Residency Requirements for Medical Aid in Dying.

In 1997, when Oregon became the first U.S. jurisdiction authorizing medical aid in dying (MAID), its law included a requirement that patients be legal residents of the state. Other U.S. jurisdictions legalizing MAID followed Oregon in adopting residency requirements. Recent litigation challenges the legality, as well as the justification, for such requirements. Facing such challenges, Oregon and Vermont eliminated their MAID residency requirements. More states could follow this move, for, in certain circumstances, the U.S. Constitution's privileges and immunities clause protects citizens' right to travel to secure medical care. Policy considerations could also motivate states to reexamine whether such requirements are justified in light of existing evidence of how MAID laws have been applied.

Cruzan after Dobbs: What Remains of the Constitutional Right to Refuse Treatment?

In 2022, the U.S. Supreme Court removed constitutional protection from the individual's right to end a pregnancy. In Dobbs v. Jackson Women's Health Organization, the Court invalidated previous rulings protecting that right as part of the individual liberty and privacy interests embedded in the U.S. Constitution. Now, many observers are speculating about the fate of other rights founded on those interests. The Dobbs ruling conflicts with the Court's 1990 Cruzan decision restricting the government's power to interfere with personal medical choices. The language and reasoning in Dobbs and Cruzan offer guidance on how the Court might address future cases involving the right to refuse life-sustaining treatment. The decisions also point to policy strategies for preserving that right.

Ourselves, with Dementia.

Fear of dementia leads some people to demand an opportunity to choose death over life with the illness. They want the power to make advance euthanasia directives and to refuse hand feeding at some point in the dementia process. But the choices we make in advance aren't always suited to the people we become. Experts and family members say people with dementia often adapt, becoming content with their lives. People should care about their future selves with dementia. Their advance instructions about dementia care should give others freedom to respond to the up-to-date information required for good medical decision-making.

The UN Challenge to Guardianship and Surrogate Decision-Making.

In 2006, the United Nations issued the Convention on the Rights of Persons with Disabilities. The Convention, together with an accompanying commentary, urges governments to abandon laws authorizing guardianship and substitute decision-making for people with intellectual disabilities and to replace them with supportive decision-making laws that give all individuals the freedom to make choices reflecting their "will and preferences." Although critics point to ethical and legal problems with this approach, the Convention and commentary offer guidance to clinicians, ethicists, and others involved in evaluating medical decision-making. Whether or not it leads to formal legal action, the Convention rightly urges us to give people with cognitive impairments a greater role in decisions about their lives.

A Tangled Web: Deception in Everyday Dementia Care.

Care workers and families often engage in deception in everyday interactions with people affected by dementia. While benevolent deception can be justified, there are often more respectful and less risky ways to help people with dementia seeking to make sense of their lives.

The Limited Value of Dementia-Specific Advance Directives.

Many people are worried about developing dementia, fearing the losses and burdens that accompany the condition. Dementia-specific advance directives are intended to address dementia's progressive effects, allowing individuals to express their treatment preferences for different stages of the condition. But enthusiasm for dementia-specific advance directives should be tempered by recognition of the legal, ethical, and practical issues they raise. Dementia-specific advance directives are a simplistic response to a complicated situation. Although they enable people to register their future care preferences, in many cases, those preferences will not, and should not, determine their later care.

Dementia and the Death Penalty.

During its 2018-2019 term, the United States Supreme Court considered the constitutionality of executing a prisoner with dementia. In Madison v. Alabama, the Court ruled that, in certain circumstances, executing a prisoner with dementia violates the Eighth Amendment's ban on cruel and unusual punishment. Vernon Madison was sentenced to death for killing a police officer in 1985. After many years on Alabama's death row, he had a series of strokes and was diagnosed with vascular dementia. In 2016, Madison's lawyers unsuccessfully sought a stay of execution, arguing that, in light of his cognitive impairments, imposing the death penalty would violate the Constitution. After Alabama set a 2018 execution date, lawyers returned to the state court, arguing that the finding of competence should be reversed because Madison's cognitive impairments had worsened. When the trial court refused to grant the stay of execution, Madison's lawyers asked the Supreme Court to review the constitutionality of the state court decision.

The Reasonable Person Standard for Research Disclosure: A Reasonable Addition to the Common Rule.

The revised Common Rule adopts the reasonable person standard to guide research disclosure. Some members of the research community contend that the standard is confusing and ill-suited to the research oversight system. Yet the revised rule is not as radical as it might seem. During the 1970s, judges started using the standard to evaluate negligence claims brought by injured patients who said doctors had failed to obtain informed consent to the harmful procedures. In its influential Belmont Report, the National Commission recommended application of a "reasonable volunteer standard" to guide IRBs evaluating research disclosures. Evidence also suggests that IRBs often invoke the reasonable person standard in deliberations about consent forms. But past application of the standard has been informal and uneven. Robust application of the reasonable person standard will require researchers and IRBs to learn more about what ordinary people want and need to know about the studies they are invited to join. Input from people with personal experience as study participants could be particularly useful to this effort.

