Equality of Autonomy? Physician Aid in Dying and Supported Decision Making

The legalization of physician aid in dying (“PAID”) has been spreading across the United States and is currently legal in ten jurisdictions. Meant to respect autonomy at the end of life, PAID legislation is modeled after the Oregon Death with Dignity Act, which permits only terminally ill adults with contemporaneous decisional capacity to choose to hasten death with PAID. Right-to-die advocates and legal scholars have critiqued the strict eligibility requirements, which although meant to function as safeguards against mistakes and abuse, can be autonomy thwarting. Advocates and scholars have thus proposed using advance directives for PAID to expand access to this end-of-life option. Such a reform would permit terminally ill persons with moderate dementia or other types of decisional impairments to access PAID.To date, scholars have neglected another possibility for respecting autonomy at the end of life by expanding access to PAID for terminally ill persons with decisional impairments: supported decision-making. Supported decision-making legislation is also spreading across the United States as an alternative to guardianship and surrogate decision-making for persons with cognitive disabilities and is an option in nine jurisdictions. With this model of decision-making, a person with a cognitive disability receives decision-making assistance from supporters to facilitate the exercise of autonomy and retain legal capacity.This Article is the first to address whether terminally ill persons with cognitive impairments should be able to access PAID through supported decision-making. If provided with decision-making support, terminally ill persons with cognitive impairments may be able to elect PAID intentionally, voluntarily, and with understanding; that is, despite their impairments, such persons may be capable of autonomous end-of-life decision-making. This Article thus argues that the principle of equality demands that the law not exclude terminally ill supported persons with decisional impairments from PAID. This Article also argues that supported decision-making is a superior means for terminally ill persons with decisional impairments to access this end-of-life option compared to advance directives, which have numerous and well-documented problems.This Article also considers how PAID and supported decision-making laws interact in the one jurisdiction that currently has both laws, the District of Columbia, and concludes that it may be permissible for a terminally ill person with a decisional impairment, which would otherwise preclude them from accessing PAID, to elect this end-of-life option with assistance from a supporter. The Article ends with considerations for policymakers about building additional safeguards into these laws to ensure that persons with cognitive disabilities do not mistakenly, without understanding, or after the application of undue pressure hasten death through PAID

Dementia, Autonomy, and Supported Healthcare Decisionmaking

Healthcare providers often rely on surrogates to decide on behalf of their patients with dementia who are deemed incapable of exercising autonomy. There is a longstanding debate about the appropriate standard of surrogate healthcare decisionmaking for these patients. Many influential scholars argue that the precedent autonomy of the person with dementia should be respected, and healthcare decision-making laws generally reflect this principle. These laws direct surrogate decisionmakers to follow instructions in living wills or to decide on the basis of the wishes and values of the person before the onset of dementia.But other prominent scholars have questioned whether surrogates should instead use the best interests standard, which accounts for the current interests of the person with dementia. This debate about decision-making standards ignores an arguably more important issue: who should be deciding? Empirical research demonstrates that persons with mild dementia retain the ability to make or participate in decisions despite their acquired cognitive impairments, and that they prefer to be actively involved in healthcare decisionmaking. However, persons with dementia are routinely marginalized in the decision-making process, which leads to a decline in their psychological wellbeing. Based on studies of their decision-making abilities, preferences, and experiences, this Article will argue that persons with dementia should not be prevented from making their own healthcare decisions. Stated differently, persons with dementia should have the legal right to make their own healthcare decisions at the time when the decisions need to be made. Ensuring this right will require looking beyond surrogate-based healthcare decision-making law, which facilitates the exclusion of persons with dementia from decisionmaking. Disability law in six U.S. jurisdictions provides an alternative decision-making model, known as supported decisionmaking, which empowers persons with cognitive impairments to make their own decisions and could be usefully applied to dementia. In supported decisionmaking, an adult with a disability (the “principal”) voluntarily chooses people to assist them in decisionmaking (a “supporter”) and formalizes this arrangement in a written agreement. The supporter’s role is to help the principal gather relevant information, think through the decision, and convey the decision to other people. Supported decisionmaking preserves the legal decision-making authority of a person with a disability rather than transferring such authority to a surrogate. Because supported decisionmaking accords with the preferences and interests of persons with dementia, supported decision-making laws should be widely adopted. This novel application of supported decisionmaking to dementia also provides insight into the nature of autonomy in the larger context of late-life healthcare decisionmaking. My past research has demonstrated that autonomous decisionmaking in this context is relational, which is consistent with supported decisionmaking. This Article will further build upon this conceptualization and advance a new understanding of autonomy in healthcare decisionmaking as more closely approximating relational agency. With this revised understanding of autonomy and the adoption of supported decisionmaking, persons with dementia can remain autonomous for longer in the progression of their disease

