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.

First-in-human HIV-remission studies: reducing and justifying risk.

Interest and excitement surround the possibility of developing measures that produce sustained or permanent HIV remission in infected individuals. First-in-human (FIH) trials are one step in exploring this possibility. Initial human trials raise the usual ethical issues associated with human research, and a set of distinct issues. Because the potential direct benefits to FIH trial volunteers will be either small or non-existent, trial risks must be justified by the social value of the information the trials are expected to produce. To minimise and justify risks, researchers must have solid preclinical evidence that FIH trials will be safe and produce information relevant to human health improvements. Researchers must also adopt adequate study safeguards to protect FIH subjects. An ethically defensible study population must be selected as well.

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.

Medicare and Advance Planning: The Importance of Context.

In January 2016, a long-delayed Medicare change took effect. The Medicare program will now reimburse doctors for time they spend talking with patients about end-of-life care. This is the move that Sarah Palin and other Affordable Care Act critics said would authorize government "death panels" to decide whether older Americans should live or die. Today virtually no one buys into Palin's death panel rhetoric. But many people do think the Medicare change is a big deal. Representative Earl Blumenauer, a Democrat from Oregon who sponsored the original ACA reimbursement proposal, lauded the Medicare provision as "a turning point in end-of-life care." Others are not so sure about that. After all, laws promoting advance care planning have existed for decades. The federal Patient Self-Determination Act of 1990 and the many court decisions and state laws supporting advance care planning have had relatively little impact. Similarly, legal recognition of physician orders for life-sustaining treatment as advance planning instruments have not produced the improvements that were predicted. And from a broad perspective, advance care planning is a small piece of the puzzle. The effort to improve end-of-life care must take into account the limitations of advance decision-making, as well as the overriding importance of the general standard of care for terminally ill patients.

Personal knowledge and study participation.

Scientists in earlier times considered personal research participation an essential component of their work.Exposing themselves to untested interventions was seen as the most ethical way to gauge the human response to those interventions. The practice was also educational, for it generated useful information that helped researchers plan subsequent human studies.Self-experimentation was eventually replaced by more comprehensive ethical codes governing human research.But it is time to bring back the practice of self-experimentation, albeit in modified form. Through serving as a study subject, investigators and other research professionals can obtain valuable information about their work.

Edmund Pellegrino and the art of civilized dialectics.

I had the good fortune to work with Edmund Pellegrino from 2005 until 2009, while he was chairman and I was a member of the President's Council on Bioethics. We came from different disciplines--medicine and law--and from different generations. Until that point, our paths had rarely crossed. I am so glad that I finally did have an opportunity to get to know him. Pellegrino contributed a great deal to the council during his time as chairman. I cannot begin to cover all that he brought to the council during his four years of leadership. In this essay, I describe how his views of both public bioethics and clinical ethics shaped his council participation.

Law, ethics, and the patient preference predictor.

The Patient Preference Predictor (PPP) is intended to improve treatment decision making for incapacitated patients. The PPP would collect information about the treatment preferences of people with different demographic and other characteristics. It could be used to indicate which treatment option an individual patient would be most likely to prefer, based on data about the preferences of people who resemble the patient. The PPP could be incorporated into existing US law governing treatment for incapacitated patients, although it is unclear whether it would be classified as evidence of a specific patient's preferences or those of a reasonable person sharing certain characteristics with the patient. Ethical concerns about the quality and significance of PPP choices could influence legal decision makers' views of the PPP.

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.

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.

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 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.

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.