Advance euthanasia directives: a controversial case and its ethical implications.

Authorising euthanasia and assisted suicide with advance euthanasia directives (AEDs) is permitted, yet debated, in the Netherlands. We focus on a recent controversial case in which a Dutch woman with Alzheimer's disease was euthanised based on her AED. A Dutch euthanasia review committee found that the physician performing the euthanasia failed to follow due care requirements for euthanasia and assisted suicide. This case is notable because it is the first case to trigger a criminal investigation since the 2002 Dutch euthanasia law was enacted. Thus far, only brief descriptions of the case have been reported in English language journals and media. We provide a detailed description of the case, review the main challenges of preparing and applying AEDs for persons with dementia and briefly assess the adequacy of the current oversight system governing AEDs.

Research Information for Reasonable People.

In 2017, federal officials issued a revised version of the Common Rule, the federal regulations that govern much of the human subject research conducted in the United States. Two provisions on information disclosure have reportedly provoked confusion among researchers and people responsible for research oversight. These provisions incorporate the familiar and foundational legal concept known as the reasonable person standard, applying this to research disclosure. Although other, long-standing Common Rule provisions require reasonableness judgments, the new provisions differ in that they require reasonableness to be judged from the ordinary person's perspective instead of the perspective of scientists, clinicians, and other experts generally involved in designing and reviewing human studies.

Preferences for learning different types of genome sequencing results among young breast cancer patients: Role of psychological and clinical factors.

The growing importance of genome sequencing means that patients will increasingly face decisions regarding what results they would like to learn. The present study examined psychological and clinical factors that might affect these preferences. 1,080 women diagnosed with breast cancer at age 40 or younger completed an online survey. We assessed their interest in learning various types of genome sequencing results: risk of preventable disease or unpreventable disease, cancer treatment response, uncertain meaning, risk to relatives' health, and ancestry/physical traits. Multivariable logistic regression was used to examine whether being "very" interested in each result type was associated with clinical factors: BRCA1/2 mutation status, prior genetic testing, family history of breast cancer, and psychological factors: cancer recurrence worry, genetic risk worry, future orientation, health information orientation, and genome sequencing knowledge. The proportion of respondents who were very interested in learning each type of result ranged from 16% to 77%. In all multivariable models, those who were very interested in learning a result type had significantly higher knowledge about sequencing benefits, greater genetic risks worry, and stronger health information orientation compared to those with less interest (p-values < .05). Our findings indicate that high interest in return of various types of genome sequencing results was more closely related to psychological factors. Shared decision-making approaches that increase knowledge about genome sequencing and incorporate patient preferences for health information and learning about genetic risks may help support patients' informed choices about learning different types of sequencing results.

Advance Directives and Discrimination against People with Dementia.

In the article "On Avoiding Deep Dementia," Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second position. I agree with several of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients.

A Tale of Two Disciplines: Law and Bioethics.

Fascination with In re Quinlan, the first high-profile right-to-die case in the United States, led the author to law school. By the time she received her law degree, bioethics was emerging as a field of study, and law and bioethics became her field. The mission of legal education is to teach students to "think like a lawyer," which can be a productive way to approach issues in many fields, including bioethics. Legal education can also teach individuals to respect people whose views on bioethics issues differ from their own. This essay describes three areas in which legal training influenced the author's work in bioethics: treatment decisions, research misconduct, and stem cell research.

On Legalizing Physician-Assisted Death for Dementia.

Last November, soon after Colorado became the latest state to authorize physician-assisted suicide, National Public Radio's The Diane Rehm Show devoted a segment to legalization of "physician assistance in dying," a label that refers to both physician-assisted suicide and voluntary active euthanasia. Although the segment initially focused on PAD in the context of terminal illness in general, it wasn't long before PAD's potential application to dementia patients came up. A caller said that her mother had Alzheimer's disease and was being cared for at great expense. Suspecting that she will suffer the same fate, the caller reported that she had included in her will "my specific request that if I should be diagnosed, and it is legal to do so, I would like to opt out of a life and many years of suffering." A few countries, such as the Netherlands and Belgium, already allow PAD for dementia in certain circumstances. It wouldn't be surprising to see a U.S. legalization effort in the coming years.

A Deep Dive into Community Engagement.

Community engagement offers opportunities to enhance the value of health research. Through engaging with community partners, researchers can pursue projects that produce meaningful benefits for study populations. At the same time, engagement presents challenges for everyone involved. High-quality engagement requires attending to the choice of community partners, the ethics of engagement, education for researchers and community partners, project planning, and the distinct knowledge that experienced research subjects can contribute to engagement activities.