Additional Information
Book Details
Abstract
Find out all you need to know about providing high-quality care to patients with serious illnesses from the 2nd edition of Palliative Care: Core Skills and Clinical Competencies. Drs. Linda L. Emanuel and S. Lawrence Librach, leaders in the field, address the clinical, physical, psychological, cultural, and spiritual dimensions that are integral to the care of the whole patient. They give you a broad understanding of the core clinical skills and competencies needed to effectively approach patient assessment, care of special populations, symptom control, ethical issues, and more. Clearly written in a user-friendly, high-yield format, this resource is your ultimate guidebook to the burgeoning practice of palliative medicine.
- Improve your pain management and symptom management skills with a better understanding of best practices in palliative care.
- Quickly review specific treatment protocols for both malignant and non-malignant illnesses, including HIV/AIDS, heart failure, renal failure, pulmonary disease, and neurodegenerative disease.
Better understand and manage the common and unique challenges associated with delivering palliative care in various social settings, such as the ICU, hospice, and the home; and to diverse populations, such as children, elders, and vulnerable members of society.
- Expand your knowledge of palliative care issues with new chapters on Veterans, Special Populations, Prognostication, Delirium, Working with Families, Wound Care, Home Care, and Dealing with Economic Hardship.
- Find the information you need quickly and easily with a templated, high-yield format.
Table of Contents
| Section Title | Page | Action | Price |
|---|---|---|---|
| Front cover | cover | ||
| Palliative Care | i | ||
| Copyright page | iv | ||
| Dedication | v | ||
| Contributors | vii | ||
| Foreword to the first edition | xix | ||
| The Roots of Hospice/Palliative Care | xix | ||
| The Legacy and the Challenge | xx | ||
| References | xxii | ||
| Preface | xxiii | ||
| Table of Contents | xxv | ||
| Section 1 Palliative Care: Core Skills | 1 | ||
| Part A General Foundations | 3 | ||
| CHAPTER 1 Palliative Care: | 4 | ||
| Definition of Palliative Care | 5 | ||
| Concepts of Quality of Life and Quality of Dying | 7 | ||
| Palliative Care as a Revolution | 8 | ||
| Challenges for the Practicing Clinician | 9 | ||
| Developing Competencies | 9 | ||
| Dealing with One’s Own Feelings and Outlook | 9 | ||
| Providing Palliative Care for All Life-Limiting Illnesses | 9 | ||
| When to Involve a Palliative Care Specialist | 9 | ||
| Maintaining the Interprofessional Nature of the Work | 10 | ||
| Challenges for the Health Care System | 10 | ||
| Integrating Palliative Care into the System | 10 | ||
| Developing Standards and Quality Improvement Processes | 10 | ||
| Providing Support for Formal Interdisciplinary Teams | 11 | ||
| Providing Support for Education at All Levels | 11 | ||
| Providing Support for Research | 12 | ||
| Integrating Palliative Care Throughout Health Care Services | 12 | ||
| Palliative Care and the Global Setting | 13 | ||
| Summary | 14 | ||
| References | 14 | ||
| CHAPTER 2 Comprehensive Assessment | 16 | ||
| Framework | 17 | ||
| The Unfolding Approach: Screening Queries Guide Evaluative Questions | 18 | ||
| Conducting the Comprehensive Assessment for the Patient | 19 | ||
| Needs in the Social Domain | 19 | ||
| Functional and Caregiving Needs | 19 | ||
| Isolation | 20 | ||
| Economic and Access Needs | 20 | ||
| Needs in the Existential Domain | 20 | ||
| Symptom Management Needs | 21 | ||
| Physical and Mental Symptoms | 21 | ||
| The Therapeutic Alliance | 21 | ||
| Goals of Care | 21 | ||
| Therapeutic Relationships | 21 | ||
| Probing Issues Raised on Screening | 22 | ||
| Content Areas for Family Caregiver Comprehensive Assessment | 23 | ||
| Proxy Perspectives about the Patient | 23 | ||
| Family Caregiver Assessment | 23 | ||
| Burden/Gratification of the Caregiving Role | 24 | ||
| Care Skills and Understanding Illness Information | 24 | ||
| Psychological Issues, Including Adaptation to Losses | 24 | ||
| Social Issues | 24 | ||
| Probing Issues Raised on Screening | 24 | ||
| Connecting the Assessment to an Interdisciplinary Team’s Care Plan | 25 | ||
| Patient and Family as Part of the Team | 25 | ||
| Confidentiality Issues | 25 | ||
| Ensuring Accessibility for the Patient and Family | 25 | ||
| Different Sources and How Information is Gathered and Recorded | 25 | ||
| Team Meetings | 25 | ||
| Continuously Adjusted Plans of Care | 26 | ||
| Special Issues | 26 | ||
| Difficult Families, Difficult Patients | 26 | ||
| Patients with Cognitive Impairment | 26 | ||
| Language and Cultural Barriers | 26 | ||
| Outcome Measures in Palliative Care | 26 | ||
| Information Technology in Comprehensive Assessment | 27 | ||
| Summary | 28 | ||
| References | 28 | ||
| CHAPTER 3 Communication Skills | 30 | ||
| Introduction: the Role of Communication in Palliative Care | 30 | ||
| Sources of Difficulty in Communication with Dying Patients | 31 | ||
| The Social Denial of Death | 32 | ||
| Lack of Experience of Death in the Family | 32 | ||
| High Expectations of Health and Life | 32 | ||
| Materialism | 33 | ||
| The Changing Role of Religion | 33 | ||
| Patients’ Fears of Dying | 33 | ||
| Factors that Originate in the Health Care Professional | 33 | ||
| Sympathetic Pain | 34 | ||
| Fear of Being Blamed | 34 | ||
| Fear of the Untaught | 35 | ||
| Fear of Eliciting a Reaction | 35 | ||
| Fear of Saying “I Don’t Know” | 35 | ||
| Fear of Expressing Emotions | 36 | ||
| Ambiguity of the Phrase “I’m Sorry” | 36 | ||
| Our Own Fears of Illness and Death | 36 | ||
| Fear of the Medical Hierarchy | 37 | ||
| Basic Communication Skills: The CLASS Protocol | 37 | ||
| C: Context (or Setting) | 37 | ||
