دانلود کتاب Palliative Care in Hematologic Malignancies and Serious Blood Disorders: A Clinical Guide

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Preface
Contents
Contributors
1: Introduction
References
Part I: Hematologic Malignancies and Serious Blood Disorders
2: Hematologic Malignancies
Introduction
Lymphoma
Low-Grade B-Cell Lymphoma
Mantle Cell Lymphoma
Large B-Cell Lymphoma
Primary DLBCL of the Central Nervous System
EBV-Positive Diffuse Large B-Cell Lymphoma
Primary Mediastinal (Thymic) Large B-Cell Lymphoma
Plasmablastic Lymphoma
Human Herpesvirus-8-Positive Diffuse Large B-Cell Lymphoma
Primary Effusion Lymphoma
Burkitt Lymphoma
T-Cell Lymphoma
Plasma Cell Disorders
Multiple Myeloma
Waldenström Macroglobulinemia
Immunoglobulin Light Chain Amyloidosis
Acute Myeloid Leukemia
Acute Promyelocytic Leukemia
Myelodysplastic Syndrome
Acute Lymphoblastic Leukemia
Mixed Phenotype/Ambiguous Lineage Leukemia
Chronic Myeloid Leukemia
Chronic Lymphocytic Leukemia
Hematopoietic Cell Transplantation
Autologous HCT
Allogeneic HCT
Long-Term Impact of Transplant on Patient-Reported Outcomes
Conclusion
References
3: Hematopoietic Cell Transplantation
Overview
Safety, Efficacy, and Availability of Transplantation
Indications and Timing of Transplantation
Clinical Algorithms and Characteristics
Stem Cell Source
Conditioning Regimen
GVHD Prophylaxis
The Early Post-transplant Course
Engraftment
Relapse
GVHD
Infection and Organ Toxicity
Late Effects
Role of Palliative and Supportive Care in Transplantation
Evidence for the Role of Palliative and Supportive Care in the Management of Patients and Caregivers
Goals
Conclusions
References
4: Serious Blood Disorders: A Focus on Sickle Cell Disease and Hemophilia
Introduction to Inherited Nonmalignant Blood Disorders
Sickle Cell Disease
Overview
Epidemiology and Patterns of Inheritance
Disease Manifestations, Signs, and Symptoms
Vaso-occlusive Crises
Overview of Pain Crises
Overview of VOCs
Treatment Options
Prognosis and Lifespan Considerations
Transitions of Care
Pediatric to Adult Transitions
Challenges in Providing Comprehensive Adult Care
Acute and Chronic Pain Management
Opioid and Multimodality Therapy Plans
Optimizing Pain Management through Technology
Integrative Medicine Approaches
Considerations in Psychosocial Support
Mental Health Considerations
Cognitive Impairment and the Impact of Silent Cerebral Infarctions
Quality of Life Estimation Tools
Adult Sickle Cell Quality of Life Measurement Information System
Patient-Reported Outcome Measurement Information System
Palliative Care and Sickle Cell Disease
Hemophilia A and B
Overview
Epidemiology and Patterns of Inheritance
Disease Manifestations, Signs, and Symptoms
Treatment Options
Disease Complications: Inhibitor Formation and Treatment
Prognosis and Lifespan Considerations
Transitions of Care
Pediatric to Adult Transitions
Inpatient to Outpatient Transitions and Perioperative Management
Hemophilic Arthropathy and Pain Management
Overview and Factor Prophylaxis
Integration of Physical Therapy
Nonsteroidal Anti-inflammatory Drugs (NSAIDs) and Opioids
Intervention-Based Pain Management
Considerations in Psychosocial Support
Historical Caveats and Patient Trust
Mental Health Considerations
Financial Challenges in Hemophilia Management
Quality of Life Estimation Tools
Hemophilia Activities List
The Quality of Life Assessment Instrument for Children and Adolescents with Hemophilia
Advance Care Planning
Palliative Care and Hemophilia Management
References
5: Cellular Therapies: A Description of the Types of Existing Cellular Therapies and Associated Toxicities
Introduction
Chimeric Antigen Receptor T-Cell (CAR-T) Therapy
Patient Selection and CAR-T Production
CAR-T Product Manufacture
Pre- and Post-infusion Care
Complications of CAR-T Cell Therapy
Cytokine Release Syndrome
CRS: Clinical Presentation, Grading, and Management
Immune Effector Cell-Associated Neurotoxicity Syndrome
ICANS: Clinical Presentation, Grading, and Management
Other Complications of CAR T-Cell Therapy
The Future of CAR-T Therapy
Gene Therapy
Patient Selection, Product Manufacture, and Administration
Complications of Gene Therapy
Antiviral Cytotoxic T-Lymphocyte Therapy
CTLs: Patient Selection, Product Matching, and Administration
CTLs: Complications
Other Cellular Immunotherapies
Donor Regulatory T-Cells
