Early in 1970, just as we were organizing The Hastings Center, we had to decide which issues on a long menu of possibilities should receive our early attention. At the top of our list was end-of-life care. Complaints about care for the dying had mounted during the 1960s, fueled by technological progress in sustaining life, by too many patients abandoned by physicians as they lay dying, by a lack of patient choice on how their lives should end, and by woefully inadequate pain management. After a few years of study, the care of the dying seemed to admit of a solution: giving patients more choice by the use of living wills or appointment of a surrogate, improving the training of physicians to better deal with death and discussion with patients, and creating a hospice movement and greatly enhanced palliative care.

In this essay I ask the reader to consider the “end of life” as a life stage, rather than as a health state. At one end of the life course is childhood and at the other end is elderhood. The basic inter-generational social compact in most societies is that working adults take care of their children and their parents, and count on their children to do the same for them. In developed countries, these obligations are met in part through government programs, with taxpayers funding significant portions of education, health care, and income support.

Early announcements of this special journal issue solicited authors interested in contributing articles on the subject of “costs at the end of life.” Those who replied were then informed the title was being changed, on the basis of early subscriber interest (or, perhaps disinterest), in “rational end-of-life treatment.” Because that seemed a still inadequate reflection of the authorial concerns of responding potential contributors, the editors again changed the title, two months later, to “Making Treatments More Rational and Compassionate for the Chronically Critically Ill.” At that point the editors gave up and decided this issue’s final title would be determined only after the papers were submitted and reviewed.

The Institute of Medicine (IOM) reporting on the quality of health care in America recommends six aims for achieving the health care system we could have. Together with the Institute for Healthcare Improvement (IHI) Triple Aim initiative, a framework has emerged to challenge providers, educators, and policymakers to remake the health care system according to specific objectives: to provide care that is safe, effective, patient-centered, timely, efficient, and equitable to more people at a price we can afford. Complicating this mission of better prevention and better care at a lower cost is a daunting demographic: January of 2011 marked the month and year that the first of the baby boomers turned 65. The U.S. Census Bureau in May 2010 projected the number of Americans of this age and over to reach 88 million by 2050, more than double the current figure of 40.2 million. Parekh and Barton forecast in stark detail what it will be like to address these burgeoning numbers of older Americans with comorbidities, including the fact that over 20% of the population currently experiences at least two chronic medical conditions.

What does it mean to be a “just” and “caring” society in meeting the health care needs of the terminally ill when we have only limited resources to meet virtually unlimited health care needs? This is the question that will be the focus of this essay. Another way of asking our question would be the following: Relative to all the other health care needs in our society, especially the need for lifesaving or life-prolonging health care, how high a priority ought the health care needs of persons who are terminally ill have? Should any of the health care needs of the terminally ill be assigned very low priority? Or should all their health care needs be assigned the highest priority? If we reflect a bit, we will find ourselves greatly internally conflicted. On the one hand, the “caring” side of our moral self might see terminally ill individuals as being among the “medically least well off,” and therefore, deserving virtually any medical resources that will yield any degree of good for them.

In 1989, Helga Wanglie, 86 years old, broke her hip. This began a medical downhill course that a year later caused her health care providers to conclude that she would not benefit from continued medical treatment. It would be futile, and therefore, should not be provided. Her husband (the surrogate decision maker) disagreed, and the conflict eventually led to a lawsuit. The Wanglie case touched off an extended debate in the medical and bioethical literature about medical futility: what it means and how useful the concept is in making ethical decisions about starting or stopping treatment.

The cost of health care at the end of life accounts for a high proportion of total health care costs in the United States. The percentage of Medicare payments attributable to patients in their last year of life was 28.3% in 1978 and has remained substantially the same at 25.1% in 2006. This indicates how little progress has been made in containing these costs, though doing so will be important to promote a financially sustainable health care system. These expenditures also highlight the prospect that efforts to reduce health care costs overall are likely to disproportionately affect the care patients receive at the end of life.

Providing care for a baby born at 24 weeks of gestation in a neonatal intensive care unit (NICU) is one of the most expensive medical treatments in the United States today. The cost can easily run over $300,000 for one baby. Furthermore, many extremely premature babies who survive are left with chronic diseases or disabilities that require further medical expenses and other specialized services throughout childhood or throughout life. When all these expenditures are totaled up, it can seem that neonatal intensive care is just not worth it.

Concerns about the cost-effectiveness of NICUs have led to persistent critical scrutiny of these specialized units by physicians, economists, and epidemiologists. These analysts have examined NICUs and the patients in them in order to determine whether there are subpopulations of babies for whom neonatal intensive care is so demonstrably ineffective or so costly that it should not be provided. Such examinations have been carried out in many different countries, at many times over the last 30 years, and have analyzed outcomes for babies by gestational age, birthweight, and illness severity.