| Spatial Arrangements | 38 | ||
| Body Language | 38 | ||
| Eye Contact | 39 | ||
| Touching the Patient | 39 | ||
| Commencing the Interview | 39 | ||
| L: Listening Skills | 39 | ||
| Open Questions | 39 | ||
| Silence | 40 | ||
| Evident Hearing | 40 | ||
| Clarifying | 40 | ||
| Handling Time and Interruptions | 40 | ||
| A: Acknowledgment (and Exploration) of Emotions | 41 | ||
| The Empathic Response | 41 | ||
| S: Management Strategy | 41 | ||
| S: Summary | 42 | ||
| Breaking Bad News: The SPIKES Protocol | 42 | ||
| S: Setting (Physical Context) | 42 | ||
| P: Perception (Finding out How Much the Patient Knows or Suspects) | 42 | ||
| Factual Content of the Patient’s Statements | 43 | ||
| Style of the Patient’s Statements | 43 | ||
| Emotional Content of the Patient’s Statements | 43 | ||
| I: Invitation (Finding out How Much the Patient Wants to Know) | 43 | ||
| K: Knowledge (Sharing Medical Information) | 44 | ||
| Aligning | 44 | ||
| Educating | 44 | ||
| Give Information in Small Amounts: The Warning Shot. | 45 | ||
| Use Plain Language. | 45 | ||
| Check Reception Frequently. | 45 | ||
| Reinforce. | 46 | ||
| Blend Your Agenda with that of the Patient. | 46 | ||
| Elicit the “Shopping List. ” | 46 | ||
| Listen for the Buried Question. | 46 | ||
| Be Prepared to Be Led. | 46 | ||
| E: Emotions and Empathic Responses (Responding to the Patient’s Feelings) | 46 | ||
| S: Strategy and Summary | 47 | ||
| Organizing and Planning | 47 | ||
| Demonstrate an Understanding of the Patient’s Problem List. | 47 | ||
| Indicate that You Can Distinguish the Fixable from the Unfixable. | 47 | ||
| Make a Plan or Strategy and Explain It. | 47 | ||
| Identify Coping Strategies of the Patient and Reinforce Them. | 48 | ||
| Identify Other Sources of Support for the Patient and Incorporate Them. | 48 | ||
| Summary and Conclusion. | 48 | ||
| Therapeutic (or Supportive) Dialogue | 48 | ||
| Assessment of the Patient’s Responses | 49 | ||
| Acceptability | 49 | ||
| Distinguishing the Adaptive from the Maladaptive | 49 | ||
| Distinguishing the “Fixable” from the “Unfixable” | 50 | ||
| Distinguishing Your Emotions from those of the Patient | 50 | ||
| Dealing with Conflict | 51 | ||
| Communication with Other People | 51 | ||
| Communication with Friends and Family | 51 | ||
| The Patient Has Primacy | 52 | ||
| The Family’s Feelings Have Validity | 52 | ||
| Communication between Physicians | 52 | ||
| Communication between Physicians and Nurses | 53 | ||
| Summary | 54 | ||
| Resources | 55 | ||
| References | 55 | ||
| CHAPTER 4 Negotiating Goals of Care: | 56 | ||
| Discussing Goals of Care | 58 | ||
| Six-Step Protocol | 59 | ||
| 1. Prepare and Establish an Appropriate Setting for the Discussion | 59 | ||
| 2. Ask the Patient and Family What They Understand | 61 | ||
| 3. Find Out What They Expect Will Happen | 61 | ||
| 4. Discuss Overall Goals and Specific Options | 61 | ||
| 5. Respond to Emotions | 62 | ||
| 6. Establish and Implement the Plan | 63 | ||
| Summary | 67 | ||
| Resources | 67 | ||
| References | 67 | ||
| CHAPTER 5 “Who Knows?” | 69 | ||
| 10 Steps to Improve Prognostication | 70 | ||
| 1. Start with An Anchor Point | 70 | ||
| 2. Assess Performance Status Changes | 72 | ||
| 3. Review Recent Biological and Laboratory Markers | 72 | ||
| 4. Utilize Palliative or End-Stage Prediction Tools | 73 | ||
| 5. Clinician Prediction of Survival: Would I Be Surprised? | 73 | ||
| 6. What Is Important to My Patient? To the family? | 74 | ||
| 7. Use Probabilistic Planning and Discussion to “Foretell” | 74 | ||
| 8. Recognize Limitations of Prognostication | 75 | ||
| 9. Review and Reassess Periodically | 76 | ||
| 10. Stay Connected | 76 | ||
| Summary | 78 | ||
| References | 78 | ||
| Part B Physical and Psychological Symptoms | 81 | ||
| CHAPTER 6 Multiple Symptoms and Multiple Illnesses | 82 | ||
| Illustrative Case Studies | 85 | ||
| Case Discussion | 86 | ||
| Case Discussion | 87 | ||
| Case Discussion | 88 | ||
| Case Discussion | 89 | ||
| Factors that Affect Morbidity and Suffering | 90 | ||
| Disease Factors | 90 | ||
| Multiple Physical Symptoms | 90 | ||
| Multiple Psychological and Spiritual Symptoms | 91 | ||
| Age | 91 | ||
| Multiple Drugs and Drug Interactions | 91 | ||
| Social Factors | 91 | ||
| Care System Issues | 91 | ||
| An Approach to Management | 91 | ||
| Do A Comprehensive Assessment; Look for All Potential Factors | 91 | ||
| Review Medications Frequently | 92 | ||
| Drugs Interactions | 92 | ||
| Accept Some Risk in Prescribing | 93 | ||
| Educate and Counsel About Goals of Care | 93 | ||
| Communicate with Others Involved in Care | 93 | ||
| Monitor Patients Frequently When Changing Therapies | 93 | ||
| Refer to Palliative Care Teams Early for Complex Cases | 93 | ||
| Advocate for Social Supports | 94 | ||
| Summary | 94 | ||
| References | 94 | ||
| CHAPTER 7 Pain | 95 | ||
| Pain Classification | 95 | ||
| Nociceptive Pain | 96 | ||
| Neuropathic Pain | 96 | ||
| Mixed Pain | 96 | ||
| Assessment of Pain | 96 | ||
| Physical Domain | 96 | ||
| Psychological Domain | 97 | ||
| Social Domain | 98 | ||
| Complicated Cancer Pain Assessment and Classification | 98 | ||
| Pain Assessment in the Cognitively Impaired | 98 | ||
| Principles of Pain Management | 99 | ||
| Educate the Patient and Family | 99 | ||
| Prevent and Minimize Adverse Effects | 99 | ||
| Match Pain Severity to Analgesic Potency | 99 | ||
| Titrate to Pain Control | 99 | ||
| Prescribe Around-the-Clock Dosing | 100 | ||
| Prescribe Rescue or breaKthrough Doses | 100 | ||
| Always Consider Using Adjuvants | 100 | ||
| Monitor Continuously | 100 | ||
| Ask For Help | 100 | ||
| Addiction, Diversion, Physical Dependence, and Tolerance | 100 | ||
| Pharmacologic Options for Pain Management | 102 | ||
| Nonopioid Analgesics | 102 | ||
