Showing papers by "Arthur L. Caplan published in 1988"

Ethical Challenges of Chronic Illness

Abstract: Ethical Challenges of Chronic Illness A Hastings Center Report Special Supplement February/March 1988 This Special Supplement was derived from The Hastings Center project on Ethics and Chronic Illness, which was supported by a grant from the Henry Luce Foundation. The Special Supplement was edited by Courtney S. Campbell. Contents copyright 1988 by The Hastings Center. All rights reserved. There is a specter haunting the American health care system. It is the prospect of widespread chronic illness and disability in an aging society. With it comes a daunting challenge to our health care delivery system, social welfare services, families, and communities. And it presents an equally difficult challenge to millions of us as individuals. For prolonged, slowly debilitating chronic illnesses will most likely be our companions in the twilight of our lives. At present, it is unclear whether the American health care and social service systems are prepared to cope with the challenges, both financial and ethcial, that chronic illness poses to our society. Innovative policy ideas are needed, as are continuing research, extended and better coordinated social service programs, and educational programs that will equip health care providers to meet the special needs of persons with chronic illnesses. The ethical dimensions of chronic illness and chronic care have been relatively neglected topics in the overall field of bioethics. Chronic care is a tedious, grinding labor of Sisyphus. It lacks the visibility and fascination of the high tech dramas played out in acute care settings. But the practical ethical dilemmas raised by chronic care are no less important than those in acute care, and the special characteristics of chronic illness make it an ideal domain in which to explore some new ethical and philosophical approaches. Chronic illness is not only a social issue that must be addressed, it is also a poignant and perplexing facet of the human condition where fresh insight can be sought. Meeting the needs of those with chronic illness, and treating them with justice and dignity as full-fledged members of the moral community, will tax our common energies, the public purse, and our moral imagination. In 1984 The Hastings Center began a three-year project on Ethics and Chronic Illness with support from the Henry Luce Foundation. The project was premised on the hypothesis that the special nature of chronic care and the distinctive experience of chronic illness may lead to a transformation in many pervasive assumptions about the ethics and goals of medicine. The individualistic perspective behind much of the moral discourse of bioethics and social policy does not fare well in application to chronic illness and chronic care. Concepts such as patients' rights, autonomy, and best interests need to be revised in this context. In its confrontation with chronic illness, medicine's own understanding of its goals and mission must also be redefined. Intensive, high technology treatment oriented toward cure and full restoration of function, which has provided the dominant orientation for much of medicine in recent years, is usually inappropriate to the needs and problems of the chronically ill. A medical care system that lacks a sense of purpose beyond these goals will find itself increasingly uncertain and inept in the face of the demands placed upon it by chronic care. The report offered here grows out of the overall work of the Ethics and Chronic Illness Project. Chronic illness is an exceedingly broad subject, and it has been more difficult than we imagined to capture a glimpse of the rich new agenda for bioethics that chronic illness provides. We hope nonetheless to have outlined some of that agenda in a way that will stimulate others to refine and pursue it further. We are most grateful for the expert advice, guidance, and support we received from the members of the project research group, and others who took part in several meetings held during the past three years. …

Professional arrogance and public misunderstanding.

Abstract: Professional Arrogance and Public Misunderstanding Any assessment of the impact of required request legislation on organ and tissue procurement must begin by defining required request laws. Of the forty-one states that have passed such laws during the past three years, approximately half have enacted strong required request policies. These states have mandated that hospital administrators be responsible for insuring that next-of-kin or legal guardians are asked about their willingness to donate organs and tissues of the deceased when a death has been pronounced in a hospital setting. Most strong required request laws, such as those enacted by Oregon, New York, Massachusetts, and New Jersey, allow a person other than a physician to be designated to make requests. These laws also call for documentation that a request was made and require health departments to facilitate implementation of the legislation by assisting hospitals in educating their staffs and by monitoring the impact of required request legislation on the overall availability of organs and tissues for transplantation. In only one state, Kentucky, is there explicit mention of a penalty for failure to comply with required request legislation. The federal government and roughly twenty states have enacted laws that differ in important respects from strong required request legislation. Federal law as well as the laws in states such as California and Tennessee mandate that hospitals create protocols through which next-of-kin or legal guardians will be notified about the possibility of donating organs or tissues. These "weak" required request laws leave the details of requests and monitoring to individual hospitals. Perhaps the most significant difference, however, is that the federal law, which became effective in November 1987, links the creation of a donor protocol to continued eligibility for receiving monies from the Medicare program. Because of these substantial variations, assessing the impact of required request legislation is complicated. Moreover, many state laws have been in effect for as little as a year or less. The federal law is simply too new to permit any reliable estimate of its impact on either hospital practices regarding organ and tissue procurement or on the overall availability of organs and tissues for transplantation. The fact that required request laws have not been enacted in a social policy vacuum makes this task all the more complex. Many states have enacted laws mandating that occupants of automobiles and other vehicles wear seatbelts. Others have raised the legal age for purchasing alcohol and/or stiffened penalties for drunk driving. Still others have lowered the legal maximum speed for vehicular traffic. Since automobile and motorcycle accidents account for a large proportion of those persons whose kidneys, hearts, and other vital organs could be used for transplantation, changes in these laws have a direct impact on the number of persons who die each year who might serve as organ or tissue donors. For example, traffic accident fatalities in Minnesota have declined 10 percent in 1987 from the numbers recorded in 1986. Seat belt laws in Great Britain are believed to have brough about a 15 percent decrease in fatalities from accidents. Yet no reliable data exist on the actual number of persons who could have donated an organ or a kidney. For all these reasons, it is hard to know exactly how to respond to anecdotal reports concerning the impact of required request on the overall supply of organs and tissues. My associates and I at the Center for Biomedical Ethics at the University of Minnesota are currently conducting a telephone survey of ten states in which required request laws of one kind or another have been in effect for more than six months. We have contacted organ procurement agencies, health department officials, and representatives of regional eyebanks to obtain whatever information they can offer concerning the impact of the new laws. …

Toward justice in health care.

