: How can social institutions complicate and worsen vulnerabilities of particular individuals or groups? We begin by explicating how certain diagnoses within mental health and medicine operate as interactive kinds of labels and how such labels can create institutional barriers which hinder one’s capacity to achieve well-being. Interactive kind modeling is a conceptual tool that elucidates the ways in which labeling can signal to others how the labeled person ought to be treated, how such labeling comes about and is perceived, and how it compounds vulnerabilities. We argue that this shift in standpoint helps us recognize and mitigate compounded vulnerabilities.
Abstract: Scientists, clinicians, and bioethicists are worried about how so-called personhood measures would limit access to certain types of contraception, research involving stem cells, and access to fertility treatments. While these measures have been struck down in Colorado, South Dakota, California, and Mississippi, the bill signed into law in Oklahoma in February deserves critical scrutiny, particularly into the ways these legal measures influence eligibility for clinical research. Oklahoma's bill states that the laws of the state “shall be interpreted and construed to acknowledge on behalf of the unborn child at every stage of development all the rights, privileges, and immunities available to other persons, citizens, and residents of this state.”
Works in Progress
"Problems of Clinical Insight When Listening to the Voices of Psychiatric Patients" Laura Guidry-Grimes Revisions in progress Part of a dissertation chapter
Abstract:The question of whether a patient has insight is among the first to be considered in psychiatric contexts. There are several competing conceptions of ‘clinical insight,’ which broadly refers to a patient’s awareness of his/her medical condition. Current accounts generally have more demanding criteria than clinicians used in years past. Insight used to be considered all-or-nothing and unidimensional. Insight is now viewed more as a multidimensional and continuous construct. The precise specifications of the dimensions appear inadequate for providing clear guidance, though. Data on which groups of psychiatric patients tend to lack insight have changed dramatically over the years. Studies also give contradictory evidence regarding the frequency and consequences of poor insight. For example, some researchers claim that all psychiatric conditions compromise insight; others suggest that poor insight is only present in psychosis. Several studies find no correlation between level of insight and severity of psychopathology, but others come to the opposite conclusion. A number of crucial questions remain unanswered or fiercely debated. Given the conceptual ambiguities associated with insight determinations, there are significant ethical concerns about how patients’ decisions are weighed and evaluated in psychiatric care. Patients’ concerns about having their status as knowers denigrated can result in their distrust of clinicians, which in turn can hurt treatment compliance. After outlining some of the key disagreements in the literature about what clinical insight means, I will suggest ways in which clinical ethics services can contribute to therapeutic alliance building for patients whose insight level is uncertain.
"When the Organ Feels Alien: Identifying Barriers to Patient-Centered Care and Treatment Adherence for Transplant Recipients" Laura Guidry-Grimes
Abstract: Among healthcare professionals who care for transplant patients, a well-known problem is that some of these patients will struggle to adhere to all medically recommended post-operative care. For example, patients might not follow through with immunosuppressants to reduce rejection risks, accept regimentation for in-hospital convalescence, or take all the necessary steps to respond to medical complications promptly and adequately. This problem can cause considerable distress among medical teams and clinical ethicists, since organs are viewed as rare gifts, and there is an understandable desire to try to prolong the usefulness of donated organs for as long as possible. As a result, ethicists might witness physicians inclined toward various forms of paternalistic measures in order to maximize chances of the post-transplant patient receiving all needed medical care. Non-adherence could stem from several potential sources, but we narrow our investigation to the potential for bodily alienation post-transplant. By “bodily alienation,” we are referencing the feeling that one’s body is simultaneously hers and not hers, split between past and current/future states, or imprisoning her true needs and interests. These feelings can be exacerbated when the transplant occurs in the context of traumatic or sudden illness, when support systems fail, when additional stressors make recovery and adaptation to bodily changes harder to handle, when there are concomitant actual or perceived losses of control, and when the patient felt pressured into the surgery. All of these scenarios pose red flags for clinical ethicists in trying to prevent and mitigate dilemmas that arise for this patient population. When post-transplant patients confront obstacles to having their full range of autonomy interests respected or solicited, their sense of bodily alienation can be perpetuated. In these instances, the organ increasingly becomes a locus for feeling estranged from one’s own body, even as the patient is forced to be continually aware of its pains, risks, and imposed limitations. After unpacking this barrier to patient-centered care and treatment adherence, we discuss the role of clinical ethicists in foreseeing and responding to patients in this predicament.
