Advance directives for oral feeding in dementia: a response to Shelton and Geppert.

In a recent paper in JME, Shelton and Geppert use an approach by Menzel and Chandler-Cramer to sort out ethical dilemmas about the oral feeding of patients in advanced dementia, ultimately arguing that the usefulness of advance directives about such feeding is highly limited. They misunderstand central aspects of Menzel's and Chandler-Cramer's approach, and in making their larger claim that such directives are much less useful than typically presumed, they fail to account for five important elements in writing good directives for dementia and implementing them properly: (1) Directives should be paired with appointment of trusted agents. (2) Appointed agents' authority can be greatly weakened without advance directives to guide them. (3) Directives' implementation does not require clinically precise assessment of dementia's stage. (4) Palliative support is typically required for withholding of oral feeding to be compassionate. (5) The central purpose of stopping feeding is often not the avoidance of suffering but not prolonging unwanted life.

Clinical Guidelines for Voluntarily Stopping Eating and Drinking (VSED).

As the care of patients with serious illness increasingly emphasizes clarifying goals of care, exploring quality of life, and minimizing patients' symptom burden, voluntarily stopping eating and drinking (VSED) has emerged as a topic of increasing interest for patients who face a diminishing quality of life. It is an option for those with serious illness that is legal in every state in the country, but for which there are few published comprehensive guidelines-and none specific to the American medical system-even as public awareness and the number of inquiries regarding this action increase. In addition to the ethical questions raised by the practice and support of VSED, there are also clinical, logistical, institutional, social, religious, spiritual, and administrative considerations for clinicians who are asked to respond to patients' inquiries about VSED and who discuss this option in end-of-life care. With these clinical guidelines, we seek to provide practical recommendations for clinicians who consider providing support to their patients who contemplate and/or undertake this effort to hasten death.

How Should Willingness-to-Pay Values of Quality-Adjusted Life-Years Be Updated and According to Whom?

Before updating any willingness-to-pay (WTP) per quality-adjusted life-year (QALY) threshold, a few points must be recognized. Ethical justification for using WTP thresholds and QALYs lies in incorporating the preferences of those whose treatment could be affected by resulting resource allocations. For WTP thresholds, such justification depends on the sufficiency of a match between a group-members of an insurance pool from which health care payments and services are drawn-and those whose health care is potentially affected. For QALYs, that justification depends on eliciting the right persons' preferences to inform quality-adjustment ratings; on balance it should be from those who have the conditions being rated. Because the value of simply being alive is not adequately accounted for, how life extension and quality improvement are combined in constructing the QALY is its most significant shortcoming as a measure. Although updating WTP thresholds might be better than not updating them, this manuscript suggests why drawing on a less fundamentally flawed concept than the conventional QALY is more important.

Advance Directives for Refusing Life-Sustaining Treatment in Dementia.

Aid-in-dying laws in the United States have two important restrictions. First, only patients who are terminally ill, defined as having a prognosis of six months or less to live, qualify. Second, at the time the patients take the lethal medication, they must be competent to make medical decisions. This means that an advance directive requesting aid in dying for a later time when the patient lacks decision-making capacity would be invalid. However, many people are more concerned about avoiding living into severe dementia for years-a time when they will lack decision-making capacity-than they are about preventing suffering or the loss of dignity or autonomy for a few months at the end of life. Gillian Bennett is an example of someone determined not to live into severe dementia. She opted for preemptive suicide in 2014, explaining why in a letter she posted online: "Every day I lose bits of myself, and it's obvious that I am heading toward the state that all dementia patients eventually get to: not knowing who I am and requiring full-time care." A major problem with Bennett's solution, however, is that the individual is likely thereby to be giving up some "good time." A legal alternative to preemptive suicide is to create an advance directive stating the circumstances under which one wants not to receive any lifesaving or life-sustaining treatment, even the most basic and noninvasive. This option is our focus in this paper: how to create effective advance directives to avoid living into severe dementia. To be relevant to progressive dementia, the directive would need to state what kinds of care should be withheld and when. At the same time, advance directives for severe dementia face serious challenges. Before addressing these, we review the normative force of directives themselves.

