Paul T Menzel

In a previous paper, it was argued that Societal Value measurement through person trade-off (PTO) elicitation offers a way to include the values of both general public and patients into cost-effectiveness analysis (CEA). It was said that patients' values could be used to estimate the effect that various health care dimensions have on health-related utility and that public values could be used to estimate the Societal Value of these changes in utility. However, this previous proposal still creates opportunities for the public to misvalue the benefit of health care interventions because of bias or misunderstanding about what the health-related utility really is of various illnesses or disabilities. A procedure that combines patient and public values into CEA to partially correct for this bias is suggested in this paper. In addition, it is pointed out that, although Societal Value measurement offers a role for distinctly public preferences in CEA, it still does not answer the question of whose utilities ought to be included in CEA.

Refusal of lifesaving treatment, and such refusal by advance directive, are widely recognized as ethically and legally permissible. Voluntarily stopping eating and drinking (VSED) is not. Ethically and legally, how does VSED compare with these two more established ways for patients to control the end of life? Is it more questionable because with VSED the patient intends to cause her death, or because those who assist it with palliative care could be assisting a suicide?In fact the ethical and legal basis for VSED is virtually as strong as for refusing lifesaving treatment and less problematic than the basis for refusing treatment by advance directive. VSED should take its proper place among the accepted, permissible ways by which people can control the time and manner of death.

In this accurately titled book, Troyen Brennan argues that the traditional medical ethic which emphasizes the beneficent physician's loyalty to the welfare of the individual patient must be constrained by larger societal considerations contained in "the public morality of liberalism". The liberalism that Brennan refers to is not just some particular political version of the 1990s or the United States, but the broad philosophical tradition that adds explicit consideration of equality to classic liberalism's emphasis on negative freedom, individual rights, and market economies. First, the new medical ethic should disavow all paternalism and respect the autonomy of patients. Second, it should incorporate society's economic and institutional concerns. Third, it should retain altruism, a virtue that requires more of physicians in individual patient relations than mere contractual fidelity. For example, commitment to all patients, not just those of the specific physician. In such altruism, duties of political involvement, especially for achieving universal access to medical care, are a professional responsibility and not merely a personal one.

Emily Walsh argues, correctly, that preference changes in progressive dementia attributable to “transformative experiences” can diminish the moral weight of advance directives (ADs). She also contends that an influential positive philosophical view about directives (to her, “the dominant view”) fails to account for transformative experiences, and that this failure explains why the view is at odds with clinicians’ typical and justified skepticism about ADs. Her analysis ends on a constructive note, suggesting important improvements to be made in ADs. Despite these notable strengths, Walsh’s analysis overplays the potential of transformative experience in dementia to constitute a relevant change of mind about a previous AD, misses a crucial element behind ADs’ moral weight, seems not to grasp what many people who write ADs about dementia are focusing on, and fails to examine carefully the subjective value of survival in precisely the dementia situations that many ADs address. After explaining these weaknesses, I, like Walsh, end on a positive note, refining one of Walsh’s important suggested improvements.

The case of Mrs A is a provocative example of euthanasia by advance directive to avoid increasingly severe dementia. It is also a ‘perfect storm’ of a disturbing case, revealing both the challenges that can arise with advance euthanasia directives (AEDs) generally and particular issues in the Dutch procedures. Kim, Miller and Dresser have done a distinct service to bioethics in detailing the case, in explaining the basis of the regional euthanasia review committee (RTE) reprimand of the administering geriatrician and in highlighting some significant deficiencies in Dutch procedures.1 Many readers, after encountering the case, may find themselves sceptical that AEDs can be an ethically viable vehicle for avoiding living into severe dementia. I will argue that caution and care, not resistance to AEDs for dementia, is in order. Real dilemmas of implementation are inherent in advance directives, to be sure, dilemmas that can be aggravated by a patient’s dementia. Yet much can be done in writing an AED to make its implementation in dementia less problematic, and the Dutch emphasis on intolerable suffering as a necessary condition for euthanasia is not the appropriate legal framework. The difficulties in the case begin with the directive itself. Any advance directive, whether for refusing lifesaving treatment or for physician-assisted death, needs to be clear about what is and is not to happen and when . At first Mrs A’s directive seems to provide a trigger point: ‘I want to make use of the legal right to … euthanasia when I am still at all mentally competent and am no longer able to live at home with my husband. I absolutely do not want to be placed in an institution for elderly dementia patients’. In a revision added a year before her death, the time had become ‘whenever I think the time …

