Competent patients have considerable legal authority to control life‐and‐death care. They may refuse medical life support, including medically delivered food and fluids. Even when they are not in need of any life‐saving care, they may expedite death by refusing food and water by mouth—voluntarily stopping eating and drinking, or VSED. Neither right is limited to terminal illness. In addition, in four U.S. states, competent patients, if terminally ill, may obtain lethal drugs for aid‐in‐dying.For people who have dementia and are no (...) longer competent, however, control over the end of life is much less extensive. They may have written a clear advance directive for refusing life‐saving care in specified circumstances yet subsequently find themselves living for years in severe dementia with no need for life‐saving care that could be refused. Chronic progressive dementia is not itself life threatening until its very final stage. Even in jurisdictions that permit active aid‐in‐dying, individuals with advanced dementia are not eligible; they lack the required current competence, and they are seldom deemed terminally ill. As for the right to VSED, its very name—voluntarily stopping eating and drinking—is seen as excluding noncompetent persons.One option for ensuring that one does not live years in severe dementia is to use advance directives to withhold food and water by mouth. The driving element behind VSED is that forcing people to ingest food is as objectionable an intrusion on bodily integrity, privacy, and liberty as imposing unwanted medical treatment. Thus, if incompetent people do not lose their rights to refuse life‐saving treatment, and if people when competent have just as strong a right to VSED as they do to refuse life‐saving treatment, then people do not lose their right to VSED when incompetent either. They only have to exercise it by AD. (shrink)

Patients with advanced dementia suffer from severe cognitive and functional impairment, including eating disorders. The focus of our research is on the issue of life-sustaining treatment, specifically on the social and ethical implications of tube feeding. The treatment decision, based on values of life and dignity, involves sustaining lives that many people consider not worth living. We explore the moral approach to caring for these patients and review the history of the debate on artificial nutrition and hydration showing the impact (...) of the varying perceptions of the value of these patients' lives on changing norms. We argue that in light of the value of solidarity, decisions about life-sustaining treatment for patients with advanced dementia should be made on a case by case basis, as with any other patient, in consideration of the medical implications of the intervention which might best serve the goals of care for the individual patient. (shrink)

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid (...) total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

It's not unusual to hear someone say, ‘I'd rather be dead than have Alzheimer's’. In ‘Alzheimer Disease and Preemptive Suicide’,1 Dena Davis explains why this is a reasonable position. People taking this position will welcome the discovery of biomarkers permitting very early AD diagnosis, Davis suggests, for this will enable more of them to end their lives while they remain motivated and able to do so. At the same time, Davis observes, people would have less reason to resort to the (...) drastic remedy of pre-emptive suicide if they had absolute authority over the medical treatment they received as patients with dementia; but the threat of pre-emptive suicide is not, in my view, a sufficient reason to grant competent individuals that authority.If preclinical diagnosis of AD becomes possible, some pre-emptive suicides will probably occur. There would be no ethical or practical way to ban such suicides, and it would be silly to try. Clinicians will undoubtedly try to discourage people seeking biomarker information in furtherance of a suicide plan, but savvy individuals will simply conceal their true motivation for having the tests. The real problem for people intent on self-destruction is that biomarkers are unlikely to deliver a clear suicide signal.First, as Davis notes, work on biomarkers remains in the research stage. No one yet knows whether biomarker tests will prove accurate enough to warrant clinical use. Second, even clinically accepted biomarker tests will generate imperfect information about future disease. Biomarkers may produce more accurate estimates of a person's risk of developing AD, but like all predictive tests, they will also yield false positive and negative results. The …. (shrink)

When patients have progressive and incurable dementia, should their advance directives always be followed? Contra Dworkin, Dresser argues that when patients remain able to enjoy and participate in their lives, directives to hasten death should sometimes be disregarded.

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)

The number of people suffering from dementia will rise considerably in the years to come. This will have important implications for society. People suffering from dementia have to rely on relatives and professional caregivers when their disorder progresses. Some people want to determine for themselves their moment of death, if they should become demented. They think that the decline in personality caused by severe dementia is shocking and unacceptable. In this context, some people consider euthanasia as a way to avoid (...) total deterioration. In this article, we discuss some practical and ethical dilemmas regarding euthanasia in persons with severe dementia based on an advance euthanasia directive. We are using a personalist approach in dealing with these ethical dilemmas. (shrink)

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even (...) though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician–patient–family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached. (shrink)

Challenging, with several powerful arguments, some of our deepest beliefs about rationality, morality, and personal identity, Parfit claims that we have a false view about our own nature. It is often rational to act against our own best interersts, he argues, and most of us have moral views that are self-defeating. We often act wrongly, although we know there will be no one with serious grounds for complaint, and when we consider future generations it is very hard to avoid conclusions (...) that most of us will find very disturbing. (shrink)

In Alzheimer's disease (AD), pathological processes start in the brain long before clinical dementia. Biomarkers reflecting brain alterations may therefore indicate disease at an early stage, enabling early diagnosis. This raises several ethical questions and the potential benefits of early diagnosis must be weighted against possible disadvantages. Currently, there are few strong arguments favouring early diagnosis, due to the lack of disease modifying therapy. Also, available diagnostic methods risk erroneous classifications, with potentially grave consequences. However, a possible benefit of early (...) diagnosis even without disease modifying therapy is that it may enable early decision making when patients still have full decision competence, avoiding problems of hypothetical consents. It may also help identifying patients with cognitive dysfunction secondary to other diseases that may be responsive to treatment already today. (shrink)