| Acetaminophen | 102 | ||
| Nonsteroidal Anti-Inflammatory Drugs | 102 | ||
| Tramadol | 102 | ||
| Opioids | 103 | ||
| General Properties | 103 | ||
| Common Adverse Effects | 104 | ||
| Less Common Adverse Effects | 104 | ||
| Rare Adverse Effects | 105 | ||
| Special Issues | 105 | ||
| Practical Tips | 106 | ||
| Opioid Rotation | 107 | ||
| Methadone | 107 | ||
| Adjuvant Analgesics | 108 | ||
| Corticosteroids | 108 | ||
| Tricyclic Antidepressants | 109 | ||
| Other Antidepressants: Selective Serotonin Reuptake Inhibitors and Serotonin-Norepinephrine Reuptake Inhibitors | 109 | ||
| Anticonvulsant Drugs | 109 | ||
| Bisphosphonates | 110 | ||
| Cannabinoids | 110 | ||
| Muscle Relaxants | 110 | ||
| Anesthetics | 110 | ||
| Nonpharmacologic Options for Pain Management | 111 | ||
| Radiation Therapy | 111 | ||
| Relaxation Therapy | 111 | ||
| Physical and Occupational Therapy | 111 | ||
| Transcutaneous Electrical Nerve Stimulation | 111 | ||
| Acupuncture | 111 | ||
| Interventional Methods for Pain Management | 111 | ||
| Summary | 112 | ||
| Resources | 113 | ||
| Internet Resources | 113 | ||
| Print Resources | 113 | ||
| Guidelines | 113 | ||
| References | 113 | ||
| CHAPTER 8 Nausea and Vomiting | 115 | ||
| Definitions | 116 | ||
| Pathophysiology | 116 | ||
| Vomiting Center | 116 | ||
| Chemoreceptor Trigger Zone | 116 | ||
| Cerebral Cortex | 117 | ||
| Vestibular System | 117 | ||
| Gastrointestinal Tract | 117 | ||
| Neurotransmitters and Receptors | 117 | ||
| Etiology | 119 | ||
| Drug-Induced Nausea and Vomiting | 119 | ||
| Anticipatory Nausea and Vomiting | 119 | ||
| Chemotherapy-Induced Nausea and Vomiting | 119 | ||
| Central Nervous System Disorders | 119 | ||
| Gastrointestinal Problems | 120 | ||
| Assessment | 120 | ||
| Patient Risk Factors | 122 | ||
| Treatment | 122 | ||
| Preventive Management | 122 | ||
| Pharmacologic Management | 123 | ||
| Nonpharmacologic Management | 126 | ||
| Summary | 127 | ||
| Resources | 127 | ||
| References | 127 | ||
| CHAPTER 9 Part A: Cachexia | 129 | ||
| Pathophysiology | 130 | ||
| Assessment | 131 | ||
| Management | 132 | ||
| Future Directions | 134 | ||
| Summary | 134 | ||
| Resources | 135 | ||
| References | 135 | ||
| Part B: Fatigue | 137 | ||
| Assessment | 138 | ||
| Definition | 138 | ||
| Measurement | 139 | ||
| Pathophysiology | 139 | ||
| Management | 141 | ||
| Treatment of Comorbid Conditions and Concurrent Syndromes | 141 | ||
| Psychosocial Interventions | 141 | ||
| Exercise Interventions | 141 | ||
| Drug Interventions | 142 | ||
| Summary | 142 | ||
| Resources | 142 | ||
| References | 143 | ||
| CHAPTER 10 Depression and Anxiety | 145 | ||
| Depression | 147 | ||
| Diagnosis | 148 | ||
| Screening Tools | 150 | ||
| Prevalence | 150 | ||
| Risk Factors | 150 | ||
| Management | 151 | ||
| Pharmacologic Treatment | 151 | ||
| Psychosocial Treatments | 154 | ||
| Psychotherapy | 154 | ||
| Suicide | 155 | ||
| Anxiety | 156 | ||
| Treatment Overview | 157 | ||
| Psychotherapeutic Approaches | 157 | ||
| Medications | 159 | ||
| Depression | 160 | ||
| Anxiety | 160 | ||
| Summary | 161 | ||
| Resources | 161 | ||
| References | 161 | ||
| CHAPTER 11 Delirium | 162 | ||
| Diagnosis and Assessment | 163 | ||
| Risk Factors | 164 | ||
| Etiology | 164 | ||
| Management | 164 | ||
| Behavioral Management | 164 | ||
| Medication Management | 165 | ||
| Summary | 167 | ||
| Resources | 167 | ||
| References | 167 | ||
| CHAPTER 12 Constipation | 168 | ||
| Definition | 168 | ||
| Etiology | 169 | ||
| Assessment | 170 | ||
| Management | 171 | ||
| General Management Issues | 171 | ||
| Nonpharmacologic Measures | 171 | ||
| Laxatives | 172 | ||
| Peripheral Opioid Receptor Antagonists | 173 | ||
| Enemas | 173 | ||
| Manual Disimpaction | 174 | ||
| The Paraplegic Patient | 174 | ||
| Summary | 174 | ||
| References | 175 | ||
| CHAPTER 13 Urinary Incontinence | 176 | ||
| Physiology and Pathophysiology | 177 | ||
| Types of Urinary Incontinence | 178 | ||
| Overactive Bladder Syndrome | 178 | ||
| Other Forms of Urgency Incontinence | 178 | ||
| Stress Incontinence | 178 | ||
| Overflow Incontinence | 178 | ||
| Incontinence Secondary to Neurologic Dysfunction | 178 | ||
| Incontinence Associated with Cognitive Failure | 179 | ||
| Assessment | 179 | ||
| Management | 180 | ||
| Behavioral Therapy | 180 | ||
| Pharmacologic Therapy | 180 | ||
| Overactive Bladder | 180 | ||
| Stress Incontinence | 181 | ||
| Overflow Incontinence | 182 | ||
| Use of Diapers | 182 | ||
| Skin Care | 182 | ||
| Urinary Urethral Catheters | 182 | ||
| Summary | 184 | ||
| References | 184 | ||
| CHAPTER 14 Sexuality | 186 | ||
| Definition | 187 | ||
| Sexuality and Palliative Care | 188 | ||
| Patient and Family Issues | 188 | ||
| Aging Patients | 188 | ||
| Health Care Provider Issues | 189 | ||
| System Issues | 190 | ||
| Assessment | 190 | ||
| Counseling | 191 | ||
| Surgical Techniques | 191 | ||
| Other Interventions | 191 | ||
| Treatments for Male Impotence | 191 | ||
| Female Sexual Dysfunction | 193 | ||
| Environmental Changes | 193 | ||
| Summary | 194 | ||
| Resources | 194 | ||
| References | 194 | ||
| CHAPTER 15 Dyspnea | 196 | ||
| Definition | 196 | ||
| Prevalence and Impact | 196 | ||
| Pathophysiology | 198 | ||
| Increased Ventilatory Demand | 198 | ||
| Impaired Ventilation | 198 | ||
| Special End-of-Life Considerations | 198 | ||
| Multidimensional Assessment | 200 | ||
| Patient Reports | 200 | ||
| Qualitative Aspects of Dyspnea | 201 | ||
| Clinical Assessment | 201 | ||
| Management | 203 | ||
| Nonpharmacologic Interventions | 204 | ||
| Patient and Family Education | 208 | ||
| Complementary Treatment | 208 | ||
| Oxygen | 208 | ||
| Noninvasive Ventilation | 208 | ||
| Pharmacologic Interventions | 209 | ||
| Opioids | 209 | ||