A Case for Randomized, Double-Blinded, Sham-Controlled Class III Medical Device Trials

In this paper, I evaluate the ethical implications of the FDA’s move to en-courage randomized, double-blinded, sham-controlled trials for Class III devices when such studies are possible. In Part I, I describe the placebo effect and how researchers control for it. In Part II, I describe the results of studies of medical procedures and devices that have used a sham control. In Part III, I de-scribe the ethical concerns surrounding the use of sham surgeries to study medical devices. In Part IV, I argue for the use of randomized, double-blinded, sham-controlled device trials, and propose an ethical framework for these studies

Torn Between the “Creeds of the Devil”: The German-Finnish Co-Belligerency in World War II

In an article for the Sunday Chronicle in June 1937, Winston Churchill described Nazism and Communism as “the creeds of the devil.” Caught between these two ideologies that “are at each other’s throats,” Finland attempted to remain a sovereign nation. This would prove to be virtually impossible after the November 1939 Soviet invasion of Finland. While Joseph Stalin and his advisors “expected [a] triumphal parade,” the dogged resistance of the Finnish Army and people “turned [that parade] into a bloody three-month war.” Furnished in the crucible of conflict, battling for their very existence as a nation, the Winter War united a previously divided people and forged a united Finnish national identity. Reeling from the destructive war, Finnish leaders strove never to be in the same position again. This context is particularly important when studying the motives of Finnish leaders. Convinced that it was their only viable option and provided with an opportunity to regain what they lost, Finnish leaders pragmatically decided to commit to a co-belligerency with Nazi Germany in the fall of 1940. However, this decision must be placed within its immediate context—the decades preceding the outbreak of World War II and the Winter War. The Finnish leaders and citizens failed to understand not only the nature of warfare on the Eastern Front but also the ramifications of allying with a nation like Nazi Germany. Finland became intertwined with a genocidal war on the Eastern Front, and some of its soldiers participated in Nazi atrocities committed against Jews, civilians, and Soviet prisoners of war. The Finnish-German co-belligerency played a significant role in the history of World War II and especially in Finland’s struggle as a newly independent nation navigating the complex geopolitical environment

End of Life and Autonomy: The Case for Relational Nudges in End-of-Life Decision-Making Law and Policy

Autonomy is a central principle in many areas of health law. In the case of end-of-life decision-making law and policy, however, the principle of autonomy requires revision. On the whole, law conceptualizes autonomy at the end of life as an individual making private, personal decisions based solely on their interests and values, and independent of others. But ordinary people understand autonomous decisionmaking at the end of life differently, in a way that acknowledges the importance of their interpersonal relationships. Social science research has documented that strengthening relationships with others, sharing responsibility in the decision-making process with healthcare providers, and taking care to not burden loved ones become important when confronting death and making decisions at the end of life. The divergence in how law and most people conceptualize autonomy becomes particularly consequential when people do not have decision-making capacity when an end-of-life decision must be made, and have not adequately planned in advance for loss of capacity. Failures of rationality explain this all too common situation: a fear and avoidance of death makes people less likely to plan for it, and even when they do plan, they are unable to anticipate every possible end-of-life scenario and their preferences for each scenario. In such cases, the law provides default processes and standards for end-of-life decisionmaking, which constitute a best guess of a surrogate decision-making process that will effectuate the principle of autonomy. However, in this default decision scheme, relational concerns are often accorded a different weight or valence than most people would prefer as evidenced in empirical studies. For example, state statutes may direct an incapacitated person’s surrogate to make end-of-life decisions in the context of the patient’s religious or moral beliefs but not explicitly instruct surrogates to consider the patient’s relationality. Thus, decisions made at the end of life may not accord with people’s values, preferences, and interests. Paradoxically, therefore, the current defaults in end-of-life law may impede, rather than promote, autonomy. In order to address this unintended consequence and make consistent the purpose and intended outcome of end-of-life decision-making law and policy, which is respect for autonomy, this Article argues for changes to accommodate the relational nature of autonomy at the end of life. Drawing on the law and behavioral economics literature about choice architecture, I argue that relational “nudges” should be built into end-of-life decision-making law and policy. The proposed nudges are meant to combat failures of rationality, promote a relational autonomy, and reduce negative externalities in end-of-life decisionmaking. These nudges would be designed to affect an individual’s end-of-life decisions prior to loss of capacity; a surrogate’s healthcare decisions in the absence of advance directives; and healthcare providers’ shared decisions with the patient or surrogate. While this necessitates changing some defaults, more consequentially, the nudges at the policy level would also change the way information and choices are presented to decisionmakers, such as patients and physicians, to prime the decisionmaker to decide, in part, based on relationality. These changes may increase the likelihood that end-of-life decisions are made in accordance with most persons’ stated preferences—namely that these decisions are shared with and made in consideration of others

