BOOK
Textbook of Interdisciplinary Pediatric Palliative Care E-Book
Joanne Wolfe | Pamela Hinds | Barbara Sourkes
(2011)
Additional Information
Book Details
Abstract
The Textbook of Interdisciplinary Pediatric Palliative Care, by Drs. Joanne Wolfe, Pamela Hinds, and Barbara Sourkes, aims to inform interdisciplinary teams about palliative care of children with life-threatening illness. It addresses critical domains such as language and communication, symptoms and quality of life, and the spectrum of life-threatening illnesses in great depth. This comprehensive product takes a first-of-its-kind team approach to the unique needs of critically ill children. It shows how a collaborative, interdisciplinary care strategy benefits patients and their families. If you deal with the complex care of critically ill children, this reference provides a uniquely integrated perspective on complete and effective care.
- Respect interdisciplinary perspectives, and provide the most comprehensive care.
- Use an integrated approach to address the physical, psychological, social, and spiritual needs of children and their families.
- Understand and heed your strengths and vulnerabilities in order to provide the best care for your patients.
- Recognize the necessity of linking hospital-based palliative care with community resources.
- Implement consistent terminology for use by the entire palliative care team.
- Access the full text online with regular updates and supplemental text and image resources.
Table of Contents
| Section Title | Page | Action | Price |
|---|---|---|---|
| Front Cover | Cover | ||
| Textbook of Interdisciplinary Pediatric Palliative Care | i | ||
| Copyright | ii | ||
| Dedication | iii | ||
| About the Artist | v | ||
| Contributors | vii | ||
| Foreword | xv | ||
| Preface | xvii | ||
| Contents | xix | ||
| Section 1: Setting the Stage | 1 | ||
| Chapter 1: The Language of Pediatric Palliative Care | 3 | ||
| Definition of Terms | 3 | ||
| Summary | 5 | ||
| References | 6 | ||
| Chapter 2: Epidemiology and the Care of Children with Complex Conditions | 7 | ||
| Patients and Individual-Level Systems | 7 | ||
| Family Systems | 10 | ||
| Healthcare Systems | 12 | ||
| Regional and National Systems | 14 | ||
| Summary | 16 | ||
| References | 16 | ||
| Chapter 3: Children’s Voices: The Experience of Patients and Their Siblings | 18 | ||
| Developmental Considerations | 18 | ||
| Clinical Themes | 22 | ||
| The Voice of the Child in Decision-Making | 26 | ||
| Role of the Mental Health Professions and Child Life | 27 | ||
| Summary | 29 | ||
| References | 29 | ||
| Chapter 4: Understanding the Illness Experience and Providing Anticipatory Guidance | 30 | ||
| Establishing a Therapeutic Alliance | 30 | ||
| Understanding the Illness Experience | 30 | ||
| Providing Anticipatory Guidance | 35 | ||
| Bereavement Care | 38 | ||
| Summary | 38 | ||
| References | 38 | ||
| Chapter 5: Anticipatory Grief and Bereavement | 41 | ||
| The Family Unit | 41 | ||
| Anticipatory Grief | 44 | ||
| Bereavement | 45 | ||
| Clinical Vignettes | 50 | ||
| Summary | 53 | ||
| References | 53 | ||
| Chapter 6: The Team | 55 | ||
| Team Development | 55 | ||
| Teams at Work | 57 | ||
| Teams and Families | 58 | ||
| The Team’s Ability to Function with Competence | 59 | ||
| Assessing the Team’s Ability to Function with Competence | 61 | ||
| Directions for Research, Education, and Practice | 62 | ||
| Summary | 63 | ||
| References | 63 | ||
| Chapter 7: Settings of Care | 64 | ||
| Epidemiological Factors in Death in Childhood | 64 | ||
| The Hospital | 64 | ||
| The Intensive Care Unit | 65 | ||
| The Intensivist’s Role | 66 | ||
| Decision-Making in the ICU Setting | 66 | ||
| Emergency Medical Services | 68 | ||
| The Community | 69 | ||
| Home-Based Hospice Services | 70 | ||