"Relational Autonomy in Action: Enabling Sexuality for Residents with Dementia" Elizabeth Victor and Laura Guidry-Grimes Revisions in progress
Abstract: By combining the lenses of disability studies and feminist philosophy, we shed light on some of the conceptual and practical complexities associated with enabling the sexual autonomy of individuals with dementia who are in a daily position of dependency. The diagnosis of dementia can lead to questions about capacity and trigger uncertainty among caregivers in relation to their obligations when residents express sexual preferences. We argue that capacity determinations need to take into account the long-ranging harms that can result from the continual denial of sexual autonomy, given its importance for most people’s well-being, self-expression, and identity formation. A holistic picture of well-being and relational view of autonomy can help prevent over-idealizations of what human beings need for the promotion of agency. Especially when someone faces changes to her mentation and living environment, additional limitations or stigmas can imperil what remains of the resident’s narrative self-conception. However, given concerns about the vulnerabilities of this population, caregivers’ responsibilities will be intricate and contextual. We provide key conceptual clarifications that are needed to analyze the contours of these obligations, and we suggest what moral considerations are relevant for institutional policies.
"What Does It Mean to Care about a Mode of Being?" Laura Guidry-Grimes Part of a dissertation chapter
Abstract: For many members of the disabled community, the mode of being characterized by their particular disability holds value for them. For these individuals, they would not take a “magic pill” to rid themselves of their condition. But what does it mean to care about one’s mode of being? We can think of ‘mode of being’ as referring to a loosely correlated cluster of activities, lifestyle choices, freedoms, limitations, and lived (as opposed to idealized or non-actualized) priorities that largely contribute to someone’s everyday experiences and actions, which in turn shape that person’s sense of self and sense of belonging. Since the beginning of these movements, disability activists and psychiatric users/survivors have argued that modes of being that are not able-bodied or able-minded can have value or meaning to those who experience them. As such, they can care about these modes of being, which is supposed to imply that there are prima facie obligations to respect this form of diversity and to set up the conditions necessary for those modes of being to be enjoyed or pursued. These prima facie obligations have positive and negative dimensions to them, since there will be calls for non-interference as well as the provision of certain legal and social protections. Not all modes of being, when presented by an individual or group, will have this normative implication, however. An initial question to be raised is whether the mode of being is cared about in the right way. In other words, for the above cited normative implication to hold, the mode of being needs to have a particular value for the individual; the satisfaction of brute, ephemeral, fungible, or run-of-the-mill desires will not be sufficient for the mode of being to qualify for demands of recognition. The following question will arise time and again: Has the mode of being been subjected to the right kind of assessment by the individual who wants it respected? I will argue, following Agnieszka Jaworska, that it is enough for the mode of being to be cared about by the agent. Caring is a special kind of investment on the part of an agent. It is a complex investment that incorporates a number of attitudes and emotional attunements that are responsive to the fate of the object of caring. This kind of emotional attunement directs an agent’s actions, intentions, affective responses, and end-setting. Carings are inherently internal, which separate them from other psychological happenings. Carings matter on Jaworska’s account because of how these types of preferences play into the unification of agency and how they signify someone’s personhood status.
"Demands for Recognition among Psychiatric Users/Survivors" Laura Guidry-Grimes Part of a dissertation chapter
Abstract:By and large, philosophical scholarship has not taken much notice of the psychiatric user/survivor movement, even though it began in the 1970s and even though the activists believe that they are pushing an important civil rights and human rights agenda. I will focus on how their demand for recognition parallels a similar demand among disability rights advocates. Recognition, as a moral and political aim, involves more than mere acknowledgement of difference; rather, it involves positive accommodations and reevaluating what the needs and interests of this population are from their own point of view. First-person accounts and more than tokenistic participation are thus required. Nancy Fraser’s status model illuminates how cultural patterns and institutional forces can lead to exclusion, invisibility, and layered subordination. For disability activists and psychiatric user/survivors, the call for recognition is tied to the having their right to self-definition respected and varied modes of being (i.e., those that are not able-bodied and able-minded) accepted and accommodated. Although there are parallels in what recognition means for the physically disabled and psychiatrically disabled, there are distinctive challenges for psychiatric users/survivors. These challenges arise in virtue of the fact that these mental health conditions can, to different degrees, compromise capacities that are necessary for epistemic and agential standing. As a result, the first-person reports and self-definition claims coming from this population will face immediate scrutiny, and this scrutiny will not always take into account the vast heterogeneity of mental health conditions or the particularities of the agents. Psychiatric users/survivors, through their demands for recognition, are challenging presumptive distrust of their first-person reports, and they are calling for increased participation and respect at institutional and interpersonal levels. A Strawsonian framework will help unpack what the duty of recognition means interpersonally.
