[A] man does not consist of memory alone. He has feeling, will, sensibilities, moral being…. And it is here … that you may find ways to touch him.—A. R. Luria1.

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)

Physician-assisted suicide laws in Oregon and Washington require the person's current competency and a prognosis of terminal illness. In The Netherlands voluntariness and unbearable suffering are required for euthanasia. Many people are more concerned about the loss of autonomy and independence in years of severe dementia than about pain and suffering in their last months. To address this concern, people could write advance directives for physician-assisted death in dementia. Should such directives be implemented even though, at the time, the person (...) is no longer competent and would not be either terminally ill or suffering unbearably? We argue that in many cases they should be, and that a sliding scale which considers both autonomy and the capacity for enjoyment provides the best justification for determining when: when written by a previously well-informed and competent person, such a directive gains in authority as the later person's capacities to generate new critical interests and to enjoy life decrease. Such an extension of legalized death assistance is grounded in the same central value of voluntariness that undergirds the current more limited legalization. (shrink)

Almost all jurisdictions where physician-assisted death is legal require that the requesting individual be competent to make medical decisions at time of assistance. The requirement of contemporary competence is intended to ensure that PAD is limited to people who really want to die and have the cognitive ability to make a final choice of such enormous import. Along with terminal illness, defined as prognosis of death within six months, contemporary competence is regarded as an important safeguard against mistake and abuse, (...) arguably the strongest objections to legalizing PAD.The insistence on contemporary competence is problematic. It means that someone who has dementia is ruled out as a candidate for PAD, even if she is terminally ill and suffering terrible and unrelievable pain. It also rules out individuals with strong and unwavering desires not to end their life in dementia. (shrink)

Better public health and medicine have given us a new kind of death and with it, a new fear – the fear that death will come too late and take too long. The generation that is dying now is largely unprepared for this new kind of death, for traditionally, people have always tried to avoid or postpone death. But if we are to avoid a bad death – too slow and too late – many of us with access to 21st (...) century medicine will need to develop a very new art, the art of going to meet death. We will need the wisdom to discern when our lives are over, sometimes even without medical indicators such as a terminal or chronic illness. Then we will need the skill to wrap things up, both within ourselves and with our loved ones, and finally, the courage, decisiveness and resolution to take steps to end our lives. (shrink)

Creation Ethics illuminates an array of issues in "reprogenetics" through the lens of moral philosophy. With novel frameworks for understanding prenatal moral status and human identity, David DeGrazia tackles the ethics of abortion and embryo research, genetic enhancement and prenatal genetic interventions, procreation and parenting, and obligations to future generations.

The ancient practice of metzitzah b'peh, direct oral suction, is still practiced by ultra-Orthodox Jews as part of the religious rite of male newborn circumcision. Between 2000 and 2011, 11 children have died in New York and New Jersey, following infection by herpes simplex virus, presumably from infected practitioners. The City responded by requiring signed parental consent before oral suction, with parents being warned of the dangers of the practice. This essay argues that informed consent is not an appropriate response (...) to this problem. An outright ban would a better response to a practice that is dangerous to children, but might prove unconstitutional under New York State law. (shrink)

This issue’s “Legal Briefing” column covers recent legal developments involving voluntarily stopping eating and drinking (VSED). Over the past decade, clinicians and bioethicists have increasingly recognized VSED as a medically and ethically appropriate means to hasten death. Most recently, in September 2013, the National Hospice and Palliative Care Organization (NHPCO) called on its 2,000 member hospices to develop policies and guidelines addressing VSED. And VSED is getting more attention not only in healthcare communities, but also in the general public. For (...) example, VSED was recently highlighted on the front page of the New York Times and in other national and local media. Nevertheless, despite the growing interest in VSED, there remains little onpoint legal authority and only sparse bioethics literature analyzing its legality. This article aims to fill this gap. Specifically, we focus on new legislative, regulatory, and judicial acts that clarify the permissibility of VSED. We categorize these legal developments into the following seven categories: 1. Definition of VSED2. Uncertainty Whether Oral Nutrition and Hydration Are Medical Treatment3. Uncertainty Regarding Providers’ Obligations to Patients Who Choose VSED4. Judicial Guidance from Australia5. Judicial Guidance from the United Kingdom6. Judicial Guidance from Canada7. Case of Margot Bentley. (shrink)