| Anxiolytics and Phenothiazines | 209 | ||
| Other Medications | 210 | ||
| End-Stage Management | 210 | ||
| Withdrawal from Ventilation | 210 | ||
| Severe Escalating Dyspnea | 210 | ||
| Summary | 211 | ||
| Resources | 211 | ||
| References | 211 | ||
| CHAPTER 16 Supporting the Family in Palliative Care | 213 | ||
| Caring for the Family: The Psychosocial Dimension of Care | 213 | ||
| Family Factors to Consider in Assessment | 214 | ||
| Structure of the Family: Roles Assumed by its Members | 214 | ||
| History of Loss Related to Illness (Current and Other Family Members) | 214 | ||
| Coping Strengths and Challenges | 214 | ||
| Values and Belief Systems | 215 | ||
| Information Needs | 215 | ||
| Strategies to Optimize Communication and Collaboration | 216 | ||
| Acknowledging Emotions | 216 | ||
| Handling Language Differences | 217 | ||
| Using Family Conferences | 217 | ||
| Potential Sources of Conflict | 219 | ||
| Discordant Communication Style | 219 | ||
| Difference in Meaning and Reasoning about What is Happening and What to Do about It | 219 | ||
| Summary | 220 | ||
| References | 221 | ||
| CHAPTER 17 Local Wound Care for Palliative and Malignant Wounds | 223 | ||
| Palliative Wounds | 223 | ||
| Malignant Wounds | 225 | ||
| Management of Malignant and Other Wounds | 226 | ||
| Hopes | 226 | ||
| Treatment Approach | 226 | ||
| Prevention | 226 | ||
| Antitumor Therapies | 227 | ||
| Patient-Centered Concerns with Malignant Wounds | 227 | ||
| Local Wound Care Issues (Hopes) | 227 | ||
| H: Hemorrhage or Bleeding | 227 | ||
| O: Odor | 228 | ||
| P: Pain | 228 | ||
| E: Exudate | 231 | ||
| S: Superficial Infection | 232 | ||
| Diagnosis of Wound Infection | 232 | ||
| Treatment of Wound Infection | 232 | ||
| Summary | 235 | ||
| Resources | 238 | ||
| References | 238 | ||
| Part C Personal Contexts | 241 | ||
| CHAPTER 18 Loss, Bereavement, and Adaptation | 242 | ||
| Brief Overview of Adaptive Processes | 242 | ||
| Losses for the Dying Person | 244 | ||
| Comprehension | 244 | ||
| Creative Adaptation | 246 | ||
| Reintegration | 248 | ||
| Journey through the Processes | 248 | ||
| Growth and Development Near the End of Life | 249 | ||
| Factors that Influence Adjustment | 250 | ||
| Losses for the Bereaved Survivor | 251 | ||
| Interventions for the Bereaved | 252 | ||
| Grief and Clinical Depression | 252 | ||
| Summary | 253 | ||
| Resources | 254 | ||
| References | 254 | ||
| CHAPTER 19 Understanding and Respecting Cultural Differences | 255 | ||
| Background and Significance | 255 | ||
| Sociocultural Development of Palliative Care | 256 | ||
| Elements That Can Limit Cultural Understanding | 257 | ||
| Marginalizing Ethnographic and Psychosocial Information | 257 | ||
| Secular Focus | 259 | ||
| Focus on Individual Autonomy | 260 | ||
| Truth Telling, Negative Focus | 260 | ||
| Different Definitions of Death | 261 | ||
| Communication and Context | 262 | ||
| Hispanic Perspectives | 262 | ||
| Background | 262 | ||
| Cultural Features | 263 | ||
| Religion | 263 | ||
| Lack of Focus on Individual Patient Perspectives and Large Number of Visitors | 264 | ||
| Discomfort with Constant Staff Changes | 264 | ||
| Reluctance to Partner with Physicians for Planning and Unrealistic Expectations | 265 | ||
| Focusing on the Present and Avoiding Long-Term Plans | 265 | ||
| Avoiding End-of-Life Decisions | 265 | ||
| Truth Telling and Advanced Medical Planning | 265 | ||
| Life-Prolonging Treatments | 265 | ||
| Palliative Care Perspectives | 265 | ||
| How Could the Carillero Family be Better Respected? | 265 | ||
| Cross-Cultural Awareness in Practice | 266 | ||
| Summary | 267 | ||
| Resources | 268 | ||
| References | 268 | ||
| Part D Specific Situations and Skill Sets | 269 | ||
| CHAPTER 20 Advance Care Planning | 270 | ||
| Overview | 270 | ||
| Definitions | 271 | ||
| History and Critique | 272 | ||
| Advance Care Planning in Palliative Care | 274 | ||
| Which Patients? | 274 | ||
| Can Cognitively Impaired Patients Participate? | 274 | ||
| How Is Decisional Capacity Assessed? | 274 | ||
| When Should Conversations Occur? | 275 | ||
| Who Should Initiate the Conversation? | 276 | ||
| What Communication Strategies Are Most Helpful? | 276 | ||
| How Should the Topic be Introduced? | 277 | ||
| What Topics Should be Addressed? | 278 | ||
| What If Patients and Families are Reluctant to Discuss These Issues? | 280 | ||
| Summary | 282 | ||
| Resources | 282 | ||
| References | 282 | ||
| CHAPTER 21 Responding to Requests for Euthanasia and Physician-Assisted Suicide | 284 | ||
| Philosophy and Goals of Palliative Care | 286 | ||
| Language, Rhetoric, and Definitions | 287 | ||
| Arguments for and against Euthanasia and Physician-Assisted Suicide | 288 | ||
| For | 288 | ||
| Against | 289 | ||
| Regulation and the “Slippery Slope” | 290 | ||
| Understanding Requests for Assisted Death: From Argument to Experience | 291 | ||
| Effect on Physicians and Other Health Care Practitioners | 293 | ||
| Is There a Role for Euthanasia or Physician-Assisted Suicide in Palliative Care? | 294 | ||
| Individual Response | 295 | ||
| Palliative Care’s Response | 296 | ||
| Summary | 297 | ||
| Resources | 297 | ||
| References | 298 | ||
| CHAPTER 22 Withholding and Withdrawing Life-Sustaining Therapies | 300 | ||
| Epidemiology of Withholding and Withdrawing Life-Sustaining Therapy | 301 | ||
| Ethical Consensus Regarding Withholding and Withdrawing Therapies | 301 | ||
| Legal Consensus Regarding Withholding and Withdrawing Therapies | 303 | ||
| Legal Consensus in the United States | 303 | ||
| Who Should Make Decisions about Life-Sustaining Therapies for Incapable Patients? | 304 | ||
| The Evidence Surrogates Should Use to Guide their Decision Making | 304 | ||
| Laws on Withholding and Withdrawing Therapies in Other Countries | 305 | ||