As is evident from the other articles in this special issue, end-of-life treatment has engendered a vigorous dialogue in the United States over the past few decades because decision making at the end of life raises broad and difficult ethical issues that touch on health professionals, patients, and their families. This concern is exacerbated by the high cost related to the end of life in the U.S. Moreover, in light of demographic patterns, progressively scarce health care resources, and an expanding array of life-saving technologies, decisions at the end of life are becoming problematic matters of public and, thus, scholarly concern in most countries. Issues at the end of life are central not only to bioethics but also raise important ancillary policy dimensions.

“The thing about life is that one day you’ll be dead.” Indeed. But even total and honest acceptance of this brute fact about our relationship to death does not diminish the value we see in short remaining life at the end of life. Few just “give in” and no more fight for life because death is seen as an inherent part of life. They still invest small amounts of additional life with huge value. How high may that value plausibly be? What is the value of a relatively short extension of life when death is inevitably near?

The hospice movement in the United States is approximately 40 years old. During these past four decades, the concept of holistic, multidisciplinary care for patients (and their families) who are suffering from a terminal illness has evolved from a modest, grassroots constellation of primarily volunteer-run and community-governed endeavors to a multimillion dollar industry where the surviving nonprofits compete with for-profit providers, often publicly traded, managed by M.B.A.-trained executives, and governed by corporate boards. The relatively recent emergence of for-profit hospice reflects an increasing commercialization of health care in the United States, the potentially adverse impact of which has been well documented.

On April 13, 2010, Nebraska enacted a new state ban on abortion in the Pain-Capable Unborn Child Protection Act that ha caught the attention of many on both sides of the abortion debate, and has inspired other states to attempt similar measures. The statute requires the referring or abortion-providing physician to make a “determination of the probable postfertilization age of the unborn child” (defined as, “the age of the unborn child as calculated from the fertilization of the human ovum”) and makes it illegal to induce or attempt to perform or induce an abortion upon a woman when the “probable postfertilization age” of the fetus is “twenty or more weeks” unless the doctor determines in “reasonable medical judgment (1) she has a condition which so complicates her medical condition as to necessitate the abortion of her pregnancy to avert her death or to avert serious risk of substantial and irreversible physical impairment of a major bodily function or (2) it is necessary to preserve the life of an unborn child.”

Offering cash payments to research subjects is a common recruiting method, but this practice continues to be controversial because of its potential to compromise the protection of human subjects. Some critics question whether researchers should be allowed to offer money at all, citing concerns about commodification of the research subject, invalidation of study results, and increased risks to subjects. Other critics are comfortable with the idea of monetary payments but question how much researchers can pay their subjects, citing concerns about undue inducement, crowding out, and monetary exploitation. Focusing only on the amount researchers can pay their subjects, this paper argues that the federal regulations and guidelines should implement a standard payment formula. It argues for a wage payment model, and critically examines three candidates for a base wage: the nonfarm production wage, the FLSA minimum wage, and a living wage.

The ethics sections of Critical Care Societies have issued position statements and proposed a variety of position papers and policies describing the appropriate use of critical care services. These policies describe the goals of critical care provision — to support a patient through an acute, potentially reversible, life-threatening illness — and provide broad guidance on physiological and hemodynamic criteria that require the specialized care of an ICU environment. In recent years, many critical care professionals have, however, reported providing care they felt was inappropriate or futile even though most felt they should not have done so. Futile care encompasses treatments that will not work or treatments that have no chance of providing any benefit. ICU teams define care as inappropriate when it fails to restore a person to an awareness of self, and an ability to interact with their environment particularly when a lot of critical care resources are required. When patients experience significant amounts of pain and suffering, such care seems even more inappropriate.

The least infringement principle has been widely endorsed by public health scholars. According to this principle, public health policies may infringe upon “general moral considerations” in order to achieve a public health goal, but if two policies provide the same public health benefit, then policymakers should choose the one that infringes least upon “general moral considerations.” General moral considerations can encompass a wide variety of goals, including fair distribution of burdens and benefits, protection of privacy and confidentiality, and respect for autonomy.

In this article, we argue that the Center for Disease Control and Prevention's (CDC) 2006 HIV screening recommendations (“Recommendations”) may violate the least infringement principle. This is a concern because, although not legally binding, the Recommendations appear to have already influenced state laws and will likely continue to do so as legislative proposals continue to be passed. At a minimum, therefore, the Recommendations have important implications for HIV screening within the United States.

In the March 2010 edition of Mayo Clinic Proceedings, Drs. Rose and Curry declared that resident physicians have an ethical duty to reduce error during periods of fatigue. Problematically, however, they argued this means ingesting a stimulant for performance enhancement and sleep avoidance (hereinafter “PESA”) during a shift when a resident physician is experiencing fatigue as the more ethical choice than forgoing ingesting a stimulant. Rather than accepting enhancement as an unstoppable technological imperative, this article will examine the underlying motivations for enhancement embedded in our culture and the corresponding legal framework relating to stimulant drugs. Although our society seems to be engaged in a pharmacological arms race of efficiency, competition, and self “betterment,” the FDA has not approved stimulant drugs such as modafinil for PESA. As a result, the off-label use of modafinil for PESA means these individuals are part of a large-scale experiment that poses serious immediate and long-term side effects to the individual user as well as society.