Catastrophic Diseases

Catastrophic Diseases: Who Decides What?

Jay Katz
Alexander Morgan Capron
Copyright Date: 1975
Published by: Russell Sage Foundation
Pages: 296
  • Cite this Item
  • Book Info
    Catastrophic Diseases
    Book Description:

    People do not choose to suffer from catastrophic illnesses, but considerable human choice is involved in the ways in which the participants in the process treat and conduct research on these diseases.

    Catastrophic Diseasesdraws a powerful and humane portrait of the patients who suffer from these illnesses as well as of the physician-investigators who treat them, and describes the major pressures, conflicts, and decisions which confront all of them. By integrating a discussion of "facts" and "values," the authors highlight the forces which affect new developments in medicine-such as kidney and heart transplants-and the controversial issues they generate.

    Katz and Capron explore these issues through the use of dual conceptual perspectives. Their study first examines and evaluates the authority which should be vested in each of the chief participants in the catastrophic disease process-the physician-investigator, the patient-subject and his relatives, the professionals, and the state. Challenging questions are raised concerning medical education, informed consent, and professional responsibility. The authors next explore how the roles and capacities of the participants vary not only according to the basic issues they face but also according to the point in decision-making at which these issues arise. The process of investigating and treating catastrophic diseases, the authors believe, can thus usefully be divided into three decision-making stages-the formulation of policy, the administration of research and therapy, and the review of the decisions and their consequences.

    In conclusion, Katz and Capron demonstrate the need for a variety of individuals and groups with diverse values to be involved in decision-making in a manner which will not unnecessarily impede the scientific investigation of these diseases.

    eISBN: 978-1-61044-656-3
    Subjects: Health Sciences, Sociology

Table of Contents

  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-xii)
  3. Preface
    (pp. xiii-xvi)
    J. K. and A. M. C.
  4. Technical Note
    (pp. xvii-xx)
  5. Introduction
    (pp. 1-4)

    People do not choose to suffer from catastrophic diseases, but considerable human choice is involved in the ways in which the participants in the process treat and conduct research on these illnesses. Throughout this report we shall therefore again and again return to one overall question: Who should have the authority to make the decisions which have such far-reaching consequences for those affected by catastrophic diseases and for society as a whole? This question gains urgency as well as importance from the fact that catastrophic disease research and treatment illustrate well a number of more general phenomena. First, decisions about...


    • [PART I: Introduction]
      (pp. 5-6)

      Too often explorations of the problems created by medical advances are undertaken with the assumption that the most clearsighted and rational decisions will be reached if the scope of the discussion is restricted to “factual” questions. At most, when the role of “values” in decisionmaking is acknowledged, it is generally treated as a separate topic and left divorced from a consideration of the facts. Since we believe that it is not possible to weigh and consider facts without value assumptions and preferences, we attempt in this introductory section to acknowledge the importance of both facts and values and to suggest...

    • CHAPTER ONE Introduction to the Issues
      (pp. 7-18)

      When one examines the far-reaching social ramifications of diseases instead of being concerned only with providing therapy for them, it becomes inevitable to view disease not only as a condition which causes pain and suffering and thus requires immediate help but also as an event which creates “issues” and “problems” and thus requires analysis. The posture of analyzing misfortune—rather than treating it—is, of course, an uncomfortable one. Yet if we wish to respond in a comprehensive and intelligent fashion to the needs of people who suffer from diseases that are so crushing as to devastate them and their...

    • CHAPTER TWO Analytical Framework
      (pp. 19-22)

      In noting the incidence of heart and kidney diseases, and in highlighting the distinctions between experimentation and therapy, as well as the inadequacy of resources, it is not our purpose to suggest that these issues exhaust the problems raised by the modern treatment of catastrophic diseases. Rather, we wish to emphasize the significance of these issues and to prepare for the next step in our inquiry: Who should have the authority to make decisions about life and death? People do not “choose” to have cardiac and renal difficulties,¹ but men and women, or institutions designed by them, will have to...

    • CHAPTER THREE The Role of Goals and Values
      (pp. 23-34)

      Cure or amelioration of one’s condition may seem of such overriding concern to a person suffering from a catastrophic disease, that he or she would “give anything” to achieve it. Yet as strong as the patient’s attachment to health and life may be, it is the rare individual who means this statement literally. Though the preservation of life holds a prominent, and perhaps momentarily dominant, place in a patient’s scheme of values, achieving this goal may be abandoned if it is clear that the price is neglect of or injury to other important values, such as the reduction of suffering,...

    • CHAPTER FOUR The Development and Current Status of the Procedures
      (pp. 35-54)

      Before turning to an examination of the roles of the participants in the catastrophic disease process, it may be helpful to have some familiarity with the history of the research and therapy of kidney and heart ailments. What follows is a brief sketch of that history with emphasis on the medical problems which have arisen and the social and legal questions they pose.