Abstract: The American health care system is in crisis. It absorbs enormous economic and human resources and yet it fails all too often to meet the needs of millions of people. The challenge facing American health care today is to fashion a system that is at once just and affordable, a system in which both greater equity and greater efficiency prevail. The annual rate of "medical inflation" has for many years exceeded the general rise in prices. I The proportion of the Gross National Product devoted to health care is more than twice the comparable figure in 1950. The Medicare Trust Fund has come close to bankruptcy.2 Despite the extraordinary increase in health expenditures over the past three decades, and the rise in government financing through Medicare and Medicaid, significant and growing inequities continue to plague the health care system. Millions of Americans either have no health insurance at all or are inadequately protected by limited and intermittent coverage.3 Millions still live in geographical regions that have been officially designated as "medically underserved."4 This state of affairs should be viewed as intolerable. Instead, it is scarcely visible as a public issue. With growing alarm about the rise in health care costs, public attention has shifted from the social goal of securing equitable access for the unprotected to the issue of "cost containment." The reformist impulse of the 1960s which sought to create an equitable health care system has exhausted itself. In 1983, when the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research issued an important report, Securing Access to Health Care,5 its call for government to assume ultimate responsibility for ensuring equitable distribution of health care received only limited attention. An even more restrained response greeted the report of the National Citizens Board of Inquiry into Health in America, Health Care USA: 1984.6 In the face of such silence it is necessary to reassert the moral priority of equity. All Americans, rich, middle class, and poor alike, should be entitled to a decent level of health care. As a nation, it is our collective responsibility to provide all individuals with a level of care necessary to maintain and restore health, and to eliminate undue anxiety about and risk of future illness. Good health cannot be assured to everyone. But good health care can and should be guaranteed. Whether the demand for the reform of the health care system is framed in terms of a "right to health care" or a "societal obligation"7 to guarantee access to health care is less important than

Is There an Obligation to Participate in Biomedical Research

Abstract: While there is no dearth of writing about ethical issues regarding human experimentation in the literature of bioethics, surprisingly little has been written, particularly in recent years, about the question of whether or not any type of obligation might exist to participate in medical research. Most contemporary discussions focus on the adequacies and inadequacies of informed consent in combination with institutional peer review boards in protecting the welfare of subjects against abuse by researchers. Or, to put the point more accurately, the discussion of the ethics of research involving human beings currently consists of adversarial haggling about the details of specific legal and regulatory provisions concerning exactly what research must be reviewed, who is competent to consent, who ought to do the reviewing of experimental protocols, and exactly what degree of detail makes for a truly informed consent [20].

Human experimentation and medical technology

Abstract: The various forms of protection devised by society for human subjects are examined. These are government regulation, informed consent, review at the local institutional level, and legal protection (malpractice suits). The related issue of how to define research is discussed. >

The new technologies in reproduction: new ethical problems.

Abstract: The assignment I have is to discuss the ethical problems raised by the development and dissemination of new technologies for assisting reproduction. The only way I can even come close to carrying off this task is to somewhat arbitrarily narrow the scope of my paper concerning the broad spectrum of techniques that have evolved to assist those who find themselves to be infertile. My comments will be directed solely to in vitro fertilization (IVF). Indeed, nearly all of my examples will be drawn from what I have elsewhere termeflstandard” IVF’ and what others have called “simple” IVF.’ Standard IVF refers to those situations in which the woman who contributes the egg to be fertilized in vitro is also the woman who will bear any conceptus that may result and who fully expects to act as the social parent to any child who is born. In standard IVF, the man who contributes the sperm to be used in fertilization is either married to or has maintained a long-standing, stable relationship with this same woman. He too fully expects to assume parental responsibilities toward any child who may be born as a result of the use of the technique. There are obvious and indeed notorious variations from standard IVF which raise a host of important ethical problems including the acceptability of using either paid or voluntary surrogates, the selection of sperm donors and gestational mothers for eugenic purposes as is done at the so-called “Nobel Prize” sperm bank in California, and the utilization of IVF techniques by homosexuals or single parents. These nonstandard forms of IVF raise so many fascinating issues, however, that there is a danger of losing sight both of the legacy of earlier debates about IVF upon contemporary ethical discussions and of the continuing need to come to terms with the ethical issues raised by even the most mundane form of IVF.

The Bioethics of Chronic Illness

Abstract: There is a specter haunting the American health care system. It is the prospect of widespread chronic illness and disability in an aging society. With it comes a daunting challenge to our health care delivery system, social welfare services, families, and communities. And it presents an equally difficult challenge to millions of us as individuals. For prolonged, slowly debilitating chronic illnesses will most likely be our companions in the twilight of our lives. At present, it is unclear whether the American health care and social service systems are prepared to cope with the challenges, both financial and ethical, that chronic illness poses to our society. Innovative policy ideas are needed, as are continuing research, extended and better coordinated social senvice programs, and educational programs that will equip health care providers to meet the special needs of persons with chronic illnesses.