Donor Anticancer T-Cells
Activated Cytokine-Induced Killer Cells
The Future of Cellular Therapies
References
Part II: Palliative Care
6: Palliative Care Approach for Patients with Hematologic Malignancies and Other Serious Blood Disorders
Introduction
Pain and Symptom Management
Life-Affirming, Patient-Centered Care
Neither Hasten nor Postpone Death
Integrating Psychological and Spiritual Care
Emphasis on Patient Function
Caregiver Support
Interdisciplinary Team Model
Improved Quality of Life and Patient Outcomes
Proactive Care through Timely Involvement
Summary
References
7: Hematology/Oncology and Palliative Care Collaboration
Palliative Care Consultation Within Hematology/Oncology
Palliative Care Consultation Within Malignant Hematology
Integration of Palliative Care in Hematology/Oncology: Models of Palliative ­Care-Including Specialty Clinics and Specialty Palliative Care Clinicians
Models of Palliative Care Integration for Malignant Hematology
Primary Palliative Care Integration Model
Trigger-Based Model
Embedded Model
Sickle Cell Disease as a Model of Palliative Care Integration for Serious Blood Disorders
Barriers to Access of Palliative Care
Psychosocial Role Confusion
Palliative Care Training for Hematologists/Oncologists
Pearls and Pitfalls of Palliative Care Integration
Pearls
Pitfalls
References
8: Hematologic Malignancy and Palliative Care Integration in the Outpatient Setting
Defining the Outpatient Population
Access to Early Intervention Palliative Care
What Defines Early Palliative Care?
Content of Palliative Care Visits
Barriers to Earlier Palliative Care in HM
Collaboration Between Palliative Care and Hematology Oncology Clinicians
Communication
Collaboration Challenges
Outpatient Symptom Management
Goals-of-Care Conversations and Hospice Referrals
Challenges with GOC Conversations in Patients with HM
Hospice Referral Barriers (Transfusion Dependency, When to Stop Treatment)
Location of Death
Conclusion
References
Part III: The Intersection of Palliative Care and Hematologic Malignancies and Serious Blood Disorders: Key Issues
9: Communication Throughout the Illness Trajectory
Introduction
The Language of Palliative Care
Patient and Caregiver-Centered Language
Non-abandonment
Failure
Dignity, Quality of Life, and Suffering
Metaphors
Communication Between Professionals
Resuscitation Status
Appropriate
Chronic Patient
Denial
Discussing Difficult News
Why Disclose Difficult News?
Who Should Discuss Difficult News?
When Should Difficult News Be Discussed?
Effective Communication Techniques
Cognitive Needs—The Need to Know
Emotional Needs—The Need to Feel Known
Putting It All Together
Family Meetings
Before the Meeting
During the Meeting
After the Meeting
Conclusion
References
10: Decision-Making Involvement Throughout the Illness Trajectory
Introduction
Role of the Pediatric Patient in Decision-Making
Factors Influencing Patient Decision-Making
Capacity, Competence, and Assent
Guardianship and Surrogate Decision-Making
Disease Characteristics
Patient Decision-Making Preferences
Role of the Caregiver in Decision-Making
Caregiver Decision-Making Preferences
Caregiver Interference and Discordant Beliefs
Role of the Clinician
Facilitating Pediatric Patient Involvement in Decision-Making
Treatment-Related Decision-Making and the Appropriate Use of Choice
End-of-Life Decision-Making Involvement
Conclusions
Caring for Patients with Hematologic Malignancies
Summary
References
11: Advance Care Planning in Hematologic Malignancies and Other Serious Blood Disorders
Definitions of Advance Care Planning
Benefits of Advance Care Planning
Barriers to Advance Care Planning
Recommended Approach to ACP Discussions
Communication About ACP
Resuscitation Status Discussion
Written Advance Directives
Practical Considerations
Conclusion
References
12: Measuring Quality of Life and Health-Related Quality of Life
Introduction
Defining Quality of Life
Health-Related Quality of Life (HRQL)
HRQL Instrument Development: Applications to PC Clinical Practice
Instrument Selection
Short Form-36 (SF-36) and Short Form-12 (SF-12)
European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30)
EuroQOL-Five Dimensions (EQ-5D)
The Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System
Health Utilities Index (HUI)
Adult Instruments: Single Domain
Adult Instruments: Symptom Assessments