Merits, Demands, and Challenges of VSED.

VSED demands willful determination from those who do it. The requisite willfulness is an ethical strength, providing greater assurance of voluntariness. Dying by VSED has another major merit: its pace provides time for the person and loved ones to embrace death in a shared appreciation of life. Support from professional caregivers is important in making dying by VSED comfortable. If acknowledged by its providers, this need for professional support has ancillary benefits: accurate information is more likely to be communicated to patients, and professional caregivers help normalize VSED and minimize abuses. VSED faces a moral challenge when it is categorized as suicide. In an obvious sense, VSED is suicide: the person's intention is to die, and the means employed assuredly causes death. Being a form of suicide does not imply that VSED is morally impermissible. Pursued to hasten death in a last stage of life, it is a response to "terminal" situations. This contributes greatly to VSED's moral acceptability when perceived as suicide.

Advance directives, dementia, and withholding food and water by mouth.

People with dementia who are no longer competent have limited control over how their lives end. But an advance directive to withhold food and water by mouth could be used to ensure that one does not live for years in severe dementia. Such directives are arguably already legal.

Advance directives, dementia, and physician-assisted death.

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.

Justice and fairness: a critical element in U.S. health system reform.

The case for U.S. health system reform aimed at achieving wider insurance coverage in the population and disciplining the growth of costs is fundamentally a moral case, grounded in two principles: (1) a principle of social justice, the Just Sharing of the costs of illness, and (2) a related principle of fairness, the Prevention of Free-Riding. These principles generate an argument for universal access to basic care when applied to two existing facts: the phenomenon of "market failure" in health insurance and, in the U.S., the existing legal guarantee of access to emergency care. The principles are widely shared in U.S. moral culture by conservatives and liberals alike. Similarly, across the political spectrum, the fact of market failure is not contested (though it is sometimes ignored), and the guarantee of access to emergency care is rarely challenged. The conclusion generated by the principles is not only that insurance for a basic minimum of care should be mandatory but that the scope of that care should be lean, efficient, and constrained in its cost.

The cultural moral right to a basic minimum of accessible health care.

(1) The conception of a cultural moral right is useful in capturing the social-moral realities that underlie debate about universal health care. In asserting such rights, individuals make claims above and beyond their legal rights, but those claims are based on the society's existing commitments and moral culture. In the United States such a right to accessible basic health care is generated by various empirical social facts, primarily the conjunction of the legal requirement of access to emergency care with widely held principles about unfair free riding and just sharing of costs between well and ill. The right can get expressed in social policy through either single-payer or mandated insurance. (2) The same elements that generate this right provide modest assistance in determining its content, the structure and scope of a basic minimum of care. They justify limits on patient cost sharing, require comparative effectiveness, and make cost considerations relevant. They shed light on the status of expensive, marginally life extending, last-chance therapies, as well as life support for PVS patients. They are of less assistance in settling contentious debates about screening for breast and prostate cancer and treatments for infertility and erectile dysfunction, but even there they establish a useful framework for discussion. Scarcity of resources need not be a leading conceptual consideration in discerning a basic minimum. More important are the societal elements that generate the cultural moral right to a basic minimum.

The value of life at the end of life: a critical assessment of hope and other factors.

Low opportunity cost, weak influence of quality of life in the face of death, the social value of life extension to others, shifting psychological reference points, and hope have been proposed as factors to explain why people apparently perceive marginal life extension at the end of life to have disproportionately greater value than its length. Such value may help to explain why medical spending to extend life at the end of life is as high as it is, and the various factors behind this value might provide normative rationale for that spending. Upon critical analysis, however, most of these factors turn out to be questionable or incompletely conceived; this includes hope, which is examined here in special detail. These factors help to explain complexity and nuance in the normative issues, but they do not provide adequate justification for spending as high as it often is. In any case, two additional factors must be added to the descriptive explanation of high spending, and they throw its normative justification into further doubt: the "insurance effect" and provider-created demand. Overall, the perception of especially high value of life at the end of life provides some normative justification for high spending, but seldom strong justification, and not for spending as high as it often is.