Interdisciplinary Pediatric Palliative Care

Preface
Preface
Acknowledgments
Contents
1: Principles of Palliative Care
	1.1	 Palliative Care History
	1.2	 Principles of Pediatric Palliative Care
	1.3	 Traditional and New Perspective Regarding Palliative Care
		1.3.1	 Estimating the Global Need for PPC
	1.4	 Level of Palliative Care
	1.5	 Structure of Palliative Care
		1.5.1	 Hospital-Based Palliative Care
			1.5.1.1	 Hospital Palliative Care Unit (HPCU)
			1.5.1.2	 Hospital Palliative Care Consultation Team
			1.5.1.3	 Outpatient (Ambulatory) Palliative Care Clinic
			1.5.1.4	 Palliative Care Day Service
			1.5.1.5	 Palliative Care Outreach/Home Care Service
			1.5.1.6	 Swing Beds
			1.5.1.7	 Integration of Palliative Care Services with the Emergency Department
			1.5.1.8	 Integrating Palliative Care with Intensive Care (ICU)
			1.5.1.9	 Integrated Pattern
		1.5.2	 Community-Based Palliative Care
			1.5.2.1	 Palliative Care in a Hospice Center
			1.5.2.2	 Palliative Care at Home
			1.5.2.3	 Day Clinic
	1.6	 Palliative Care Models
		1.6.1	 A Three-Tier Palliative Care Model for Children
		1.6.2	 Floating Clinic
		1.6.3	 Disease-Specific Embedded Model
		1.6.4	 Trigger-Based Clinic Embedded in the Oncology Space
		1.6.5	 Consultation-Based Clinic Using Oncology Clinic Space (Embedded)
		1.6.6	 Telehealth Clinic
		1.6.7	 Hub-Spoke Model of Palliative Care
	1.7	 Pediatric Oncology Palliative Care Interdisciplinary Team and the Role of the Nurse
	1.8	 Evaluating the Gap in Children’s Palliative Care Provision
	1.9	 Palliative Care in North of Iran
2: Communication
	2.1	 Communication and Communication Therapy
	2.2	 Challenges in Communication
		2.2.1	 Healthcare Professional-Led Barriers
		2.2.2	 Patient-Led Barriers
		2.2.3	 How to Deal with Aggressive Patients/Companions?
	2.3	 Communication Skills
		2.3.1	 Important Points in Communicating with the Child
	2.4	 Breaking Bad News
		2.4.1	 The Goals of Breaking Bad News
		2.4.2	 Approaches of Breaking Bad News
		2.4.3	 What Is the SPIKES Approach?
		2.4.4	 How Do People React to Receiving Bad News?
		2.4.5	 What Are the Precautions After Announcing the Bad News to People?
		2.4.6	 Handling Difficult Questions
		2.4.7	 Collusion
		2.4.8	 Dealing with Anger
3: Grief
	3.1	 Grief Definition
	3.2	 Types of Grief
		3.2.1	 Anticipatory Grief
		3.2.2	 Acute Grief
		3.2.3	 Normal Grief
		3.2.4	 Disenfranchised Grief
		3.2.5	 Complicated Grief
	3.3	 Stages of Grief
		3.3.1	 Denial
		3.3.2	 Anger
		3.3.3	 Bargaining
		3.3.4	 Depression
		3.3.5	 Acceptance
	3.4	 Grief Tasks
		3.4.1	 Notification and Shock
		3.4.2	 Experiencing the Loss
		3.4.3	 Reintegration
	3.5	 Bereavement
	3.6	 Children and Grief
	3.7	 Parents and Grandparents
	3.8	 Completion of the Grieving Process
	3.9	 Self-Care for Nurses
	3.10	 Preventing Compassion Fatigue and Burnout
	3.11	 Self-Assessment and Awareness
	3.12	 The Process of Bereavement
		3.12.1	 Fundamentals of Bereavement Assessment
			3.12.1.1	 Assessment
			3.12.1.2	 Intervention
		3.12.2	 Useful Points for Bereavement Intervention
	3.13	 Identifying Grief in a Child