What balance of government and private institution activity might stand a reasonable chance of achieving universal access to basic health care in the United States? David DeGrazia makes a strong case that single-payer national health insurance with managed competition in delivery is morally the preferred structure for universal access: it best achieves the combination of universal access, cost control, freedom of patient choice, and quality of care. If we account for the realities of American political and moral culture, however, is this the model for reform that people seriously committed to actually achieving universal access should be pushing? An example of the approach DeGrazia favors is Medicare. A single governmental entity pays for the care to which all persons within the program's scope are assured access, but the care is delivered by competing private providers, for-profit ones included. The international health care landscape, and even the United States itself, provides other models of the public-private mix. In Switzerland and the Netherlands, not only the providing organizations but also the "health plans"--the insurers--are competing, privately owned entities. (1) The government, to be sure, sets the framework for the competition: it controls the cost and content of the basic benefits package, enforces the mandate that everyone have insurance, and funnels significant resources to help people obtain it. In the United States, this model is represented by the Federal Employees Health Benefits plan (FEHB). The government organizes and manages the structure within which insurance plans compete and largely finances that insurance, but competing private companies offer the insurance. Can such a variant fit within the model that "single-payer" proponents like DeGrazia defend? It is not clear. DeGrazia opens the door to mixes of public and private insurers within his framework, noting that a sizable but not dominant role will be left for private insurance: insurance for whole categories of services not included in the publicly provided coverage, as well as insurance for services that fall within a public coverage category but outside the scope of services covered within the category. He also acknowledges a more debatable possible role: private insurance that duplicates the public plan's coverage. Terminologically, one might claim that "single-payer" still applies to a system that harbors private insurance of all these sorts, for a single insurer or payer is still used to assure universal access to basic care. The model of the Dutch and Swiss systems and our FEHB uses even more private insurance, yet it might also seem to qualify for the single-payer label because the government is still the single, dominant payer for the insurance. That would introduce a different sense of "payer" than proponents of single-payer national health insurance (SPNHI) have in mind: instead of paying providers to deliver the care, it would finance the insurance. This second single-payer model would seem to lose a good bit of what makes the SPNHI model morally attractive: the huge efficiency of a single insurance plan that, among other things, avoids private insurers' high spending on promotion and advertising. It is this efficiency, in turn, that allows the system to control costs, support enough services to allow patients real freedom of choice, and ultimately deliver on quality of care and patient satisfaction. Nonetheless, any astute observer can see why the Dutch-Swiss-FEHB model is enticing within the U.S. political and moral landscape. First and foremost, people get to choose their insurer, thereby preserving their perceived independence. Second, private insurance companies stay in business (and in the primary business of covering basic care). Third, a significant portion of SPNHI's efficiency advantage is retained. As long as insurance companies are all offering, at a minimum, a basic package of benefits stipulated as common to all qualified plans, insurers will be competing within a much more defined arena. …

In the relevant circumstance of both relatively high burden or cost to others and low prospective gain for themselves, people have a prima facie duty to die sooner rather than later. This duty is a personal moral duty, not a “societal” duty, and thus, it in no way implies that others may demand that it be exercised. It is literally a duty to let death come, not a more general duty to die that encompasses active measures to ensure death. A person can owe this duty not only to close family and loved ones when they are heavily burdened, but in the right circumstances also to more distant persons, even to “society”; the fundamental reason is fairness to others in the society or insurance pool, given one’s own evaluative preferences about trade-offs involving expensive, low-chance-of-benefit care. This personal moral duty to die does not extend to incompetent patients, at least not in any literal sense. The duty to die also does not jeopardize the marital vow, “for better or worse, in sickness and in health”; the creative and mutual relationship envisioned in a marital promise does not bar people from ever coming to think that they may be obligated to accept death because of effects on a spouse. Finally, although this duty is rooted in sensitivity to considerations of quality of life, it need not threaten the “special” value of individual life and lifesaving.