| Discussing Withholding and Withdrawing Therapies with Patients and Families | 305 | ||
| Step 1: Establish the Setting for the Discussion | 305 | ||
| Step 2: Review the Patient’s Current Situation | 307 | ||
| Step 3: Review Overall Goals of Care | 307 | ||
| Step 4: Discuss Recommendations for Withholding or Withdrawing Therapy | 308 | ||
| Step 5: Respond to Patient or Surrogate Reaction | 308 | ||
| Step 6: Summarize and Establish Follow-Up | 309 | ||
| Considerations for Withholding and Withdrawing Specific Therapies | 309 | ||
| Artificial Nutrition and Hydration | 309 | ||
| Artificial Nutrition | 309 | ||
| Artificial Hydration | 310 | ||
| Mechanical Ventilation | 311 | ||
| Methods of Ventilator Withdrawal | 311 | ||
| Noninvasive Positive Pressure Ventilation | 312 | ||
| Palliation of Dyspnea and Respiratory Distress | 313 | ||
| Family Education and Support | 313 | ||
| Cardiopulmonary Resuscitation | 314 | ||
| Dialysis | 315 | ||
| Summary | 316 | ||
| Resources | 317 | ||
| References | 317 | ||
| CHAPTER 23 Last Hours of Living | 319 | ||
| Prepare the Patient and Family | 320 | ||
| Conduct a Family Meeting | 320 | ||
| Develop an Effective Care Team | 321 | ||
| Discuss Communicating with the Dying Patient | 323 | ||
| Facilitate Life Closure | 324 | ||
| Rites and Rituals, Funerals, and Memorial Services | 325 | ||
| Provide Ongoing Support | 325 | ||
| Dying in Institutions | 325 | ||
| Manage the Dying Process | 325 | ||
| Weakness and Fatigue | 326 | ||
| Skin Care | 326 | ||
| Wound Care | 327 | ||
| Decreased Nutritional Intake and Wasting | 327 | ||
| Loss of Ability to Close Eyes | 328 | ||
| Decreased Fluid Intake and Dehydration | 328 | ||
| When Fluid Intake Is Reduced. | 328 | ||
| When the Patient Stops Taking Fluids. | 328 | ||
| Oral, Nasal, and Conjunctival Care | 329 | ||
| Cardiac Dysfunction and Renal Failure | 329 | ||
| Neurologic Dysfunction: the two Roads to Death | 329 | ||
| The Usual Road | 329 | ||
| Eyelash Reflex. | 330 | ||
| Pain. | 330 | ||
| Respiratory Dysfunction. | 331 | ||
| Difficulty Swallowing. | 332 | ||
| Medications. | 332 | ||
| Loss of Sphincter Control. | 333 | ||
| The “Difficult Road” | 333 | ||
| Terminal Hyperactive Delirium. | 333 | ||
| Seizures. | 335 | ||
| Other Symptoms and End-of-Life Issues | 335 | ||
| Hemorrhage. | 335 | ||
| Fever. | 336 | ||
| Turning Off Defibrillators. | 336 | ||
| When Death Occurs | 337 | ||
| Rites and Rituals | 337 | ||
| Pronouncing and Certifying Death | 337 | ||
| Notifying the Coroner | 338 | ||
| Notifying Family | 338 | ||
| Preparing the Body for Viewing | 338 | ||
| Inviting Others to Bedside | 339 | ||
| Moving the Body | 339 | ||
| After the Body Has Been Moved | 340 | ||
| Follow-Up | 340 | ||
| Attendance at Funerals and Memorial Services | 340 | ||
| Summary | 341 | ||
| References | 341 | ||
| CHAPTER 24 Legal and Ethical Issues in the United States | 343 | ||
| Ethics, Law, and End-of-life Care | 343 | ||
| Informed Consent | 344 | ||
| Limitation of Treatment | 345 | ||
| Decision Making for the Incapacitated | 345 | ||
| Determination of Decision-Making Capacity | 346 | ||
| Advance Directives | 346 | ||
| Guardianship and Surrogates | 347 | ||
| Refusal of Orally Ingested Nutrition and Hydration | 347 | ||
| Opioids in End-of-life Care | 348 | ||
| Physician-Assisted Suicide | 348 | ||
| Futility | 349 | ||
| Palliative Sedation | 349 | ||
| Summary | 350 | ||
| References | 351 | ||
| Cases and Statutes | 352 | ||
| Section 2 Specific Types of Illness and Sites of Care | 353 | ||
| CHAPTER 25 Hematology/Oncology | 354 | ||
| Approach to Brain Metastases | 354 | ||
| Incidence | 354 | ||
| Presentation | 355 | ||
| Evaluation | 355 | ||
| Management | 355 | ||
| Medical | 355 | ||
| Interventional | 356 | ||
| Approach to Liver Metastases | 356 | ||
| Presentation | 356 | ||
| Evaluation | 357 | ||
| Management | 357 | ||
| Medical | 357 | ||
| Interventional | 358 | ||
| Approach to Bone Metastases | 358 | ||
| Presentation | 358 | ||
| Evaluation | 358 | ||
| Management | 360 | ||
| Medical | 360 | ||
| Radiation | 360 | ||
| Surgery | 361 | ||
| Approach to Bowel Obstruction | 362 | ||
| Presentation | 362 | ||
| Evaluation | 362 | ||
| Management | 363 | ||
| Medical | 363 | ||
| Interventional | 364 | ||
| Approach to Malignant Effusions | 364 | ||
| Pleural Effusions | 364 | ||
| Presentation | 364 | ||
| Evaluation | 365 | ||
| Management | 365 | ||
| Medical. | 365 | ||
| Drainage. | 366 | ||
| Interventional. | 366 | ||
| Ascites | 367 | ||
| Presentation | 367 | ||
| Evaluation | 367 | ||
| Management | 368 | ||
| Medical. | 368 | ||
| Drainage. | 368 | ||
| Pericardial Effusions | 369 | ||
| Presentation | 369 | ||
| Evaluation | 369 | ||
| Management | 369 | ||
| Medical. | 369 | ||
| Drainage. | 369 | ||
| Summary | 370 | ||
| Resources | 370 | ||
| References | 370 | ||
| CHAPTER 26 HIV/AIDS | 372 | ||
| Epidemiology | 372 | ||
| Palliative Approach across the Continuum | 373 | ||
| Unique Family Unit | 374 | ||
| Teamwork | 375 | ||
| Advance Care Planning | 375 | ||
| Prognosis-Adjusted Management Issues | 375 | ||
| Impact of Symptoms | 377 | ||
| Side Effects of Antiretroviral Therapy | 379 | ||
| Symptoms to Target | 380 | ||
| Pain | 381 | ||
| Depression | 381 | ||
| Loss of Viral Control and Threats to Survival | 382 | ||
| Co-Morbidities and Long-Term Toxicities | 383 | ||
| Life Expectancy and Changing Causes of Death | 383 | ||
| Recognition of Clinical Decline | 384 | ||
| Causes of Death | 385 | ||
| End-of-Life Issues | 385 | ||
| Stopping Critical Medications | 385 | ||
| Life Closure | 385 | ||
| Time of Death | 386 | ||
| Self-Care of Providers | 386 | ||
| Cultural Issues and Ritual | 387 | ||
| Summary | 388 | ||
| Impact of International Epidemic on United States | 389 | ||
| Resources | 389 | ||
| References | 389 | ||