	3.14	 Misconceptions about Children’s Bereavement
	3.15	 Questions that May be Asked
	3.16	 Child’s Participation in the Funeral Ceremony
	3.17	 Telling the Truth to the Child
	3.18	 Children’s Understanding and Reaction to Bereavement and Death at Different Ages
		3.18.1	 Infants’ and Toddlers’ Reactions to Death
		3.18.2	 Young Children (3 to 5 Years Old)
		3.18.3	 Young Children’s Reaction to Death
		3.18.4	 Reaction of School-Age Children (6 to 10 Years) Toward Death
		3.18.5	 Teenagers’ Reaction to Death
	3.19	 The Experience of Bereavement in Children
	3.20	 Grief Interventions
		3.20.1	 Send a Letter to the Person Who Lost the Child
		3.20.2	 Using the Symbol and Metaphor of the Cloud
		3.20.3	 Box of Nostalgia
		3.20.4	 Hints
		3.20.5	 Do Not Neglect Parent Mourning
		3.20.6	 Describe Life after Death to a Child
4: Spiritual Care
	4.1	 Spiritual Care Definition
	4.2	 Distinguishing “Religion” from “Spirituality”
	4.3	 The Process and Stages of Spiritual Care
	4.4	 Planning and Implementation of Spiritual Care
	4.5	 Evaluation and Documentation
	4.6	 Patient Scenario
		4.6.1	 Applying the Nursing Process
		4.6.2	 Planning and Implementing Nursing Interventions
		4.6.3	 Sample Documentation
		4.6.4	 Evaluation
5: Teamwork
	5.1	 Interdisciplinary Team
	5.2	 Enhancing Team Development
	5.3	 Models for Teamwork
		5.3.1	 Phases of Team Development
		5.3.2	 Dealing with Burnout and Compassion Fatigue
	5.4	 Organizational Culture and Context
	5.5	 Teams at Work
		5.5.1	 Indicators of Team Development, Functionality, and Effectiveness
			5.5.1.1	 Team Boundaries
			5.5.1.2	 Team Operation
			5.5.1.3	 Management of Suffering
			5.5.1.4	 Experience and Management of Time
	5.6	 Teams and Families
		5.6.1	 A Partnership in Care
	5.7	 Teams Working Together
		5.7.1	 Principles, Practices, and Particular Challenges
	5.8	 The Team’s Ability to Function with Competence
		5.8.1	 Commitment
		5.8.2	 Holding Environment
		5.8.3	 Interdisciplinary Collaboration and Open Teamwork
		5.8.4	 Assessing the Team’s Ability to Function with Competence
	5.9	 Directions for Research, Education, and Practice
6: Managing Symptoms in Pediatric Palliative Care
	6.1	 Addressing Pain Management in Children
		6.1.1	 Introduction
		6.1.2	 Pain
			6.1.2.1	 Pain Theories
			6.1.2.2	 Physical Pain in Patients with Cancer
			6.1.2.3	 Breakthrough Pain
			6.1.2.4	 Assessment of Pain
			6.1.2.5	 Pain Measurement Tools in Children
			6.1.2.6	 Pain Management
			6.1.2.7	 The Fundamental Principles of Pain Management
			6.1.2.8	 Pharmacological Management of Pain in Pediatric
		6.1.3	 Co-Analgesics or Adjuvants
			6.1.3.1	 Morphine Use in Pediatric
			6.1.3.2	 Morphine Side Effect Management in Pediatric
			6.1.3.3	 Challenges in Providing Appropriate Pain Management in Pediatric Palliative Care
			6.1.3.4	 Non-pharmacological Methods of Pain Relief
		6.1.4	 Summary
	6.2	 Managing Gastrointestinal-Associated Symptoms
		6.2.1	 Introduction
		6.2.2	 Nausea and Vomiting
			6.2.2.1	 Assessment
			6.2.2.2	 Management
		6.2.3	 Constipation
			6.2.3.1	 Assessment
			6.2.3.2	 Management
		6.2.4	 Diarrhea
