Breath of Life: The Role of the Ventilator in Managing Life-Threatening Illnesses

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Approximately 90 percent of deaths from Duchenne Muscular Dystrophy (DMD) are the result of chronic respiratory failure and/or concurrent respiratory infection. Respiratory failure in neuromuscular diseases is of the restrictive type, resulting from progressive weakness of breathing muscles. The ventilator simply replaces or augments the failed bellows mechanism of the respiratory system. The use of assisted ventilation by individuals with Duchenne Muscular Dystrophy has been in effect for the past 25 to 30 years. As in other management issues of DMD, there is, and probably will continue to be, recurrent debate regarding the cost/benefit ratio of various treatment regimes. The authors come to this issue from an emotional, psychosocial, and ethical perspective, as well as a financial point of view. A necessary volume in any library's consumer health collection.
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Editorial Reviews

Public Library Quarterly
This book is appropriate for libraries with medical collections that include books that are a step beyond popular materials...This is not a book about triumph or loss with disease, but rather a serious, honest approach to the medical decisions about the issue.
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Product Details

  • ISBN-13: 9780810834880
  • Publisher: The Scarecrow Press, Inc.
  • Publication date: 9/15/2001
  • Pages: 288
  • Product dimensions: 6.20 (w) x 9.36 (h) x 0.94 (d)

Meet the Author

The American Institute of Life-Threatening Illness and Loss, a division of The Foundation of Thanatology, was established to promote improvements in psychology and medical care of critically ill patients. It is a public, nonprofit organization based at Columbia-Presbyterian Medical Center in New York and is directly affiliated with professionals in numerous medical and psychological fields, making it the only organization of its kind.
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Table of Contents

List of Contributors
1 A Review of Ventilator Use in Duchenne's Muscular Dystrophy 1
2 Life with Dignity - Death with Dignity 11
3 Cardiac Function in Duchenne's Muscular Dystrophy: Use of Radionuclide Ventriculography in Initial Evaluation, Progress, and Stress Testing 15
4 Living and Dying with Ventilator-Dependent Quadriplegia 21
5 Images of Life and Death 33
6 The Ventilator: Psychosocial and Medical Aspects 45
7 The Impact of Ventilation Technology: Contrasting Consumer and Professional Perspectives 53
8 Automony, Perception, and Empowerment: Issues in Achieving Quality of Life for Ventilator-Dependent Individuals 65
9 Discontinuing Ventilator Support at Home: Clinical Experience with Amyotrophic Lateral Sclerosis in California 71
10 Description of Self 85
11 Ethical Issues Related to the Special Care Unit 87
12 Case History Report - The Atypical Patient: An Adolescent with ALS in an ICU 93
13 Use of Long-Term Assisted Mechanical Ventilation in Patients with Spinal Muscular Atrophy 99
14 Psychosocial Stresses and Coping Resources in Families Caring for Ventilator-Assisted Children at Home 107
15 Ethical Problems Concerning Treatment of and Attitude toward Chronic Respiratory Insufficiency in Muscular Dystrophy 115
16 Chronic Ventilator Support at Home for Infants and Children with Ventilatory Muscle Weakness 121
17 Discontinuation of Ventilatory Support: A Personal Perspective 129
18 The Ventilator - A Way to a Positive Life 133
19 A 35-Year Perspective on the Utilization of Mechanical Ventilation As Experienced by the Author 137
20 Options for Living and Dying in Amyotrophic Lateral Sclerosis 147
21 Impact on the Family 153
22 Ventilator Users, Home Care, and Independent Living: A Historical Perspective 161
23 Prolongation of Life Spans of Duchenne's Muscular Dystrophy Patients in the Hospital Care Program in Japan 167
24 Cardiovascular Abnormalities in Duchenne's Muscular Dystrophy 171
25 A Historical Perspective on the Use of Noninvasive Ventilatory Support Alternatives 185
26 An Astronaut on Earth 203
27 Ventilating Feelings 215
28 Repression, Regression, and Respiration: Ventilators and the Post-Polio Patient 221
29 Regional Home Care Program for Ventilator-Dependent Patients: Report of the First Five Years 233
30 Occupational Therapy and the Ventilator-Dependent Patient: The Impact on Psychosocial and Motoric Aspects of Activities of Daily Living 243
31 Going Home on a Ventilator: A Nursing Model 247
32 Technologically Dependent Children: Their Effect on the Hospital System 253
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