In their article, Navin, Brummett, and Wasserman (2022) advance the idea that there are qualitatively different types of decision-making capacity (DMC) for treatment refusals. Departing from what t...

Volume 20, Issue 8, August 2020, Page 88-90.

Discussion of supported decision making has been dominated by legal scholars, philosophers, and advocates for persons with disabilities. Peterson et al.’s primary contribution is introducing...

Shavelson and colleagues (2023) describe how medical aid-in-dying laws in the United States prohibit assistance in administering aid-in-dying medication. This prohibition distinguishes aid in dying...

Marshall and colleagues (2024) contribute to the literature on autonomy and decision-making capacity by focusing on the case of individuals with opioid use disorder who refuse to remain in the hosp...

Pickering, Newton-Howes, and Young assert that the traditional view of decisional capacity, premised on assessing patients’ abilities to communicate, understand, appreciate,...

Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy (...) and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions. (shrink)

McCarthy and Howard (2023) advocate for supported decision making for patients with intellectual and developmental disabilities (IDD). Departing from the “mental prosthesis” model of supported deci...

Incapacitated adults with a legally appointed guardian or conservator may be recruited for or involved with medical, behavioral, or social science research. Much of the research in which such persons participate is aimed at evaluating medical interventions for them, or contributing to general knowledge about disorders from which they may suffer. In this paper we will consider how the appointment of guardians for patients with disorders of consciousness —severe brain injuries that affect a patient’s level of arousal and ability to (...) interact —impacts such patients’ access to research.Such persons may be under guardianship because they have lost decisional capacity (i.e., those in a coma or... (shrink)

This is the first article in a two-part series describing subject and family perspectives from the central thalamic deep brain stimulation for the treatment of traumatic brain injury using the Medtronic PC + S first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury, with subjects who were deemed capable of providing voluntary informed consent. In this article, we report on interviews conducted prior to surgery wherein we asked participants about their experiences recovering from (...) brain injury and their perspectives on study enrollment and participation. We asked how risks and benefits were weighed, what their expectations and fears were, and how decisions were reached about trial participation. We found that informed consent and enrollment decisions are fraught. Subjects and families were often split, with subjects more focused on putative benefits and families concerned about incremental risk. Both subjects and families viewed brain injury as disruptive to personal identity and relationships. As decisions were made about study enrollment, families struggled with recognizing the re-emergent agency of subjects and ceding decision-making authority to subjects who had previously been dependent upon them for protection and guidance. Subjects and family members reported a hope for the relief of cognitive disabilities, improved quality of life, normalization of interpersonal interactions, and a return to work or school as reasons for study participation, along with altruism and a desire to advance science. Despite these aspirations, both subjects and families appreciated the risks of the intervention and did not suffer from a therapeutic misconception. A second essay to be published in the next issue of Cambridge Quarterly of Healthcare Ethics—Clinical Neuroethics will describe interviews conducted after surgery, the effects of cognitive restoration for subjects, families, and challenges presented to the social structures they will call upon to support them through recovery. This subsequent article will be available online prior to its formal publication in October 2023. (shrink)

In January 2016, Medicare began reimbursing clinicians for time spent engaging in advance care planning with their patients or patients’ surrogates. Such planning involves discussions of the care an individual would want to receive should he or she one day lose the capacity to make health care decisions or have conversations with a surrogate about, for example, end‐of‐life wishes. Clinicians can be reimbursed for face‐to‐face explanation and discussion of care and advance directives and for the completion of advance care planning (...) forms. Although it seems that political barriers to reimbursement for such planning have largely faded, the Medicare policy's impact on provider billing practices appears to be limited, suggesting other barriers to clinician engagement in advance care planning. Additionally, the effects of this policy on patient behavior and the clinician‐patient relationship are not yet known. (shrink)

Volume 24, Issue 8, August 2024, Page 121-123.

Pullman (2023) compares medically-assisted dying (MAiD) laws and rates of medically-assisted deaths in Canada and California, noting some differences in the legal regime and a higher rate of MAiD i...

The payment of human subjects is an area where Institutional Review Boards have wide discretion. Although the “Common Rule” requires the provision of full information to human research participants to secure valid consent, the Rule is silent on the issue of payment. Still, some federal agencies offer guidance on the matter. For example, the National Science Foundation cautions that high payments for risky research “may induce a needy participant to take a risk that they normally would prefer not to take.” (...) For research under its purview, the Food and Drug Administration guidance provides that “[a]dvertisements may state that subjects will be paid, but should not emphasize the payment or the amount to be paid, by such means as larger or bold type.” One might read the FDA guidance to permit the advertisement for human subjects to state the specific amount of payment, as long as it is not emphasized. (shrink)

As improvements in neuroscience have enabled a better understanding of disorders of consciousness as well as methods to treat them, a hurdle that has become all too prevalent is the denial of coverage for treatment and rehabilitation services. In 2011, a settlement emerged from a Vermont District Court case, Jimmo v. Sebelius, which was brought to stop the use of an “improvement standard” that required tangible progress over an identifiable period of time for Medicare coverage of services. While the use (...) of this standard can have deleterious effects on those with many chronic conditions, it is especially burdensome for those in the minimally conscious state, where improvements are unpredictable and often not manifested through repeatable overt behaviors. Though the focus of this paper is on the challenges of brain injury and the minimally conscious state, which an estimated 100,000 to 200,000 individuals suffer from in the United States, the post-Jimmo arguments presented can and should have a broad impact as envisioned by the plaintiffs who brought the case on behalf of multiple advocacy groups representing patients with a range of chronic care conditions. (shrink)

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects met (...) a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study’s success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives. (shrink)