      The artificial kidney, the backbone of the modern treatment of irreversible kidney disease, had its origins in rather inhospitable circumstances. It had been recognized since the early years of this century that uremia could be controlled if...


    • [PART II: Introduction]
      (pp. 55-58)

      This part focuses separately on the major participants in the catastrophic disease process—the physician-investigator, the patient-subject, the professions, and the state. We intend to describe the major pressures, conflicts, and decisions which confront them individually and in their interactions with one another, in order to evaluate the extent and limits of their capacities to meet these pressures and conflicts and to make decisions. This approach should begin to raise questions about the authority that ought to be assigned to all participants and to suggest the need for new ways of ordering the catastrophic disease process. This in turn is...

    • CHAPTER FIVE The Authority and Capacity of Physician-Investigators
      (pp. 59-78)

      We begin our examination of catastrophic disease decisionmaking with the role and authority of physician-investigators. At one time, this choice would have been so obvious as to be beyond comment, for

      when one examines a new area of medicine … the nexus of authority seems naturally to lie with the physician-investigators who have set out on the uncharted seas. While there is today widespread recognition of the need for other hands in addition to the investigator’s upon the tiller, most commentators continue to take a “leave it to the investigator” stance.¹

      Even with increased attention to the potential for abuse...

    • CHAPTER SIX The Authority and Capacity of Patient-Subjects
      (pp. 79-116)

      In this chapter we are concerned primarily with those persons who are the “beneficiaries” of the new treatments for catastrophic diseases and who at the same time are also the “means” through which necessary testing to develop these new treatments is performed. In addition to the values and choices of these patient-subjects, attention will also be focused on their relationships to relatives and physician-investigators.

      We begin our evaluation of the capacity of patient-subjects to participate in decisionmaking about catastrophic diseases by exploring the rapidly developing doctrine of “informed consent.” We shall present an “informed consent model” of decisionmaking as a...

    • CHAPTER SEVEN The Authority and Capacity of Professional and Public Institutions
      (pp. 117-152)

      The interaction between physician-investigators and patient-subjects, on the one hand, and professional and public institutions, on the other, has always been an uneasy one, characterized less by friendly collaboration than by avoidance, suspicion, criticism, and hostility. This is due, in part, to deep-seated convictions among physician-investigators that their authority should not be circumscribed since they alone have the expertise to make decisions, are the guarantors of their patient-subjects’ best interests, and can be relied upon to make joint decisions with patient-subjects whenever this proves necessary. These convictions tend to be reinforced by a lack of appreciation of the complex issues...


    • [PART III: Introduction]
      (pp. 153-156)

      In Parts One and Two of this book we endeavored to identify the major problems confronting decisionmakers in the catastrophic disease process and to explore the capacities of the major participants to resolve these problems. Building on this examination, we will now propose a number of general and specific recommendations for the ordering of the catastrophic disease process. Though we shall continue to make reference to issues that have arisen in hemodialysis and organ transplantation, most of our recommendations are framed independently enough of these specific issues to make them relevant to other existing or newly arising issues created by...

    • CHAPTER EIGHT The Formulation of Policy
      (pp. 157-218)

      Any proposals for structuring the catastrophic disease process, especially recommendations that address themselves to the overall policies which should shape this process, immediately arouse concerns about their impact on physician-investigators’ freedom of action which is considered so essential for the pursuit of knowledge. These concerns cannot be brushed aside, and all promulgations for the ordering of the research and therapy process must be examined in terms of their effects on the advancement of science, an important societal value as was noted in Chapter Three. Nevertheless, the problems posed by the catastrophic disease process can be resolved neither by physician-investigators alone...

    • CHAPTER NINE The Administration of Major Medical Interventions
      (pp. 219-238)

      In the preceding chapter we did not attempt to discuss all the policies which require formulation. Instead we submitted some of the most important issues facing the catastrophic disease process—the definition of research and treatment, allocation of resources, selection of treatment recipients and of organ donors—to a more detailed analysis in order to demonstrate the importance of and need for careful and open formulation of the policies which are to guide medical decisionmaking. Recently NIH’s Artificial Heart Assessment Panel came to similar conclusions with respect to the problems created by the impending development of a totally implantable artificial...

    • CHAPTER TEN Review of Decisions and Consequences
      (pp. 239-250)

      In addition to an appellate procedure for disputes or disagreements over the conduct of individual research projects, as described in the foregoing chapter, adequate functioning of the catastrophic disease decisionmaking process also requires the creation of procedures for evaluating the decisions which have been reached and their consequences. The mechanisms of appeal and reconsideration discussed previously were concerned with the resolution of issues which arise at what we term the stage of “administration” in decisionmaking—that is, they involve the application of formulated policies to specific medical interventions. Means for after-the-fact review are also needed if the wisdom and efficacy...

  9. Table of Sources
    (pp. 251-264)
  10. Index
    (pp. 265-273)