| CHAPTER 27 Heart Failure and Palliative Care | 391 | ||
| How is Heart Failure Different from Cancer? | 392 | ||
| Epidemiology and Mortality | 393 | ||
| Guidelines | 394 | ||
| Symptoms | 395 | ||
| Treatment | 396 | ||
| Standard Treatment for Heart Failure | 396 | ||
| Symptomatic Treatment | 397 | ||
| Dyspnea | 397 | ||
| Pain | 398 | ||
| Depression | 399 | ||
| Resuscitation and Automated Implantable Defibrillators (AICDs) | 399 | ||
| Prognosis | 400 | ||
| Hospice Criteria for Heart Failure | 401 | ||
| Disease Management Programs | 402 | ||
| Conclusion: The Transition | 402 | ||
| References | 403 | ||
| CHAPTER 28 Kidney Failure | 405 | ||
| Relevance of Palliative Care | 405 | ||
| Symptom Management | 406 | ||
| Pain Management | 406 | ||
| Other Symptom Management | 409 | ||
| Care Planning | 410 | ||
| Advance Care Planning | 410 | ||
| Cardiopulmonary Resuscitation | 411 | ||
| Dialysis Decision Making | 411 | ||
| Summary | 419 | ||
| Resources | 419 | ||
| References | 420 | ||
| CHAPTER 29 Gastrointestinal Malignancies | 421 | ||
| Gastric Cancer | 422 | ||
| Background | 422 | ||
| Role of Chemotherapy | 422 | ||
| Common Palliative Care Issues | 422 | ||
| Neuroendocrine Tumors | 423 | ||
| Background | 423 | ||
| Role of Chemotherapy | 424 | ||
| Common Palliative Care Issues | 424 | ||
| Hepatocellular Carcinoma | 425 | ||
| Background | 425 | ||
| Role of Chemotherapy | 425 | ||
| Common Palliative Care Issues | 425 | ||
| Pancreatic Cancer | 427 | ||
| Background | 427 | ||
| Role of Chemotherapy | 427 | ||
| Common Palliative Care Issues | 427 | ||
| Colon Cancer | 428 | ||
| Background | 428 | ||
| Role of Chemotherapy | 428 | ||
| Common Palliative Care Issues | 429 | ||
| Esophageal Cancer | 431 | ||
| Background | 431 | ||
| Role of Chemotherapy | 431 | ||
| Common Palliative Care Issues | 431 | ||
| Summary | 432 | ||
| Resources | 432 | ||
| References | 433 | ||
| CHAPTER 30 Neurodegenerative Diseases | 435 | ||
| Common Elements of Care | 435 | ||
| Advance Directives/Goals of Care | 437 | ||
| Key Decisions | 437 | ||
| Nutritional Support | 437 | ||
| Respiratory Support | 437 | ||
| Interprofessional Care and Collaboration | 438 | ||
| Role of Palliative Care | 438 | ||
| Symptom Management | 438 | ||
| Sialorrhea | 439 | ||
| Spasticity and Cramps | 439 | ||
| Motor Complications in Parkinson’s Disease | 440 | ||
| Nonmotor Complications in Parkinson’s Disease | 441 | ||
| Autonomic Dysfunction. | 441 | ||
| Postural Hypotension. | 441 | ||
| Pain | 441 | ||
| Breathlessness | 442 | ||
| Constipation | 443 | ||
| Dysphagia | 443 | ||
| Insomnia | 443 | ||
| Fatigue | 444 | ||
| Impaired Communication | 444 | ||
| Cognitive Impairment | 445 | ||
| Pseudobulbar Affect | 446 | ||
| Psychosocial Symptoms | 446 | ||
| Mood Disorders and Hope | 446 | ||
| Desire for Hastened Death | 447 | ||
| Physician-Assisted Suicide | 448 | ||
| End-of-Life Care | 448 | ||
| Summary | 449 | ||
| Resources | 449 | ||
| References | 450 | ||
| CHAPTER 31 Principles of Palliative Surgery | 451 | ||
| Palliative Philosophy, History, and Definitions | 451 | ||
| Goals of Palliative Surgery | 454 | ||
| Palliative Surgery by All Surgeons | 455 | ||
| Cancer and Palliative Surgery | 456 | ||
| Procedure Selection and Patient Assessment | 456 | ||
| Complications and Outcomes Measures | 457 | ||
| Special Topics | 458 | ||
| Do not Resuscitate Orders in the Operating Room | 458 | ||
| Advanced Care Planning | 459 | ||
| Futility | 459 | ||
| Responding to Perioperative Suffering | 460 | ||
| The Role of Research | 461 | ||
| Summary | 462 | ||
| Resources | 462 | ||
| References | 462 | ||
| CHAPTER 32 Dementia | 464 | ||
| Dementia | 464 | ||
| Prognosis | 464 | ||
| Pharmacologic Management | 465 | ||
| Pain Assessment | 467 | ||
| Decision Making | 468 | ||
| Caregiving | 469 | ||
| Resources | 470 | ||
| References | 470 | ||
| CHAPTER 33 Pulmonary Palliative Medicine | 471 | ||
| Pathophysiology of Dyspnea | 471 | ||
| Primary Disease Management | 473 | ||
| Bronchodilators | 473 | ||
| Corticosteroids | 475 | ||
| Oxygen | 476 | ||
| Other Modes of Primary Disease Management | 476 | ||
| Symptom Management | 477 | ||
| Opiates | 477 | ||
| Benzodiazepines | 477 | ||
| End-of-Life Care | 478 | ||
| Summary | 479 | ||
| Resources | 479 | ||
| References | 480 | ||
| CHAPTER 34 Pediatric Palliative Care | 482 | ||
| The Who, How, What, When, and Where of Pediatric Palliative Care | 482 | ||
| Communication with Children and Families | 485 | ||
| Symptom Management | 487 | ||
| Summary | 491 | ||
| Resources | 491 | ||
| References | 492 | ||
| CHAPTER 35 Palliative Care in the Intensive Care Unit | 493 | ||
| Negotiating Goals of Care | 495 | ||
| Moving to a Palliative Treatment Plan | 498 | ||
| Decision Making with Critically Ill Patients | 498 | ||
| Decision Making with Surrogates | 500 | ||
| Pain and Symptom Management | 503 | ||
| Withholding and Withdrawing Life-Sustaining Interventions | 505 | ||
| How to Withdraw a Ventilator | 506 | ||
| The Last Hours | 508 | ||
| Caring for the Family | 508 | ||
| Summary | 510 | ||
| Resources | 510 | ||
| References | 511 | ||
| Further Reading | 512 | ||
| CHAPTER 36 Emergency Medicine and Palliative Care | 513 | ||
| Understanding the Emergency Department Model | 513 | ||
| Perspectives for Non–Emergency Department Providers | 513 | ||
| Triage | 513 | ||
| Environmental and Systems Barriers | 514 | ||
| How to Assist Emergency Personnel | 514 | ||
| Perspectives for Emergency Medicine Clinicians | 515 | ||
| Bedside Rapid Trust Building | 515 | ||
| Revealing the True Effectiveness of Cardiopulmonary Resuscitation | 516 | ||
| Core Palliative Care Skills in the Emergency Setting | 516 | ||
| “Big Picture” Prognostication | 516 | ||