Patient narratives from two investigational deep brain stimulation trials for traumatic brain injury and obsessive‐compulsive disorder reveal that injury and illness rob individuals of personal identity and that neuromodulation can restore it. The early success of these interventions makes a compelling case for continued post‐trial access to these technologies. Given the centrality of personal identity to respect for persons, a failure to provide continued access can be understood to represent a metaphorical identity theft. Such a loss recapitulates the pain of (...) an individual's initial injury or illness and becomes especially tragic because it could be prevented by robust policy. A failure to fulfill this normative obligation constitutes a breach of disability law, which would view post‐trial access as a means to achieve social reintegration through this neurotechnological accommodation. (shrink)

Deaths of Despair (DoD), or mortality resulting from suicide, drug overdose, and alcohol-related liver disease, have been rising steadily in the United States over the last several decades. In 2020, a record 186,763 annual despair-related deaths were documented, contributing to the longest sustained decline in US life expectancy since 1915–1918. This forum feature considers how health humanities disciplines might fruitfully engage with this era-defining public health catastrophe and help society better understand and respond to the crisis.

In our article, we share the lessons we have learned after creating and running a successful legal laboratory over the past seven years at Yale Law School. Our legal laboratory, which focuses on the intersection of law and severe brain injury, represents a unique pedagogical model for legal academia, and is closely influenced by the biomedical laboratory.

Volume 24, Issue 8, August 2024, Page 121-123.

Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

This study investigates the role that moral identity, religiosity, and the institutionalization of ethics play in determining the extent of justification of norm violating behavior among business practitioners. Moral justification is where a person, rather than assuming responsibility for an outcome, attempts to legitimize ethically questionable behavior. Results of the study indicate that both the internalization and symbolization dimensions of moral identity as well as intrinsic religiosity and the explicit institutionalization of ethics within the organization are significant determinants of the (...) moral justification of unethical behaviors. (shrink)

Name der Zeitschrift: Apeiron Jahrgang: 47 Heft: 2 Seiten: 230-244.

Many students experience mathematics as ahistorical and acultural. We review the philosophical roots of this experience and pose alternatives. We argue that there is evidence that the inclusion of a historical dimension into the teaching of mathematics courses at all levels, combined with an ‘active’ approach to learning, will improve motivation and achievement.

People may exhibit two kinds of modifications when demonstrating action for others: modifications to facilitate bottom‐up, or sensory‐based processing; and modifications to facilitate top‐down, or knowledge‐based processing. The current study examined actors' production of such modifications in action demonstrations for audiences that differed in their capacity for intentional reasoning. Actors' demonstrations of complex actions for a non‐anthropomorphic computer system and for people (adult and toddler) were compared. Evidence was found for greater highlighting of top‐down modifications in the demonstrations for the (...) human audiences versus the computer audience. Conversely, participants highlighted simple perceptual modifications for the computer audience, producing more punctuated and wider ranging motions. This study suggests that people consider differences in their audiences when demonstrating action. (shrink)

Although the quality and effectiveness of mental health treatments and services have improved greatly over the past 50 years, therapeutic revolutions in psychiatry have not yet been able to reduce stigma. Stigma is a risk factor leading to negative mental health outcomes. It is responsible for treatment seeking delays and reduces the likelihood that a mentally ill patient will receive adequate care. It is evident that delay due to stigma can have devastating consequences. This review will discuss the causes and (...) consequences of stigma related to mental illness. (shrink)

This research explored the ethical decision-making process of civilians in response to real-world military dilemmas. Results revealed the complexity of these dilemmas, with about equal proportions of civilians choosing each of two response options. The moral intensity dimension of social consensus significantly predicted moral judgment in both dilemmas, whereas that of magnitude of consequences did so in only one dilemma, partially supporting our hypothesis. Both dimensions were significant predictors of moral intent in both dilemmas as was moral judgment, also supporting (...) our hypotheses. We conclude with suggestions for future research questions in this compelling area. (shrink)

The consequences of stigma are preventable. We argue that individual attention should be provided to patients when dealing with stigma. Also, in order to deal with the impact of stigma on an individual basis, it needs to be assessed during routine clinical examinations, quantified and followed up to observe whether or not treatment can reduce its impact. A patient-centric anti-stigma programme that delivers the above is urgently needed. To this end, this review explores the experiences, treatment barriers and consequences due (...) to stigma. We also offer putative solutions to this problem. (shrink)

Revised versions of papers presented at the 1994 Tyndale Fellowship jubilee conference held in Hayes Conference Centre, Swanwick.

PurposeThe purpose of this paper is to discuss whether existing organisations that seek to integrate a range of stakeholders in the field of information and communication technology and ageing are adequately meeting the needs of each of these stakeholder groups, and to determine whether a new, or re‐organised, mechanism is needed to better meet the needs of stakeholders.Design/methodology/approachThe authors identify, describe, assess and compare the adequacy of various candidate multi‐stakeholder mechanisms in order to improve stakeholder co‐operation.FindingsThe authors' principal finding is (...) that the stakeholder co‐ordination mechanisms discussed in this paper are not adequate to foster e‐inclusion co‐operation, co‐ordination and collaboration among all different types of stakeholders.Practical implicationsThis analysis offers direction in how a new organisation, or the expansion of an existing mechanism, could ensure that currently un‐met needs are addressed. The strengths and weaknesses of the stakeholder co‐ordination mechanisms discussed here demonstrate that some organisational types are better for performing certain tasks and for integrating particular types of stakeholder. Thus, a federated, multi‐dimensional organisation offers one possibility for addressing the needs of all different types of stakeholders.Originality/valueThis paper provides an avenue of response to various calls for closer stakeholder collaboration by the European Commission and other stakeholders, in order to improve the quality of life for older persons and to meet European social objectives. (shrink)