Paper $30.00 ISBN: 9780226615745 Published June 2019
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Speaking for the Dying

Life-and-Death Decisions in Intensive Care

Susan P. Shapiro

Speaking for the Dying

Susan P. Shapiro

368 pages | 15 line drawings, 13 tables | 6 x 9 | © 2019
Paper $30.00 ISBN: 9780226615745 Published June 2019
Cloth $90.00 ISBN: 9780226615608 Published June 2019
E-book $10.00 to $30.00 About E-books ISBN: 9780226615882 Published June 2019
Seven in ten Americans over the age of age of sixty who require medical decisions in the final days of their life lack the capacity to make them. For many of us, our biggest, life-and-death decisions—literally—will therefore be made by someone else. They will decide whether we live or die; between long life and quality of life; whether we receive heroic interventions in our final hours; and whether we die in a hospital or at home. They will determine whether our wishes are honored and choose between fidelity to our interests and what is best for themselves or others. Yet despite their critical role, we know remarkably little about how our loved ones decide for us.
Speaking for the Dying
tells their story, drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital. From bedsides, hallways, and conference rooms, you will hear, in their own words, how physicians really talk to families and how they respond. You will see how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects. And they expose the limited role of advance directives in structuring the process decision makers follow or the outcomes that result.
Research has consistently found that choosing life or death for another is one of the most difficult decisions anyone can face, sometimes haunting families for decades. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers could undertake before it is too late.
One / Holding Life and Death in Their Hands
Is This for Me?
Two / The Intensive Care Unit
Three / Actors
Friends, Family, and Significant Others
Health Care Professionals
Four / Decisions
Informed Consent
Five / Prognosis
Mixed Messages
Prognostic Framing
Six / Decision-Making Scripts
The Legal Script
Cognitive Scripts
Conflicts of Interest
Law at the Bedside
Seven / Improvisation: Decisions in the Real World
The Patient Should Decide
Reprising Patient Instructions
Standing in the Patient’s Shoes
It’s God’s Decision
What We Want
Denial, Opting Out
Eight / Making a Difference?
The Role of Physicians
Opting for a Trajectory
I Thought the Law Would Take Care of This
Does Any of This Matter?
Nine / The End
Before It’s Too Late
When It’s Too Late
When “This” Happens to Me

Appendix A: The Research
Appendix B.1: Patient Occupation
Appendix B.2: Patient Age, Gender, and Marital Status
Appendix B.3: Location and Purpose of Observed Meetings
Appendix C: Relationship between Multiple Trajectories Traversed
Appendix D: Decision Trajectory by Patient and Surrogate Characteristics
Appendix E: Advance-Directive Status and Aspects of the Decision-Making Process, Outcome, and Impact

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