Resuscitating Consent

The scholarly focus on autonomy in healthcare decision making largely has been on information about, rather than consent to, medical treatment. There is an assumption that if a patient has complete information and understanding about a proposed medical intervention, then they will choose the treatment their physician thinks is best. True respect for patient autonomy means that treatment refusal, whether informed or not, should always be an option. But there is evidence that healthcare providers sometimes ignore treatment refusals and resort to force to treat patients over their contemporaneous objection, which may be facilitated by the incapacity exception to informed consent requirements. This Article uses the case of treatment over objection to resuscitate analysis of consent. This Article asserts that the nature of autonomy in medical decision making is misunderstood, which can lead to wrongful use of the incapacity exception and subsequent harm. Autonomy has become erroneously conflated with an individual’s capacity for rational decision making, obscuring the reality that the exercise of autonomy is mediated by the body. That is, autonomy is not solely cognitive, but also corporeal. Indeed, bodily integrity is a necessary component of autonomy, and so violating bodily integrity by treating patients over their objection is inconsistent with respect for autonomy. Further, when healthcare providers violate patients’ bodily integrity, there can be significant harms to wellbeing. Moreover, if providers misuse the incapacity exception in order to treat patients over their objection, this nullifies informed consent law. This Article argues that patients should not be treated over their objection even when providers do not perceive refusals to be rational because such treatment is inconsistent with respect for patient autonomy and bodily integrity, promotion of wellbeing, and maintenance of the rule of law. In order to prevent or remedy treatment over objection, this Article argues that states should adopt laws that provide adults with absolute legal capacity to refuse medical treatment unless a court overrides their decision. The proposed law thus would prevent healthcare providers from disqualifying their patients from refusing treatment even when there are questions about the patient’s decisional capacity

When Trauma Disrupts Learning: A Neuroeducation-Informed Professional Learning Experience

This action research study analyzed the creation and implementation of a professional development about trauma, informed by Arwood’s Neuro-semantic Language Learning Theory and Noddings’ ethic of care. The purpose of this study was two-fold. The first was to create a professional learning experience for teachers on trauma to include perspectives from neuroscience, psychology, and language research. The second purpose was to determine if participation in that professional learning experience shifted educators’ beliefs about trauma and learning. I completed two cycles of action research to address each purpose. In the first cycle, I collected qualitative data from five expert panelists’ evaluations on content and process of the professional development presentation. Findings from this cycle indicated that expert panelists from the fields of neuroeducation, trauma, and professional development saw this experience as effective. Using content analysis, I determined changes the expert panelists recommended making to refine the presentation. In the second action research cycle, I refined the professional development and implemented it with 13 participants (6 preservice and 7 inservice educators) over three one-time sessions. Data came from participants’ responses on a needs assessment, case studies, a belief survey, transcribed audio recordings, silent conversations, reflective journals, an evaluation of the experience, and a follow-up survey. Data were analyzed using values, attribute, and magnitude coding to determine categories associated with research questions. Though participants’ beliefs did not change, educators’ attitudes about students with trauma extended to include content information from a neuroeducation lens. Second, at the beginning of the study, most participants had incomplete understandings of the learning process that expanded over the course of the study through the introduction of neuroscience, psychology, and language concepts. Lastly, the participants found the professional development experience met their goals. This study begins to bridge a gap in the burgeoning neuroeducation literature. It also contributes to a new line of work examining professional development as a way to teach educators how to care for students with trauma in the classroom