| Sentinel Emergency Department Presentations That Indicate the Onset of Active Dying | 517 | ||
| Noninvasive Management of Severe Respiratory Failure | 518 | ||
| Rapid Management of Severe Pain | 518 | ||
| Family-Witnessed Resuscitation | 520 | ||
| Death Disclosure | 521 | ||
| Special Issues | 522 | ||
| Patients Receiving Hospice Care | 522 | ||
| Loss of Support Devices | 522 | ||
| Enteral Feeding Devices | 523 | ||
| Airway/Tracheotomy Support Devices | 524 | ||
| Summary | 525 | ||
| Resources | 526 | ||
| References | 526 | ||
| Further Reading | 526 | ||
| CHAPTER 37 Veterans, Veterans Administration Health Care, and Palliative Care | 527 | ||
| Structure of the Department of Veterans Affairs | 528 | ||
| Impact of Veterans’ Experiences on Response to Suffering at Life’s End | 529 | ||
| Different Cohorts of Veterans | 530 | ||
| World War II | 530 | ||
| Korean Conflict | 531 | ||
| Vietnam War | 531 | ||
| The Newest Veterans | 532 | ||
| Specific Issues with Veterans and Palliative Care | 532 | ||
| Posttraumatic Stress Disorder | 532 | ||
| Military Sexual Trauma | 534 | ||
| Triggers for Manifestations of MST in Palliative Care Settings | 535 | ||
| Summary | 536 | ||
| References | 536 | ||
| Section 3 Service Delivery | 539 | ||
| CHAPTER 38 The Interdisciplinary Team | 540 | ||
| Interdisciplinary Teams in Palliative Care | 541 | ||
| Criteria for Effective Team Functioning | 542 | ||
| Threats to Team Functioning | 543 | ||
| Instability of Team Membership | 543 | ||
| Role Conflict | 543 | ||
| Role Overload and Burnout | 545 | ||
| Building and Strengthening Teams | 546 | ||
| Careful Selection of Team Members | 547 | ||
| Interdisciplinary Education | 547 | ||
| Team Training | 547 | ||
| Communication | 548 | ||
| Institutional Support | 549 | ||
| Summary | 550 | ||
| Resources | 550 | ||
| References | 550 | ||
| Further Reading | 551 | ||
| CHAPTER 39 Palliative Care Nursing | 552 | ||
| Nursing Contributions | 553 | ||
| Defining a Specialty | 554 | ||
| Scope | 554 | ||
| Standards | 554 | ||
| Types of Care Activity | 555 | ||
| Standard I: Assessment—The Hospice and Palliative Nurse Collects Patient and Family Health Data | 555 | ||
| Standard II: Diagnosis—The Hospice and Palliative Nurse Analyzes the Assessment Data in Determining Diagnosis | 556 | ||
| Standard III: Outcome Identification—The Hospice and Palliative Nurse Develops Expected Outcomes | 556 | ||
| Standard IV: Planning—The Hospice and Palliative Nurse Develops a Plan of Care that Prescribes Interventions to Attain Expected Outcomes | 556 | ||
| Standard V: Implementation—The Hospice and Palliative Nurse Implements the Interventions Identified in the Plan of Care | 556 | ||
| Standard VI: Evaluation—The Hospice and Palliative Nurse Evaluates the Patient and Family’s Progress toward Attainment of Outcomes | 557 | ||
| Patient Education | 557 | ||
| Effective Communication | 557 | ||
| Spiritual Dimensions | 558 | ||
| Presence and Support | 558 | ||
| Ethical Issues | 559 | ||
| Professional Boundaries | 559 | ||
| Withholding/Withdrawing Therapy | 559 | ||
| Palliative Sedation | 560 | ||
| Individual Competency | 560 | ||
| Self-Care | 561 | ||
| Nurses Integrating Care | 561 | ||
| The Approach | 562 | ||
| Establish What They Know | 563 | ||
| Determine the Legal Proxy | 563 | ||
| Determine the Patient’s Prognosis | 563 | ||
| Identify Goals of Care and Patient Priorities | 563 | ||
| Assess Pain and Other Symptoms | 564 | ||
| Assess Emotional Issues | 564 | ||
| Make Referrals | 564 | ||
| Facilitate Grieving | 564 | ||
| Foster Quality of Life | 565 | ||
| Facilitate a “Good Death” | 565 | ||
| Professional Associations | 565 | ||
| Specialty Certification for the Nursing Team | 566 | ||
| Future Trends | 566 | ||
| Palliative Care Specialists | 566 | ||
| Advanced Practice Palliative Nurses | 566 | ||
| Palliative Education | 567 | ||
| Nursing Research | 567 | ||
| Summary | 568 | ||
| Resources | 568 | ||
| References | 568 | ||
| CHAPTER 40 Social Work Practice in Palliative Care: | 570 | ||
| Definition of Social Work | 571 | ||
| Psychosocial Context of Palliative Care | 572 | ||
| Credentialing | 574 | ||
| Social Work Values in Palliative Care | 575 | ||
| Social Work Competencies in Palliative Care | 575 | ||
| Emerging Role of Palliative Care Social Work | 577 | ||
| Social Work in Action: Maximizing Quality of Life | 578 | ||
| Prospective Identification of Barriers to Quality of Life through Biopsychosocial Screening | 578 | ||
| Physical Quality of Life: Education, Advocacy, and Skills | 579 | ||
| Practical Quality of Life | 580 | ||
| Psychological Quality of Life | 580 | ||
| Social Quality of Life | 580 | ||
| Spiritual Quality of Life | 580 | ||
| Summary | 581 | ||
| Resources | 582 | ||
| References | 582 | ||
| CHAPTER 41 Spiritual Care | 584 | ||
| Common Fears | 585 | ||
| Purpose of Spiritual Care | 586 | ||
| Definitions | 586 | ||
| Methods of Spiritual Care: The Role of the Chaplain | 586 | ||
| Presence | 587 | ||
| Tradition and Community | 587 | ||
| Reflection | 587 | ||
| Paths to Meaning | 588 | ||
| Location, Location, Location | 588 | ||
| Nature: The Five Senses | 588 | ||
| Art | 589 | ||
| Music | 589 | ||
| Creating A Spiritual Legacy | 589 | ||
| Ethical Wills: Staying Connected after Death | 589 | ||
| Ancient Roots of Ethical Wills. | 590 | ||
| Sample Questions for Ethical Wills. | 590 | ||
| Energy Work | 590 | ||
| Spiritual Assessment and Cases | 591 | ||
| Spiritual Well-Being | 592 | ||
| Spiritual Distress | 592 | ||
| Religious Camouflage for Psychological Struggles | 593 | ||
| Lack of Apparent Connection to Spirituality or Meaning | 594 | ||
| Attending to Current and Former Religious Needs | 594 | ||
| Possible Problems | 595 | ||
| Who Provides Spiritual Assessment and Care? | 595 | ||
| How the Team Can Help | 595 | ||
| Summary | 597 | ||