MD Anderson Symptom Inventory (MDASI)
Memorial Symptom Assessment Scale (MSAS) and Memorial Symptom Assessment Scale Short Form (MSAS-SF)
Patient-Reported Outcome Common Terminology Criteria for Adverse Events (PRO-CTCAE)
Pediatric HRQL and Instrument Development
Patient-Reported Measurement Information System (PROMIS)
Real-Life Clinical Examples
Innovations in the Incorporation of QOL and Symptom Assessment in PC
References
13: Pain Syndromes of Hematologic Malignancies
Introduction
Disease-Related Pain Syndromes
Plasma Cell Dyscrasias
Lytic Bone Disease
Waldenstrom Macroglobulinemia
Peripheral Neuropathy
Myeloproliferative Neoplasms
Secondary Erythromelalgia
Pruritus
Treatment-Related Pain Syndromes
Bone Pain Associated with Granulocyte-Stimulating Factor
Mucositis
Avascular Necrosis
Graft-Versus-Host Disease
Pathophysiology of Acute Graft-Versus-Host Disease
Pathophysiology of Chronic Graft-Versus-Host Disease
Early Inflammation Injury
Chronic Inflammation and Tissue Injury
Aberrant Tissue Repair and Fibrosis
Pharmacologic Approaches to GVHD
Gastrointestinal GVHD
Symptoms
Pharmacologic Approaches to Pain
Nonpharmacologic Approaches
Musculoskeletal GVHD
Symptoms
Pharmacologic Approaches
Nonpharmacologic Approaches
Ocular GVHD
Symptoms
Pharmacologic Approaches
Nonpharmacologic Approaches
Skin GvHD
Symptoms
Pharmacologic Approaches
Nonpharmacologic Approaches
Care of the Person with Substance Use Disorder
Pain Assessment
Risk Assessment
Mitigation
Aberrant Behaviors
Conclusion
References
14: Symptoms in Advanced Hematologic Malignancies and Other Serious Hematologic Conditions
Introduction
Fatigue
Mechanism
Management
Cachexia
Mechanisms
Management
Mucositis
Mechanisms
Management
Pruritus
Mechanisms
Management
Hiccups
Mechanism
Management
Dyspnea
Mechanisms
Management
Delirium
Mechanisms
Management
Depression and Anxiety
Nausea and Vomiting
Mechanisms
Management
Chemotherapy-Induced Nausea and Vomiting
Nausea and Vomiting Associated with Advanced Malignancies
Non-pharmacologic Approaches
References
15: Rehabilitation Medicine
Introduction
Challenges to Rehabilitating Hematologic Malignancy Patients
Palliative Care and Cancer Rehabilitation: Treating a Common Patient Population
Advancing Cancer Rehabilitation
Conclusion
References
16: Psychosocial Considerations and Assessment of Patients with Hematological Malignancies and Serious Blood Disorders
Introduction
Approaching Assessment: Setting the Stage
Timing
Integration of Palliative Care
Primary and Consultative Psychosocial Collaboration
Stakeholders
Strengths-Based Approach
Key Areas of Assessment
Concrete/Material Resources
Behavioral Health/Safety
Caregivers and Family Systems
Identity
Spirituality and Meaning-Making
Assessment Models and Tools
Pediatric Population
Adult Population
Translating Assessment to Intervention
Assessment and the Patient–Provider–Primary Caregiver Relationship
Communication
Longitudinal Care
End-of-Life Care
Bereavement
Summary
References
17: Multicultural and Spiritual Considerations
Introduction
Overlap of Multicultural and Spiritual Care
Interdisciplinary Integrated Palliative Care for Hematologic Malignancies and Serious Blood Disorders
Spiritual and Cultural Screening and Assessment
Impact of Underlying Emotional/Spiritual Suffering on Care
Spiritual Care in Palliative Care
Case Studies
Conclusion
References
18: Ethical Considerations in Palliative Care
Introduction
Ethical Analysis
Ethics and Uncertainty
Ethical Considerations in Healthcare Decision-Making
Identifying the Appropriate Decision-Maker
Navigating Decisional Conflict
Ethical Considerations in Symptom Management
Disagreements about Symptom Management
Palliative Sedation
Ethical Considerations Regarding Withholding and Withdrawing/Discontinuing Treatment
Ethical Issues Related to Medical Aid in Dying (MAiD)
Ethical Considerations with Special Populations
Individuals with Physical/Intellectual Disabilities
Patients with Mental Illness
Incapacitated, Unrepresented Patients
Children
Pregnant Women
Prisoners
Moral Distress and Conscience-Based Objections in Palliative Care
Ethical Considerations in Palliative Care Research
References
19: Advancing the Field through Research
Introduction
Evolution of Palliative Care Research in Hematologic Oncology
Retrospective Cohort Studies
Qualitative and Mixed-Methods Studies
Survey Studies