| Free-Standing Palliative and Respite Care Facilities | 70 | ||
| School | 71 | ||
| Reimbursement Issues | 71 | ||
| Summary | 72 | ||
| References | 72 | ||
| Chapter 8: Program Development and Implementation | 74 | ||
| Phase I: Planning | 74 | ||
| Systems Assessment: Align with Institutional Goals | 75 | ||
| Phase II: Creating the Foundation: Program Implementation | 76 | ||
| Create an Identity: Choosing a Program Name | 77 | ||
| Service Delivery | 77 | ||
| Resource Development | 80 | ||
| Creating a Business and Financial Plan | 82 | ||
| Interfacing with Community Partners | 84 | ||
| Advocacy: Demand Driving Resource Development | 85 | ||
| Phase III: Ensuring Sustainability | 85 | ||
| Phase IV: Surviving Success | 87 | ||
| References | 87 | ||
| Suggested Readings | 88 | ||
| Chapter 9: The Evidence Base | 90 | ||
| Definition of Evidence-Based Practice | 90 | ||
| Levels of Evidence Used in Practice Guideline Development and Implications for Pediatrics | 90 | ||
| Searching the Palliative Care Literature | 92 | ||
| Examples of EBP in Pediatric Palliative Care | 93 | ||
| Efforts to Build the Evidence Base in Pediatric Palliative Care | 93 | ||
| Limitations of Evidence in Pediatric Palliative Care | 94 | ||
| Summary | 94 | ||
| References | 94 | ||
| Chapter 10: Research Considerations in Pediatric Palliative Care | 96 | ||
| Priority Areas for Research | 96 | ||
| Methodological Challenges | 97 | ||
| Ethics | 101 | ||
| Dissemination and Knowledge Exchange | 102 | ||
| Summary | 102 | ||
| Acknowledgments | 102 | ||
| References | 102 | ||
| Chapter 11: Interdisciplinary Education and Training | 104 | ||
| Principles of Adult Education | 104 | ||
| Principles of Interdisciplinary Education | 104 | ||
| The Pedagogy of Pediatric Palliative Care | 104 | ||
| References | 109 | ||
| Suggested Resources | 110 | ||
| Chapter 12: Faith, Hope, and Love: An Interdisciplinary Approach to Providing Spiritual Care | 111 | ||
| Spirituality and World View | 111 | ||
| Faith and/or Spiritual Screening and Assessment | 113 | ||
| Providing Spiritual Care: A Theological Concept | 114 | ||
| References | 117 | ||
| Suggested Readings | 118 | ||
| Chapter 13: The Interface of Ethics and Palliative Care | 119 | ||
| The Overlapping Domains of Bioethics and Palliative Care | 119 | ||
| The Nature of the Work | 120 | ||
| The Future | 120 | ||
| Summary | 122 | ||
| References | 122 | ||
| Section 2: Relationships: Structure and Communication | 123 | ||
| Chapter 14: Child Relationships | 125 | ||
| The Relationship with the Child | 125 | ||
| Influence of Familial Relationships | 126 | ||
| Communication Across the Disease Course | 127 | ||
| Developmental Issues in Speaking with Children about Palliative Care and Death | 128 | ||
| Cultural Issues | 129 | ||
| Boundaries—Where the Relationship with the Child Begins and Ends | 129 | ||
| Saying Goodbye | 131 | ||
| References | 132 | ||
| Suggested Readings | 133 | ||
| Chapter 15: Parent and SiblingRelationships and the Family Experience | 135 | ||
| Family-Centered Pediatric Palliative Care | 135 | ||
| Developing and Changing Goals of Care | 139 | ||
| Considerations of Child Developmental Stages in Understanding and Discussing Death | 140 | ||
| Family Conflict | 140 | ||
| Interdisciplinary Teamwork | 141 | ||
| Communication | 142 | ||
| Collaborative Decision Making | 143 | ||
| End-of-Life and Palliative Care Family Conferences | 143 | ||
| Providing Family Psychosocial Support and Enhancing Family Resilience | 144 | ||
| Integration of Pediatric Palliative Care Principles into Practice | 145 | ||
| Future directions | 145 | ||
| References | 146 | ||
| Chapter 16: Team Relationships | 148 | ||
| Team Structures | 148 | ||
| Benefits and Challenges of Team-Based Palliative Care | 149 | ||
