Book contents
- Frontmatter
- Dedication
- Epigraph
- Contents
- Miscellaneous Frontmatter
- Acknowledgments
- Introduction
- 1 Decisions
- 2 The Injury
- 3 Coming to Terms with Brain Injury
- 4 The Origins of the Vegetative State
- 5 A Shift since Quinlan
- 6 Maggie's Wishes
- 7 Something Happened in Arkansas
- 8 From PVS to MCS
- 9 Leaving the Hospital
- 10 Heather's Story
- 11 Neuroimaging and Neuroscience in the Public Mind
- 12 Contractures and Contradictions: Medical Necessity and the Injured Brain
- 13 Minds, Monuments, and Moments
- 14 Heads and Hearts, Toil and Tears
- 15 What Do Families Want?
- 16 Deep Brain Stimulation in MCS
- 17 Mending Our Brains, Minding Our Ethics
- 18 It's Still Freedom
- 19 Maggie Is in Town
- 20 When Consciousness Becomes Prosthetic
- 21 The Rights of Mind
- 22 A Call for Advocacy
- Epilogue
- Notes
- In Memoriam
- Index
14 - Heads and Hearts, Toil and Tears
Published online by Cambridge University Press: 05 September 2015
- Frontmatter
- Dedication
- Epigraph
- Contents
- Miscellaneous Frontmatter
- Acknowledgments
- Introduction
- 1 Decisions
- 2 The Injury
- 3 Coming to Terms with Brain Injury
- 4 The Origins of the Vegetative State
- 5 A Shift since Quinlan
- 6 Maggie's Wishes
- 7 Something Happened in Arkansas
- 8 From PVS to MCS
- 9 Leaving the Hospital
- 10 Heather's Story
- 11 Neuroimaging and Neuroscience in the Public Mind
- 12 Contractures and Contradictions: Medical Necessity and the Injured Brain
- 13 Minds, Monuments, and Moments
- 14 Heads and Hearts, Toil and Tears
- 15 What Do Families Want?
- 16 Deep Brain Stimulation in MCS
- 17 Mending Our Brains, Minding Our Ethics
- 18 It's Still Freedom
- 19 Maggie Is in Town
- 20 When Consciousness Becomes Prosthetic
- 21 The Rights of Mind
- 22 A Call for Advocacy
- Epilogue
- Notes
- In Memoriam
- Index
Summary
Where's Maggie?
Maggie did not get better in time, and like so many others was dispatched to a skilled nursing facility. For her mother, Nancy, it was as much a strategic decision to accept the transfer as a practical one. She was still new to brain injury and being her daughter's advocate. She did not know she could have appealed the denial for more time on the grounds of equity, “… there were lots of people that were there longer and I could have fought for insurance.” But she did not pursue an appeal because she was frustrated by the quality of communication with families, or more specifically profoundly upset by one event. In the context of the Worthen's narrative what upset her seems almost trivial. But in the psyche of Nancy as a mother, it loomed large.
When Maggie was found to be colonized with Methicillin-resistant Staphylococcus Aureus (MRSA), a virulent bacteria that is resistant to most antibiotics, she needed to be isolated from other patients until cleared of the infection. Consequently, Maggie was moved out of her room to another floor where she could have a private room. This is common medical practice.
The only problem was that Nancy did not know about the transfer. When she called up to Maggie's old floor to check in, she was gone and the staff on the next shift did not know where she had been sent. For a brief time, Nancy lost track of her daughter.
It was a little thing in the scope of all that had happened and Maggie was soon found. But this degree of insensitivity was especially upsetting to Nancy. Her daughter had been moved as if her connection to her family did not matter, either to Maggie or to Nancy. But it did.
She had been transported without advance warning: “they didn't tell me so I'd come in and one time I called on one floor and they didn't know who she was, the floor she'd been on. And I'd been in that day and they didn't tell me she was moving.” It was incredibly frustrating, “I'd just had it with the sort of organizational structure of the hospital.”
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- Information
- Rights Come to MindBrain Injury, Ethics, and the Struggle for Consciousness, pp. 179 - 195Publisher: Cambridge University PressPrint publication year: 2015