Jared Smith

In lieu of an abstract, here is a brief excerpt of the content:Difficult, Difficult, Lemon, DifficultMaggie TaylorI like to joke that my husband is a lemon—he suffers from manufacturing defects that prevent his body from functioning as intended. Illnesses other 40-somethings recover from quickly are things that land him in the hospital for weeks on end. So, it was no surprise last year that an epileptic seizure led to aspiration pneumonia, admission to the lCU, intubation, multisystem organ failure, and a Helivac ride to a regional hospital for a higher level of care. I was told that his odds of survival were about fifty-fifty. At the time, I was training as a clinical ethics fellow, still relatively inexperienced but savvy enough to guess the true likelihood was probably lower. Doctors don’t usually like telling brutal truths to families.But the moral complexities of his treatment did not arise when he was on the verge of death. They came days later when he was getting better. He’d survived a major surgery, come off pressors, recovered from an acute kidney injury, did well on spontaneous breathing trials (SBTs), and tolerated sedation weaning. Ironically, this was the hardest part of the hospitalization for me. Some people tolerate endotracheal tubes. Others don’t. My husband is in the latter group. He’d even self-extubated on a prior hospitalization. This time, he was too weak to lift his arms. Instead of pulling at the tube taped to his face, he stared up at me with wild eyes that said I don’t know what’s happening but I hate it; make it stop.As his discomfort became more apparent, I pressed the intensivist, Dr. Roja1, about extubating. “He’s alert, following commands, and hit the benchmarks on his vent settings.”Dr. Roja responded by saying she didn’t feel my husband was ready. They would continue conducting SBTs and reevaluate the next day.She said the same thing the next day.And the next day. Then she suggested a trach evaluation. I rejected Dr. Roja’s proposed compromise. Forcefully.It wasn’t just that I had trouble seeing my husband in this state of confusion and discomfort, although I did. I also knew continued vent dependence was something he would not accept. Over the course of our relationship, we’ve talked a lot about what interventions my husband would tolerate under various circumstances. This makes sense, given my profession and his health problems. He doesn’t want to live no matter the costs, but only if he can do so without being a burden on those he loves or dependent on machinery long-term—which, for him, means a few weeks.This is what I told Dr. Roja. At least, this is what I think I told her. It’s doubtful I stated my reasoning [End Page 28] half that clearly, given my emotional, physical, and cognitive state. It had been two weeks since my husband was admitted, and I was depleted. I was living in a hotel across from the hospital, wasn’t eating, and had fallen back into the vice of smoking cigarettes. Exhaustion and stress had made me combative: I had to defend my husband against this doctor who refused to do the right thing and take the tube out.In what felt like a last-ditch effort to get me off her back, Dr. Roja suggested an ethics consult. It was embarrassing that the intensivist was the one to suggest ethics involvement. Consumed as I was by my job as my husband’s advocate, I had forgotten my actual job.The team was able to put together a family meeting within hours. Beforehand, the ethicist came to my husband’s room and introduced herself to me and my mother.“I work in ethics too, as a clinical ethics fellow,” I said.She responded: “Oh.”That was all. Not even a word, but a sound. I don’t know what response I wanted, but that wasn’t it. This made me suspicious of the process.My mother and I joined the ethicist, Dr. Roja, and a palliative care physician in the family room. Dr. Roja led with a summary of my husband’s clinical condition...