| Forming and Sustaining Teams: Recipes for Success and Failure | 150 | ||
| Frameworks of Team Function and Dysfunction | 152 | ||
| Summary | 157 | ||
| References | 158 | ||
| Chapter 17: Relationships with the Community: PalliativeCare and Beyond | 159 | ||
| Palliative Care and the Community | 159 | ||
| Assurance at the Interface | 161 | ||
| Relationships Within the Pediatric Palliative Care Team | 163 | ||
| Assuring Patient Privacy and Confidentiality | 163 | ||
| Palliative Care and the General Pediatrician | 163 | ||
| Palliative Care and the Fabric of a Family’s Life | 166 | ||
| Summary | 167 | ||
| References | 167 | ||
| Suggested Reading | 167 | ||
| Chapter 18: Self-Care: The Foundation of Care Giving | 168 | ||
| Relationship to Self | 169 | ||
| A Relationship-Centered Approach to Care | 170 | ||
| The Private Worlds of Professionals | 171 | ||
| What Are Some of the Rewards? | 173 | ||
| Clinician Suffering and Self-Care | 174 | ||
| Team Care | 177 | ||
| Summary | 177 | ||
| References | 178 | ||
| Chapter 19: Practical Aspects of Communication | 179 | ||
| What Is Effective Communication? | 179 | ||
| Specific Palliative Care Communication Topics | 183 | ||
| Communicating Effectively About What to Expect When Death is Near | 187 | ||
| Using Communication to Affirm Core Values | 188 | ||
| References | 188 | ||
| Chapter 20: Introducing Palliative Care | 190 | ||
| Introducing Palliative Care | 191 | ||
| Summary | 194 | ||
| References | 194 | ||
| Chapter 21: Introducing Home-Based Palliative Care and Hospice | 195 | ||
| Recognizing the Barriers to Palliative Care | 195 | ||
| Forgoing the Search for the Dying Point | 196 | ||
| Avoiding Abandonment | 196 | ||
| Maintaining Hope | 197 | ||
| References | 198 | ||
| Chapter 22: Resuscitation | 199 | ||
| Summary | 202 | ||
| References | 203 | ||
| Chapter 23: Palliative Sedation | 204 | ||
| Terminology | 204 | ||
| Setting the Stage | 205 | ||
| Communication with the Family Before and During PST | 207 | ||
| Communication with the Child | 208 | ||
| Team Communication | 208 | ||
| Documentation | 209 | ||
| Physician Considerations | 209 | ||
| Nursing Considerations | 211 | ||
| Monitoring | 211 | ||
| Considerations for the Interdisciplinary Team | 212 | ||
| Ethical Considerations | 212 | ||
| Summary | 212 | ||
| References | 213 | ||
| Chapter 24: Organ Donation | 215 | ||
| Factors Influencing Willingness to Donate | 215 | ||
| Religiosity | 215 | ||
| Race and Ethnicity | 215 | ||
| Parent and Adolescent Perspectives | 216 | ||
| Pastoral Care Perspectives | 217 | ||
| Social Work Perspectives | 217 | ||
| Nursing Perspectives | 217 | ||
| Physician Perspectives | 218 | ||
| Organ Procurement Organizations’ Perspectives | 218 | ||
| Ethical Considerations | 218 | ||
| Discussing Organ Donation with the Family | 218 | ||
| Models for Interdisciplinary Communication | 219 | ||
| Summary | 220 | ||
| References | 220 | ||
| Chapter 25: Autopsy | 221 | ||
| Unique Characteristics of Autopsies in the Pediatric Age Group | 221 | ||
| The Consent to Autopsy | 222 | ||
| Legal Aspects of Autopsy | 223 | ||
| Logistics of Autopsy | 223 | ||
| Perspective of Families about Autopsy | 224 | ||
| Perspective of Physicians about Autopsy | 225 | ||
| Future of Pediatric Autopsy | 225 | ||
| Summary | 226 | ||
| References | 226 | ||
| Section 3: Easing Suffering | 228 | ||
| Reference | 228 | ||
| Chapter 26: Psychological Symptoms | 229 | ||
| Anxiety in Pediatric Patients | 229 | ||
| Depression in Pediatric Patients | 231 | ||
| Assessment and Management of Suicide in Children and Adolescents | 233 | ||
| Summary | 237 | ||
| References | 237 | ||
| Chapter 27: Neurological Symptoms | 239 | ||
| General Principles | 239 | ||
| Symptoms | 240 | ||
| Non-Seizure Movements | 243 | ||
| Summary | 247 | ||
| References | 248 | ||
