Trapped: An examination of the ethics of incapacitated patient careand clinical research Público

Abstract

Trapped dramatizes and dissects ethical dilemmas involved in caring for terminally ill, incapacitated patients who cannot make decisions about their treatment, do not have advance directives, and do not have surrogate decision makers. Patients are often diagnosed by the attending medical professionals as comatose or in a persistent vegetative state with no hope of regaining consciousness. Further aggressive treatment is considered futile and withholding or withdrawing life sustaining care is recommended. Trapped depicts a patient with locked-in syndrome misdiagnosed as comatose. He is completely paralyzed and unable to communicate, but is conscious and narrates the events surrounding his care as the medical professionals in a neurological intensive care unit move toward withdrawal of life support. A technical description of locked-in syndrome and an ethical analysis of key issues raised follow the story. The first issue is the process by which decisions are made to withhold and withdraw life sustaining treatment from incapacitated patients without surrogate decision makers or advance directives. A recommendation is made to augment current standard procedure. Also analyzed are the practice of issuing do-not-resuscitate (DNR) orders for these patients and whether to enroll incapacitated patients in clinical research. Finally, specific recommendations are proposed for standardized, systematic policies for decision making.

Table of Contents

Table of Contents

Chapter

I. Awakening...................1

II. Isolation....................13

III. Anger.......................21

IV. Helplessness..............27

V. Agitation....................39

VI. Exhaustion.................50

VII. Disbelief...................53

VIII. Relief......................63

IX. Anticipation...............65

X. Uncertainty................75

XI. Perturbation..............84

XII. Acceptance.............86

XIII. Epilogue.................95

What is Locked-in Syndrome?

XIV. Appendix...............102

Ethics of Incapacitated Patient Care and Clinical Research

XV. List of References....132

About this Master's Thesis

Rights statement

• Permission granted by the author to include this thesis or dissertation in this repository. All rights reserved by the author. Please contact the author for information regarding the reproduction and use of this thesis or dissertation.

School	Laney Graduate School
Department	Bioethics
Submission	Master's Thesis
Language	English
Research Field	Philosophy Literature, General Biology, Neuroscience
Palavra-chave	clinical ethics bioethics incapacitated patients
Committee Chair / Thesis Advisor	Eisen, Arri, Emory University
Committee Members	Grimsley, Jim, Emory University Kinlaw, Kathy, Emory University

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