A New Holistic-Evolutive Approach to Pediatric Palliative Care

This book illustrates why a holistic approach is important in Pediatric Palliative Care (PPC). Readers will learn this approach has a “horizontal” axis, featuring the patients’ mental and physical needs, as well as their environments. It has also a “vertical axis”: the evolutive changes of the patients throughout their development and their illness, their aspirations and fears. An evolutive (or dynamic) approach is mandatory. Each child/parent has a different experience of illness and a different path to recovery that is influenced by their age, gender, culture, but also by the state of their grief. To take care of them, we need to know the state of the subjects we are dealing with throughout their evolution in age (children) and in sorrow (both children and parents). Jung’s and Piaget’ schemes will be of support. This book also helps caregivers to know what ethics is. It teaches a new insight on the word “ethics”: not a series of principles or norms, but an approach based on humanistic virtues. Two criteria will be proposed to this aim: an ethics based on the refusal of inauthentic behaviors (or those behaviors that are copies of animals or machines) and a new criterion that even children have some ethical duties (not based on rules, but on naturally acceptance that their sight is modulated by the presence of their parents and friends). This ethical approach is explained to caregivers in a practical mode, ready for clinical exigencies. This book is also unique because it demonstrates that PPC also involves the true care of caregivers. It will explain how to approach, measure and overcome caregivers’ burn-out. Special attention is devoted to the approach to babies’ and children’s pharmacological and non-pharmacological analgesia and sedation. Pain assessment methods will be illustrated, as well as the development of a PPC web on the territory. This text includes perinatal and neonatal PPC. The book will be of valuable support to all those intensivists, pediatricians, nurses, psychologists, physiotherapists and healthcare professionals working in PPC units. Preface Contents Part I: Pediatric Palliative Care: “Fundamentalia” 1: The First Obstacle Is in the Handle 1.1 Team-Hierarchy Responsibilities 1.2 Are Doctors Unhappy? 1.3 The Conundrum of Motivation References 2: Palliative Care Is Not a Synonym of End-of-Life Care 2.1 What Is Palliative Care? 2.2 Cultural Resistances 2.3 Heterogeneity of Pediatric Cases 2.4 The Prophecy of Florence Nightingale References 3: Neonatal and Perinatal Care 3.1 Three Paradoxes 3.1.1 First Paradox: Little Bodies Do Not Mean Little Grief 3.1.2 Second Paradox: Little Bodies Do Not Mean Little Pain 3.1.3 Third Paradox: Small Age Does Not Mean Small Rights 3.2 Perinatal Palliative Care References Part II: Communication with Children and Their Families 4: Words Can Break My Heart 4.1 Crucial Importance of the Interview 4.2 The False Myth of Empathy 4.3 Certain News Is Indelible 4.3.1 Silence 4.3.2 The Informed Consent References 5: Managing Grief and Its Phases 5.1 The Phases of Grief 5.2 The Pathological Grief 5.3 Communicating with the Depressed Child or Parent 5.4 The Experience of Loss 5.5 The Risk of Suicide 5.6 Interventions Aimed at the Family 5.7 Interventions Aimed at Caregivers References 6: Challenges in Communication with Parents and Children 6.1 It Is Difficult to Use the Word Death... 6.2 ... Much More That of a Child 6.3 Should We Talk of Their Death and Disease? 6.4 Speaking According to the Patient’s Character 6.5 Obstacles to Communication 6.6 What Helps in Communicating Bad News on Their Health to the Children? 