"End of Life Decisions for Individuals with Profound Intellectual Disabilities" Laura Guidry-Grimes, Carol Taylor, Marisa Brown, and Erin Leveton Research funded through a Georgetown Complex Moral Problems Grant
Abstract: Our study analyzes and evaluates how guardians make end-of-life decisions for individuals with profound intellectual disability (PID) who have never had decisional capacity. This project explores two unique features of the moral problems associated with these decisions. The first is the complexity in identifying the best interests of the ward when, due to the PID, he or she has never had the ability to describe his/her wishes. In these instances, family members, lawyers, or other social service professionals are given the status of guardian and may be vested in making decisions that can either hasten or prolong the end-of-life process. We discuss some common questions and concerns associated with this “gold standard” of surrogate decision-making when applied to these individuals. For example, there are worries about surrogates completely de-personalizing the best interest standard, not making a concerted effort to determine the ward’s preferences (to the extent they might exist), or simply deferring to medical judgment without critical reflection. Further, disability advocates express concerns about healthcare professionals and surrogates not being sensitive to the subtle ways in which wards with PID could communicate. The second unique feature to be explored is developing an understanding of how these decisions are made and should be made within a patient-centered framework. In response to these challenges, we have surveyed local guardians about their experiences making end-of-life decisions for this population, and we solicited their thoughtful responses to case vignettes. This research was done with assistance from scholars, lawyers, and disability advocates. Additionally, we have constructed a web-based toolkit to assist guardians tasked with making decisions for wards with PID. In creating this resource, we incorporated insights from our advisory committee and from aspiring legal professionals. Based on this input and our research, we determined what would be most helpful to guardians who are making these decisions. The toolkit includes frequently asked questions (and answers), ethics work-up guidance, case studies, literature review, case law overview, a guided interview for surrogates, a glossary of key terms and concepts, and a worksheet for discerning which conditions might be worse than death. Our toolkit highlights the ways in which guardians can take advantage of clinical ethics support services, including ethics committees. For those involved in clinical ethics consultation, our research and toolkit have utility as well, since we address some of the core sources of moral distress when making end-of-life decisions for individuals with PID.
"What Do They Know? Evaluating Professional Expertise and Patient Expertise" Jamie Watson and Laura Guidry-Grimes
Abstract:What qualifies someone as an authoritative expert on a subject matter? This question has implications for how clinical ethicists ought to evaluate and weigh conflicting claims of expertise coming from medical professionals on the one side (in cases when they agree) and patients on the other side. These conflicts can arise in numerous cases, though we will focus on arguments made from certain disability activists and scholars, who insist that individuals with disabilities have epistemic privilege into the meaning and value of living with a disability. They contend that their expertise is distinctive, and shared decision-making in clinical contexts cannot be achieved if medical expertise exclusively frames what constitutes disability. Unpacking the notion of patient expertise will prove tricky, though, given common views of the nature of expertise. Based on a dominant account, having a certain number of true beliefs in the subject is a necessary condition for expertise. This condition is motivated by the idea that expert testimony puts subjects in a better position than non-expert testimony to obtain true beliefs and, therefore, knowledge about a subject matter. In cases of conflict, this line of reasoning could potentially justify downgrading patients’ knowledge claims about their condition, since patients generally do not have the same level of scholarship or scientific background as clinicians for assessing their condition. However, there are some critical problems for this truth-based view of expertise. We instead champion a novel account, according to which the bar for expertise consists in understanding how to justify claims within the subject matter and how to make appropriate contributions. We show that this view of expertise allows us to acknowledge numerous sources of authoritative expertise, which means that patients can indeed claim to have more than mere opinions of their condition or disability; they can be said to have expertise that challenges prevalent presumptions about their quality of life, prospects, and best interests. This analysis leads to a discussion of how clinical ethicists ought to navigate competing knowledge claims without simply deferring to medical professionals at the sacrifice of patients’ authoritative expertise.
"The Other Side of the Magic Fire: An Exploration of Jewish Bioethics through Twilight of the Golds" Religion Honors Thesis, Florida State University, 2008 Committee: Aline Kalbian, Martin Kavka, and David McNaughton