Randomized Controlled Trials
Palliative Care Research Themes in Hematologic Oncology
Theme 1: Palliative Care Needs of Patients with Hematologic Malignancies
Theme 2: Palliative Care for Patients with Hematologic Malignancies
Theme 3: Barriers to Optimal Palliative Care
Disease-Based Barriers
Patient-Based Barriers
Clinician-Based Barriers
System-Based Barriers
Theme 4: Models of Palliative Care for Patients with Hematologic Malignancies
Future Directions
References
Part IV: The Intersection of Palliative Care and Hematologic Malignancies and Serious Blood Disorders: Special Populations
20: Palliative Care for Special Populations: Pediatrics
Models of Palliative Care Integration
Symptom Management
Communication
Decision-Making
Prognostic Uncertainty: Treatment Options for Relapsed or Refractory Hematologic Malignancies
Psychosocial Care for Children
Social Disparities
Nursing Considerations
Spiritual Care
End-of-Life Considerations
Bereavement
Self-Care in Pediatric Palliative Care
Conclusion
References
21: Palliative Care for Adolescents and Young Adults (AYAs)
Epidemiology of Hematologic Cancers and Serious Blood Disorders in AYAs
Challenges Facing AYAs with Hematologic Cancer and Serious Blood Disorders
Symptom Distress in AYAs with Hematologic Cancer and Serious Blood Disorders
Easing Suffering in AYAs with Hematologic Malignancies and Serious Blood Disorders
Summary
References
22: Caregivers of Patients with Hematologic Malignancies
Who Are the Caregivers and What Is their Role?
Effect of Delivering Care on the Caregivers
Psychological Impacts
Social Impacts
Physical Impacts
Benefits of Caregiving for the Caregiver
Unique Impact of Caregiving for Children
Assessing Self-Reported Outcomes in Caregivers
Supporting Caregivers of Patients with Hematologic Malignancies
Conclusions
References
Part V: The Intersection of Palliative Care and Hematologic Malignancies and Serious Blood Disorders: Caring for Patients at End of Life
23: End-of-Life Considerations
Introduction
Goals of Care and Treatment Plans
Prognostication
Planning for EOL
Conclusion of the Case
Location for EOL Care
Post-Mortem Options
Beyond the Medical Treatment Plan: Addressing Emotional Distress at EOL
Meaning-Centered Psychotherapy
Dignity Therapy
Therapeutic Life Review
Family Therapy
Legacy Work
Addressing Emotional Distress at EOL with Children
Spiritual Considerations in EOL Care
Desire for Spiritual Care
Outcomes from Spiritual Care
Barriers to Providing Spiritual Care
Necessity of Ritual within Spiritual Care
References
24: Care of the Imminently Dying Patient with a Hematologic Malignancy or Serious Blood Disorder
Introduction
Early Integration with Palliative Care
Advance Care Planning
End-of-Life Care
Intensive Care Unit (ICU)
Home Hospice
Symptom Management
Pain
Dyspnea
Pharmacological Treatments
Non-pharmacological Treatments
Delirium
Pharmacological Treatments
Non-pharmacological Treatments
Palliative Sedation
Spiritual Care
Communication
Discontinuation of Medical Technology
Discontinuation of Artificial Hydration and Nutrition
Impending Death and Anticipatory Guidance
Bereavement
References
25: Bereavement in Hematologic Malignancies and Serious Blood Disorders
Introduction
Background
Palliative Care Model
Integration of Palliative Care Principles Throughout the Disease Course
Disease Trajectory and Treatment
Adult-Specific Treatment Considerations
Adult-Specific Psychological Considerations
Pediatric-Specific Treatment Considerations
Pediatric-Specific Psychological Considerations
Consideration for Family Members before the patient’s Death
End-of-Life Care
Helping the Family Prepare for an Adult patient’s Death
Helping the Family Prepare for a Pediatric Patient’s Death
The Psychological Impact of Treatment on Bereavement
The Nature of Grief
A Cognitive Perspective
Acute Grief
The Wave-Like Pattern of Grief
Dual Process Model
Risk Factors for Poor Bereavement Outcomes
Diagnostic Formulations
Prolonged Grief Disorder
Bereavement Versus Depression
Caring for Bereaved Family Members
Preventive Model of Care
Cultural Considerations
Team Condolences and Bereavement Outreach
Psychological Strategies to Help the Bereaved
Major Approaches
Individual and Group Support
Bereavement Assessment
Support Groups
Strategies
Community-Based Bereavement Programs for Children and Adolescents
Conclusion
References
Index