L. Syd M Johnson - The Ethics of Uncertainty: Entangled Ethical and Epistemic Risks in Disorders of Consciousness

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Library of Congress Cataloging-in-Publication Data

Names: Johnson, L. Syd M., author.

Title: The ethics of uncertainty : entangled ethical and epistemic risks in

disorders of consciousness / L. Syd M Johnson.

Description: New York : Oxford University Press, [2022] |

Includes bibliographical references and index. |

Identifiers: LCCN 2021031199 (print) | LCCN 2021031200 (ebook) |

ISBN 9780190943646 (hardback) | ISBN 9780190943677 (epub) | ISBN 9780190943653

Subjects: MESH: Consciousness Disorders |

Uncertainty | Risk Managementethics

Classification: LCC R724 (print) | LCC R724 (ebook) | NLM WL 341 |

DDC 174.2dc23

LC record available at https://lccn.loc.gov/2021031199

LC ebook record available at https://lccn.loc.gov/2021031200

DOI: 10.1093/med/9780190943646.001.0001

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The Poems of Emily Dickinson: Variorum Edition, edited by Ralph W. Franklin, Cambridge, Mass.: The Belknap Press of Harvard University Press, Copyright 1998 by the President and Fellows of Harvard College. Copyright 1951, 1955 by the President and Fellows of Harvard College. Copyright renewed 1979, 1983 by the President and Fellows of Harvard College. Copyright 1914, 1918, 1919, 1924, 1929, 1930, 1932, 1935, 1937, 1942 by Martha Dickinson Bianchi. Copyright 1952, 1957, 1958, 1963, 1965 by Mary L. Hampson.

For Zo and Izzy,

and for Mal, who lived and died while I wrote this.

I felt a Cleaving in my Mind

As if my Brain had split

I tried to match it Seam by Seam

But could not make them fit

The thought behind, I strove to join

Unto the thought before

But Sequence ravelled out of Sound

Like Balls upon a Floor

Emily Dickinson (1896)

This book is primarily about two things. One is disorders of consciousness (DoCs). The other is epistemic and ethical uncertainty, how they interact, and how they might be managed in a way that helps us in thinking about, and making decisions for, patients with DoCs. DoCs are an important case study for what I call the ethics of uncertainty, but they are also what inspired this, an approach to ethics that acknowledges and wrestles with uncertainty. Bioethics should be grounded in reality. It should be down to earth, where theres mud to get stuck in, where we risk getting our hands dirty. It should, if we do it right, increase tension and hold it, confront uncertainty and its implications. This is a work of applied ethics, and particularly, bioethics. I expect and hope that the ethical approach I propose in these pages will have broader applications and implications, beyond DoCs.

Part of what prompted this book, the focus on DoCs, and the embrace of the tensions (from multiple directions and dimensions) is the disorders themselves, their unique history, and their unique place at the center of a number of formative debates in academic bioethics, clinical medicine, and the public sphere. DoCs and especially the vegetative state are familiar to people who have no particular and abiding interests in medicine or bioethics. Theyve heard of the vegetative state (or more likely, the outdated but still widely used term persistent vegetative state). Theyve thought about it, and think they have pretty settled views on what they think about it, and what they would want themselves, should they ever be someone in a vegetative state. I was one of those people for a good chunk of my life. I remember vividly when I was a child and Karen Ann Quinlans legal case was front page news. I accepted the orthodox view that those in a vegetative state were hopeless cases whose lives were without meaning, purpose, or value.

A curious thing happened. In 2009, a case involving a patient named Rom Houben, in Belgium, generated international headlines. Houben had been diagnosed as being in a vegetative state, and he remained that way for two decades, but he was suddenly able to communicate using a method called facilitated communication, in which a therapist helps an individual move their hands across a board or touchscreen, allowing them to form words and sentences. Houben was said to be writing a novel. He reportedly poignantly said of his years of forced silence I screamed, but there was nothing to hear. Steven Laureys, a neurologist and researcher at Belgiums Coma Science Group, reported that Houbens metabolic brain function, as revealed by a positron emission tomography (PET) scan, was nearly normal.

It turned out to be a hoax, although perhaps not an intentional one. Facilitated communication is widely discreditedthe facilitators can, intentionally or not, exercise too much control over what the patient says by guiding their hands. Houbens facilitator later acknowledged that she had unwittingly done that. But the curious case prompted me to look again at DoCs and to appreciate for the first time the unsettling fact of their high rates of misdiagnosis. It was a time of great upheaval, even without hoaxes, when a number of unsettling and remarkable discoveries were being made about DoCs and DoC patients, including research on patients who could respond to commands by controlling their brain activity. Renewed scientific and bioethical interest in DoCs followed.