| Chapter 28: Delirium | 251 | ||
| Definition | 251 | ||
| Prevalence and Epidemiology | 253 | ||
| Etiology | 256 | ||
| Pathogenesis | 256 | ||
| Assessment | 257 | ||
| Treatment | 257 | ||
| Sequelae of Delirium | 261 | ||
| Summary | 263 | ||
| References | 263 | ||
| Chapter 29: Fatigue | 266 | ||
| Research on Fatigue in Children | 266 | ||
| Assessment of Fatigue | 267 | ||
| Interventions for Fatigue | 268 | ||
| Complementary and Alternative Medicine | 270 | ||
| Summary | 270 | ||
| References | 270 | ||
| Chapter 30: Sleep and Insomnia | 272 | ||
| Classification of Sleeping Problems in Childhood | 272 | ||
| Growth and Development | 272 | ||
| Sleeping Difficulties in Healthy Children | 272 | ||
| Children with Life-Threatening Conditions | 272 | ||
| Effect of Hospitalization on Sleep | 274 | ||
| Psychosocial Factors | 274 | ||
| Assessment | 275 | ||
| Management | 277 | ||
| Pharmacologic Management | 277 | ||
| Nonpharmacologic Management | 279 | ||
| Complementary and Alternative Medicine Treatments | 281 | ||
| Summary | 282 | ||
| Acknowledgments | 282 | ||
| References | 282 | ||
| Chapter 31: Pain Assessment and Management | 284 | ||
| Pain Management, the Interdisciplinary Team, and the Child with a Life-Threatening Illness | 284 | ||
| The Interdisciplinary Team and the Alleviation of Suffering | 285 | ||
| Supporting a Culture of Quality Improvement in Pediatric Pain Management Related to Palliative Care | 285 | ||
| Epidemiology of Pain in Children with Life- hreatening Illnesses | 286 | ||
| Pain Mechanisms: Implications for Treatment | 287 | ||
| Pathophysiology of Tumor-Related Pain in Childhood Cancer | 287 | ||
| Pain Assessment in Children with Life-Threatening Illnesses | 287 | ||
| Adequate Pain Management at the End of Life is Achievable | 289 | ||
| Pain Management Guidelines | 290 | ||
| The Pediatric Pain Crisis | 293 | ||
| Sedation in Pediatric Palliative Care | 296 | ||
| Summary | 297 | ||
| References | 297 | ||
| Chapter 32: Respiratory Symptoms | 300 | ||
| Dyspnea | 300 | ||
| Cough | 302 | ||
| Pulmonary Hemorrhage | 303 | ||
| Pleural Effusions and Pneumothorax and/or Hemothorax | 303 | ||
| Consideration of Tracheostomy | 305 | ||
| Special Considerations for Patients with Cystic Fibrosis | 306 | ||
| Apnea | 307 | ||
| Abnormal breathing patterns | 307 | ||
| Summary | 307 | ||
| Acknowledgments | 309 | ||
| References | 309 | ||
| Chapter 33: Gastrointestinal Symptoms | 311 | ||
| Nausea and Vomiting | 312 | ||
| Constipation | 315 | ||
| Diarrhea | 317 | ||
| Anorexia and Cachexia | 319 | ||
| Distressing Symptoms of Mouth and Throat | 321 | ||
| Bowel Obstruction | 327 | ||
| Feeding Intolerance | 329 | ||
| References | 331 | ||
| Chapter 34: Hematologic Symptoms | 335 | ||
| Anemia | 335 | ||
| Guidelines for Transfusion | 337 | ||
| Specifications of the Product | 337 | ||
| Transfusion Side Effects | 338 | ||
| Alternatives to Transfusion | 339 | ||
| Palliative Care Considerations in Secondary Anemia | 340 | ||
| Palliative Care Considerations for Primary Anemia | 342 | ||
| Thrombocytopenia and Functional Platelet Disorders | 343 | ||
| Bleeding Disorder | 345 | ||
| Guidelines for Transfusion | 346 | ||
| Mentoring | 346 | ||
| Summary | 348 | ||
| Acknowledgments | 348 | ||
| References | 348 | ||
| Chapter 35: Dermatologic Conditions and Symptom Control | 350 | ||
| Psychosocial Impact of Dermatologic Conditions | 350 | ||
| Generalized Pruritus | 352 | ||
| Management of Specific Conditions | 353 | ||
| Uremia | 354 | ||
| Wounds | 357 | ||
| Treatment | 359 | ||
| Ancillary, Advanced, and New Technologies | 363 | ||
| Symptom Control | 364 | ||
| Acknowledgments | 366 | ||
| References | 366 | ||
| Chapter 36: Easing Distress When Death is Near | 368 | ||
| Interdisciplinary Caring | 368 | ||