What is it worth to save people for this or that many years of life? Sometimes we pose that question by asking more crudely what a life is worth, perhaps even what a particular elderly person’s life is worth. In any case, of course, we need to know what it really costs to save a life. Then, with some idea of both costs and worth in hand, we proceed to decide whether we should spend what it costs.

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.

Most economists and some philosophers distinguish individual utilities from interpersonal social values. Even if challenges to that conceptual distinction can be met, further philosophically interesting questions arise. I pursue three in this paper, using, as context for the discussion, health economics and its attempt to discern empirically a social welfare function to help guide rationing decisions. (1) To discern these utilities and values in a manner that is morally appropriate if they are to influence rationing decisions, who should be queried? To discern individual health state utilities, persons in precisely those states should be asked (generically, patients), but for social values, representatives of the general public should be. (2) To discern social values, what should representatives of the public be asked? They should be asked person trade-off (PTO) questions that encompass their own self-interest, not PTO questions that focus only on others. (3) What must public repres...

The work CEA can do is indeed remarkable. It can take programs with qualitatively very different outcomes--life-saving dialysis and quality-enhancing hip replacements, for example--and inform us of their costs in relation to their comparable effects--their QALYs. This ability to ...

For decades, cost-effectiveness analysis in health care (CEA) has been criticized for unfair discrimination against the disabled and chronically ill. 1 This allegation about CEA is arguably, in the U.S., one of the driving forces behind political rejection of using CEA to prioritize health services. In conventional CEA, life extension is measured in life-years, and for good reasons within CEA's conceptual structure, life-years in disability or chronic illness are discerned to have less value than life-years in full health. In constructive response, and acknowledging that the equal value of life (EVL)must in some important sense be sustained, a number of economists and philosophers have defended CEA by distinguishing the different roles played in it by individual utility (IU) and social value (SV). 2 The result has been to carve out another kind of CEA, cost-value analysis (CVA), separable from conventional CEA that amounts to cost-utility analysis. 3 Life-years can readily be of equal value in CVA, where the claim is about social value, though they are not of equal value in conventional CEA, with its focus on utility. By modifying CEA to accommodate social value, defenders argue that CEA can be rescued from the charge of denying EVL.

Dementia poses unique limitations on control over how long one lives. It is a trap: one may want one's life to end because of dementia, but then because one is demented one cannot and may not end one's life (D. Davis, 2013). Ordinary advance directives for refusing life-sustaining treatment do not provide much protection; people may live for years into progressive dementia without needing any of the treatment that they have refused. There is a way out: withholding food and water by mouth according to clear advance directive. It is a comfortable and arguably already legal path to escaping dementia's decisional trap. To be sure, a major moral challenge, the then-self/now-self problem, confronts the implementation of such directives: the current demented self may not have the desires expressed by the previous competent self. This challenge is satisfactorily met, however, when the current experiential value of survival to demented persons has diminished to a level where it is outweighed by the interests rooted in the evaluations about their whole lives that people have expressed in their directives. In other situations the challenge is not met, in which case directives to expedite death by withholding food and water by mouth should not yet be implemented. Such selective withholding of food and water by mouth through advance directive is morally supported not only by a solution to the then-self/now-self problem but by various facts about advanced dementia. It is a kind of terminal illness, though without the six-month prognosis. Moreover, it is almost always accompanied by considerable difficulties with eating and drinking. Within an ethic of good care it is realistic to expect nursing homes to respect such directives as long as they are carefully written and cautiously implemented.