IntroductionDeep brain stimulation (DBS) is utilized to treat pediatric refractory dystonia and its use in pediatric patients is expected to grow. One important question concerns the impact of hope and unrealistic optimism on decision-making, especially in “last resort” intervention scenarios such as DBS for refractory conditions.ObjectiveThis study examined stakeholder experiences and perspectives on hope and unrealistic optimism in the context of decision-making about DBS for childhood dystonia and provides insights for clinicians seeking to implement effective communication strategies.Materials and MethodsSemi-structured interviews with clinicians (n = 29) and caregivers (n = 44) were conducted, transcribed, and coded.ResultsUsing thematic content analysis, four major themes from clinician interviews and five major themes from caregiver interviews related to hopes and expectations were identified. Clinicians expressed concerns about caregiver false hopes (86%, 25/29) and desperation (68.9%, 20/29) in light of DBS being a last resort. As a result, 68.9% of clinicians (20/29) expressed that they intentionally tried to lower caregiver expectations about DBS outcomes. Clinicians also expressed concern that, on the flip side, unrealistic pessimism drives away some patients who might otherwise benefit from DBS (34.5%, 10/29). Caregivers viewed DBS as the last option that they had to try (61.3%, 27/44), and 73% of caregivers (32/44) viewed themselves as having high hopes but reasonable expectations. Fewer than half (43%, 19/44) expressed that they struggled setting outcome expectations due to the uncertainty of DBS, and 50% of post-DBS caregivers (14/28) expressed some negative feelings post treatment due to unmet expectations. 43% of caregivers (19/44) had experiences with clinicians who tried to set low expectations about the potential benefits of DBS.ConclusionThoughtful clinician-stakeholder discussion is needed to ensure realistic outcome expectations.

Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process entails and what factors determine patient involvement in the process. However, there is agreement that children have a right to bodily and brain integrity, which should only be infringed upon in rare circumstances.

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD.

Four Views on Free Will is a robust and careful debate about free will, how it interacts with determinism and indeterminism, and whether we have it or not. Providing the most up-to-date account of four major positions in the free will debate, the second edition of this classic text presents the opposing perspectives of renowned philosophers John Martin Fischer, Robert Kane, Derk Pereboom, and Manuel Vargas. Substantially revised throughout, this new volume contains eight in-depth chapters, almost entirely rewritten for the new edition, in which the authors state their different positions on the debate, offer insights into how their views have evolved over the past fifteen years, respond to recent critical literature in the field, and interact and engage with each other in dialogue. In the first four chapters the authors defend their distinctive views about free will: libertarianism, compatibilism, hard incompatibilism, and revisionism. The subsequent four chapters consist of direct replies by each of the authors to the other three.

_The Bloomsbury Guide to Philosophy of Disability_ is a revolutionary collection encompassing the most innovative and insurgent work in philosophy of disability. Edited and anthologized by disabled philosopher Shelley Lynn Tremain, this book challenges how disability has historically been represented and understood in philosophy: it critically undermines the detrimental assumptions that various subfields of philosophy produce; resists the institutionalized ableism of academia to which these assumptions contribute; and boldly articulates new anti-ableist, anti-sexist, anti-racist, queer, anti-capitalist, anti-carceral, and decolonial insights and perspectives that counter these assumptions. This rebellious and groundbreaking book's chapters–most of which have been written by disabled philosophers–are wide-ranging in scope and invite a broad readership. The chapters underscore the eugenic impetus at the heart of bioethics; talk back to the whiteness of work on philosophy and disability with which philosophy of disability is often conflated; and elaborate phenomenological, poststructuralist, and materialist approaches to a variety of phenomena. Topics addressed in the book include: ableism and speciesism; disability, race, and algorithms; race, disability, and reproductive technologies; disability and music; disabled and trans identities and emotions; the apparatus of addiction; and disability, race, and risk. With cutting-edge analyses and engaging prose, the authors of this guide contest the assumptions of Western disability studies through the lens of African philosophy of disability and the developing framework of crip Filipino philosophy; articulate the political and conceptual limits of common constructions of inclusion and accessibility; and foreground the practices of epistemic injustice that neurominoritized people routinely confront in philosophy and society more broadly. A crucial guide to oppositional thinking from an international, intersectional, and inclusive collection of philosophers, this book will advance the emerging field of philosophy of disability and serve as an antidote to the historical exclusion of disabled philosophers from the discipline and profession of philosophy. The Bloomsbury Guide to Philosophy of Disability is essential reading for faculty and students in philosophy, disability studies, political theory, Africana studies, Latinx studies, women's and gender studies, LGBTQ studies, and cultural studies, as well as activists, cultural workers, policymakers, and everyone else concerned with matters of social justice.