| Recognizing When Death is Imminent | 368 | ||
| Easing Child Distress | 370 | ||
| Easing Family Distress | 374 | ||
| At the Time of Death | 375 | ||
| After Death Care | 376 | ||
| Summary | 382 | ||
| References | 383 | ||
| Section 4: Illness and Treatment Experience | 385 | ||
| Reference | 386 | ||
| Chapter 37: Prenatal and Neonatal Palliative Care | 387 | ||
| IDT Clinicians and Roles | 387 | ||
| Professional Caregiver Suffering and Moral Distress | 390 | ||
| The Four Periods of Prenatal and Neonatal Palliative Care | 390 | ||
| End of Life and Bereavement Care | 398 | ||
| Conclusion | 400 | ||
| References | 400 | ||
| Chapter 38: Inherited Life-Threatening Illnesses | 402 | ||
| Specific Care Challenges | 402 | ||
| Role of Diagnostic Workup | 404 | ||
| Introducing the Topic of Palliative Care | 406 | ||
| Summary | 407 | ||
| References | 407 | ||
| Chapter 39: Neurologic Diseases | 408 | ||
| Pediatric Palliative Care and Neurologic Conditions | 408 | ||
| Patient Population | 408 | ||
| What to Expect: Life Expectancy Literature | 410 | ||
| Framework for Approaching Prognosis, Uncertainty, and Decision Making | 410 | ||
| Documenting, Communicating, and Coordinating Plans of Care | 412 | ||
| Symptom Management | 413 | ||
| Autonomic Dysfunction | 416 | ||
| Medication Toxicities | 417 | ||
| Agitation and Delirium | 417 | ||
| Seizures | 417 | ||
| Abnormal Movements: Dystonia and Posturing | 417 | ||
| Sleep Disturbance | 418 | ||
| Benzodiazpines | 418 | ||
| Methadone | 418 | ||
| Respiratory Health in Children with NI | 418 | ||
| Dyspnea | 419 | ||
| Secretions | 420 | ||
| Nausea, Retching, Vomiting, and Feeding Intolerance | 420 | ||
| Persistent Feeding Intolerance | 422 | ||
| Medical Nutrition and Hydration | 423 | ||
| Care Teams to Meet the Complexity of Needs | 423 | ||
| End-of-Life Care | 423 | ||
| Autopsy, Brain and Tissue Bank, and Organ Donation | 424 | ||
| Bereavement | 424 | ||
| Future Directions and Ongoing Challenges | 424 | ||
| Acknowledgments | 424 | ||
| References | 425 | ||
| Chapter 40: Advanced Heart Disease | 428 | ||
| Incidence and Epidemiology of Congenital Heart Disease and Pediatric Advanced Heart Disease | 428 | ||
| Evolution of Palliative Care in Advanced Heart Disease in Children | 429 | ||
| Future Issues | 436 | ||
| References | 436 | ||
| Chapter 41: Cystic Fibrosis | 438 | ||
| An Overview | 438 | ||
| The Current Approach | 439 | ||
| Understanding the Goals of Care for the CF Team | 441 | ||
| Integrating the Palliative Care Team into CF Care | 442 | ||
| After Death | 447 | ||
| Summary | 450 | ||
| References | 450 | ||
| Chapter 42: Solid Organ Transplant | 453 | ||
| Transplant Evaluation | 453 | ||
| Transplant Preparations | 454 | ||
| Transplant | 455 | ||
| Post-Transplant Period | 456 | ||
| End of Life | 458 | ||
| Summary | 459 | ||
| References | 459 | ||
| Chapter 43: Integration of Therapeutic and Palliative Care in Pediatric Oncology | 460 | ||
| The Need for Palliative Care Services in Pediatric Oncology | 461 | ||
| Phase I Clinical Trials in the Context of Palliative Care | 463 | ||
| Symptoms and Suffering of Children with Cancer | 464 | ||
| Summary | 467 | ||
| References | 467 | ||
| Chapter 44: Primary and Acquired Immunodeficiency Disorders | 470 | ||
| Epidemiology of Inherited and Acquired Immunodeficiency Syndromes in Childhood | 471 | ||
| Symptoms, Distress, and Quality of Life in Children and Adolescents with Immunodeficiency Disorders | 474 | ||
| Special Considerations Unique to Children and Adolescents with HIV/AIDS | 475 | ||
| Interdisciplinary Care of Children with Immunodeficiency Syndromes | 476 | ||
| HIV End Stage and End-of-Life Concerns | 477 | ||
| Bereavement Needs of Families and Healthcare Providers | 477 | ||
| Conclusion | 478 | ||
| References | 478 | ||
| Index | 481 |