			6.2.4.1	 Management
			6.2.4.2	 Management of Diarrhea
		6.2.5	 Anorexia and Cachexia
			6.2.5.1	 Management
		6.2.6	 Summary
	6.3	 Managing Common Respiratory Symptom in Pediatrics
		6.3.1	 Introduction
		6.3.2	 Dyspnea
			6.3.2.1	 Management of Dyspnea
			6.3.2.2	 Pharmacological Measures
		6.3.3	 Cough
			6.3.3.1	 Management of Cough
		6.3.4	 Hemoptysis
			6.3.4.1	 Management of Hemoptysis
		6.3.5	 Summary
	6.4	 Managing Psychological Symptoms in Pediatric Palliative Care
		6.4.1	 Introduction
		6.4.2	 Patient-Reported Outcomes Measurement Information System (PROMIS) Instrument
		6.4.3	 Anxiety
			6.4.3.1	 Causes of Anxiety
			6.4.3.2	 Assessment of Anxiety
			6.4.3.3	 Management of Anxiety
		6.4.4	 Depression
			6.4.4.1	 Management of Depression
		6.4.5	 Insomnia
			6.4.5.1	 Measures to Overcome Sleeping Issues
		6.4.6	 Psychological Interventions
			6.4.6.1	 Management of Common Psychological Issues
		6.4.7	 Summary
	6.5	 Management of Neurological Symptoms in Palliative Care
		6.5.1	 Myoclonus
		6.5.2	 Muscle Spasm
		6.5.3	 Delirium
		6.5.4	 Seizure
		6.5.5	 Pharmacological Management
		6.5.6	 Summary
	6.6	 Managing Skin-Associated Symptoms Among Children
		6.6.1	 Introduction
		6.6.2	 Pruritus
			6.6.2.1	 Assessment of Pruritus
			6.6.2.2	 Non-pharmacological Measures
			6.6.2.3	 Pharmacological Measures
		6.6.3	 Pressure Ulcer
			6.6.3.1	 Risk Groups for Pressure Ulcer
			6.6.3.2	 Causes of Pressure Ulcer
			6.6.3.3	 Strategies to Prevent Pressure Sores
		6.6.4	 Managing Malodorous Fungating Wounds in Pediatric
			6.6.4.1	 Determining the Origin of the Malodor
			6.6.4.2	 Assessment of Malodorous Fungating Wound in a Child
			6.6.4.3	 Management Strategies for Fungating Malodorous Wounds
			6.6.4.4	 Specific Measures for Controlling the Malodor
		6.6.5	 Summary
7: End-of-Life Care of Pediatric with Advanced Illness
	7.1	 End-of-Life Care of Pediatric
		7.1.1	 Communication
			7.1.1.1	 Measures to Enhance Communication
			7.1.1.2	 Ethical Considerations in Pediatric Palliative Care
			7.1.1.3	 Doctrine of Double Effect
		7.1.2	 Euthanasia
			7.1.2.1	 Location of End-of-Life Care
			7.1.2.2	 Management of Symptoms
		7.1.3	 Pain
			7.1.3.1	 Strategy for Managing Pain
			7.1.3.2	 The Death Rattle
			7.1.3.3	 Management Strategies
		7.1.4	 Dyspnea
			7.1.4.1	 Nutrition and Hydration
			7.1.4.2	 Advantages of Dehydration during the Terminal Phase
			7.1.4.3	 Family Support during near to Death
			7.1.4.4	 Bereavement Support Care
		7.1.5	 Summary
	7.2	 Pediatric Advance Care Planning
		7.2.1	 Introduction
		7.2.2	 Advance Care Planning
			7.2.2.1	 Elements of Pediatric Advance Care Planning
			7.2.2.2	 The Significance of the Multidisciplinary Team in Advance Care Planning
			7.2.2.3	 Implementation Strategies for Facilitating Advance Care Planning (ACP)
		7.2.3	 Summary
	7.3	 Compassion Fatigue in Pediatric Palliative Care Professionals
		7.3.1	 Introduction
			7.3.1.1	 Implementing Measures to Mitigate Compassion Fatigue
			7.3.1.2	 Compassion Satisfaction
			7.3.1.3	 Strategies to Improve Compassion Satisfaction
		7.3.2	 Summary
References
Index