6.7 Special Children References 7: The Models of Mental Growth 7.1 Changes of Comprehension Throughout Children’s Growth 7.2 Theory of Mind 7.3 Piaget’s Theories 7.4 How These Models Can Improve the Dialog with the Child About Illness References Part III: Advocates of the Child Who Cannot Speak 8: The Respect Due and Denied to Those Who Lack Speech 8.1 The Human Strength of the Speech 8.2 Mentally Impaired Children 8.3 Perinatal Patients References 9: The Communicative Features of Non-verbal Patients 9.1 Sensoriality and Pain in the Newborn 9.1.1 Sense Development 9.1.2 The Sense of Pain 9.2 Communication Skills of the Babies 9.2.1 The Newborn 9.2.2 The Toddler 9.3 Communication Strategies for Mentally Disabled Children 9.3.1 Pain Assessment in Mentally Disabled Children 9.4 Communicating with Children with Disabilities 9.5 Hearing and Vision Impairment References Part IV: What Is a Good Behavior (Aka Ethics) Intermezzo Protocols and the False Reassurance 10: Are You Sure to Know What “Ethics” Really Is? 10.1 Ethics, Virtues, and Protocols 10.1.1 First Premise: The Nonsensical Adjective “Ethical” 10.1.2 Second Premise: Mixing Up Ethics with Rules 10.2 A Synoptic Vision 10.3 Our Ethical Responsibilities 10.4 Children’s Ethical Responsibilities References 11: The Limits of Parental Authority 11.1 Parents Applying Ethical Rules 11.2 End-of-Life Requests References 12: To the Depth of Health Care 12.1 The Words That Describe Health Care 12.2 Health: Satisfaction Socially Supported 12.2.1 Health vs. Loneliness in End-of-Life Processes 12.3 Supporting Mental Hygiene for a Really Free Choice References 13: Children and Babies: Decisions on Their Health 13.1 Treating Every Newborn at All Costs? 13.2 Shifting Too Soon to Palliative Care 13.3 Prejudices Against Disabled Children References 14: The Pain Principle 14.1 Therapeutic Fury 14.2 The Best Interest Principle and Its Limitations 14.3 The Probabilistic Criterion 14.4 The Double Effect 14.5 The Least Harm Criterion 14.6 The Pain Principle References Part V: The Multiple Approach to Suffering 15: The Environment: The Base of Analgesic Efforts 15.1 Pain Is Not Just “Pain” 15.2 The Hospital as an Analgesic Tool 15.2.1 Pet-Assisted Therapy 15.2.2 Clown Therapy 15.2.3 Noise-Free Hospital 15.2.4 Meals and Child-Friendly Hospitals References 16: Assessment of Pain, of Sedation, and of Refractory Symptoms 16.1 Pain Assessment 16.2 Sedation 16.3 Refractory Symptoms References 17: Pharmacological and Non-Pharmacological Analgesia 17.1 Non-Pharmacological Analgesia 17.1.1 Rhythmic Patterns 17.2 Opioids and Other Analgesics 17.2.1 The Earliest Steps of Pharmacological Analgesia 17.2.2 Opioids and Opiates 17.2.3 Main Opioids Used in Pediatrics 17.3 Adjuvant Drugs 17.3.1 Steroids 17.3.2 Anticonvulsants 17.3.3 Antidepressants 17.3.4 Neuroleptics 17.3.5 Bisphosphonates and Calcitonin 17.3.6 Placebo 17.3.7 Antineoplastic Drugs 17.3.8 The Conundrum of Cannabinoids 17.3.9 Off-Label Drugs 17.4 Sedation References 18: Psychological Approach 18.1 Meaning-Based Approach 18.2 Dignity-Based Approach 18.3 Promoting Resilience in Stress Management 18.4 Mindfulness References Part VI: Palliative Care and Our Fears Intermezzo 19: Children’s Pain Scares us 19.1 Our Fears 19.2 The Three Fearful Paradoxes 19.2.1 Paradox of the Simultaneous Blooming and Dying 19.2.2 Irrational-Reason Paradox 19.2.3 Paradox of the Spectator’s Shadow References 20: Contagious Pains 20.1 Burnout 20.2 Overcoming Burnout References 21: The Fear of Death and the Errors It Provokes 21.1 How Fear Can Overshadow Our Judgment 21.2 Balancing Research and Respect References 22: Overcoming the Fear of Death 22.1 The Image of Death 22.2 Rituals 22.3 Perinatal Mourning 22.4 Assistance to the Sacredness of Life References Part VII: Types of Pediatric Palliative Care 23: Territorial Differentiation and Home Care 23.1 The Mission of Pediatric Palliative Care 23.2 Types of Approach 23.3 Home Care 23.4 Community-Based Pediatric Palliative Care References 24: The Pediatric Hospices 24.1 The Pediatric Hospice 24.2 Perinatal Hospices 24.3 Architectural and Structural Guidelines of Pediatric Hospices References 25: Palliative Care Integrated in the Hospital Ward and the Abundance Medicine 25.1 The Limits of Intensive Set for Palliative Care 25.2 Pediatric Intensive Care Units: Improvements 25.3 The Neonatal Intensive Care Unit 25.4 Parents’ Advice 25.5 Abundance Medicine 25.5.1 Healthcare Waste: Defensive Medicine 25.5.2 The SUV Effect 25.5.3 Abundance Medicine References 26: Conclusion