| Resources | 597 | ||
| References | 598 | ||
| CHAPTER 42 Palliative Care in Long-Term Care Settings | 599 | ||
| Long-Term Care | 599 | ||
| Home Health Care | 600 | ||
| Daycare and Other Programs for Elders | 600 | ||
| Assisted Living | 601 | ||
| Nursing Home Care | 602 | ||
| Artificial Nutrition and Hydration | 604 | ||
| Evidence Summary: Risks and Benefits | 605 | ||
| Costs of Tube Feeding | 605 | ||
| Ethical Issues Regarding Artificial Nutrition and Hydration | 606 | ||
| Alternatives to Artificial Nutrition and Hydration | 607 | ||
| Summary | 609 | ||
| Resources | 609 | ||
| References | 609 | ||
| CHAPTER 43 Home Palliative Care | 611 | ||
| Clinician Competencies | 611 | ||
| Thinking Ahead | 612 | ||
| Managing with Limited Access to Diagnostic Interventions | 612 | ||
| Delegating Medical and Nursing Tasks to Family Members | 613 | ||
| The Interdisciplinary Team in the Home | 613 | ||
| Clinicians Taking Care of Themselves on the Streets | 614 | ||
| Respecting the Patient’s “Bad” Decision | 615 | ||
| System Capacities | 615 | ||
| 24/7 Access | 615 | ||
| Access to Physicians | 615 | ||
| Access to Patient Information | 616 | ||
| Supplies, Medication, and Equipment | 617 | ||
| Predictors of a Home Death | 617 | ||
| Home Palliative Care Is Not for Everyone | 617 | ||
| Summary | 618 | ||
| References | 618 | ||
| CHAPTER 44 Integrating Palliative Care Guidelines into Clinical Practice | 620 | ||
| About Guidelines | 621 | ||
| Barriers to Guideline Use | 621 | ||
| Status of Guidelines in Palliative Care | 622 | ||
| Professional Consensus about the Importance of Quality Palliative and End-of-Life Care | 622 | ||
| Beyond Guidelines: Steps to Effect Behavioral Changes among Professionals, Patients, and Their Caregivers | 623 | ||
| Improving the Palliative Care Content within General and Specialty Clinical Guidelines | 623 | ||
| Strategies to Incorporate Guidelines into Clinical Practice | 624 | ||
| The Challenge of Changing Patient and Caregiver Behavior | 624 | ||
| Diffusion of Information and Training: Applying Lessons to the Adoption of Palliative Care | 625 | ||
| Technology as A Tool for Diffusing Innovation | 627 | ||
| Linking Palliative Care Guidelines to Quality of Care: Major Challenges | 627 | ||
| The Problem of Pay-for-Performance Incentives in Palliative and End-of-Life Care | 628 | ||
| The Role of Hospital Evaluation, Accrediting Organizations, and Legislation to Promote Palliative Care and Quality Measurement | 628 | ||
| The Role of Government in Promoting Access to Palliative Care | 629 | ||
| Summary | 631 | ||
| Resources | 631 | ||
| References | 632 | ||
| CHAPTER 45 Palliative Care Services and Programs | 633 | ||
| Levels of Palliative Care Delivery | 634 | ||
| Hospital-Based Programs | 634 | ||
| Palliative Care Consultation Team | 635 | ||
| Palliative Care Unit | 636 | ||
| Ambulatory Palliative Care | 638 | ||
| Non–Hospital-Based Programs | 638 | ||
| Hospice Care in the United States | 638 | ||
| Community Volunteer Hospices in Canada | 639 | ||
| Residential Hospices | 639 | ||
| Home Palliative Care Programs in Canada | 640 | ||
| Home Care Agencies | 640 | ||
| Bridge Programs in the United States | 640 | ||
| Training and Certification | 641 | ||
| Summary | 646 | ||
| Resources | 646 | ||
| References | 646 | ||
| CHAPTER 46 The Role of the Physician in Palliative and End-of-Life Care | 648 | ||
| The Role of the Family Physician in Palliative Care | 649 | ||
| The Role of the Specialist Physician in Palliative Care | 649 | ||
| The Role of the Physician and Models of Care | 650 | ||
| Specific Skills and Competencies | 650 | ||
| Education | 651 | ||
| Physician Well-Being | 652 | ||
| Summary | 654 | ||
| Resources | 654 | ||
| References | 655 | ||
| Section 4 The Social Context | 657 | ||
| CHAPTER 47 The Economic Burden of End-of-Life Illness | 658 | ||
| Understanding the Economic Domain | 659 | ||
| Economics of End-of-life Illness | 659 | ||
| Impact of Serious Illness on Patients’ Families: Findings of the Support Project | 660 | ||
| Commonwealth-Cummings Study | 661 | ||
| Economic Impact of Dementia | 661 | ||
| Economic Impact of Cancer | 663 | ||
| Illness and Bankruptcy | 664 | ||
| How Clinicians Can Handle the Economic Dimension of Care | 664 | ||
| Economic Assessments | 664 | ||
| Making Use of the Interdisciplinary Team | 665 | ||
| Reimbursement | 665 | ||
| Empathy and Communication | 665 | ||
| Inequities in Access to Palliative Services | 666 | ||
| Summary | 668 | ||
| Resources | 668 | ||
| References | 668 | ||
| CHAPTER 48 Addressing the Social Suffering Associated with Illness: | 670 | ||
| The Mechanism of Illness-Poverty Cycles | 671 | ||
| Thresholds for an Illness–Poverty Trap | 671 | ||
| Why Is Health Care Spending High Near the End of Life? | 672 | ||
| Changing Prognosis, Changing Values, and the Rule of Rescue | 672 | ||
| Existential Equanimity at a Personal, Family, and Societal Level | 673 | ||
| What Is Economic Resilience? | 673 | ||
| The Capacity of Palliative Care to Engender Economic Resilience | 674 | ||
| Staying Away from the Illness–Poverty Trap | 674 | ||
| Optimizing Use of Goals of Care and Advance Care Planning | 674 | ||
| Optimizing Symptom Management and Family Caregiver Support | 674 | ||
| Getting People Out of the Illness–Poverty Trap | 675 | ||
| Traditional Palliative Care | 675 | ||
| Supplementary Programs | 675 | ||
| Capitalizing on Family Caregiver Experience | 675 | ||
| Feasibility: Empirical Data from Three Different Areas | 677 | ||
| Health Systems, Policy, Illness, and Poverty | 677 | ||
| Impact of Health Reform in the United States | 677 | ||
| Canadian Initiatives | 678 | ||
| Evaluating Different Models | 678 | ||
| Conclusions | 678 | ||
| References | 679 | ||
| CHAPTER 49 Palliative Care in Developing Countries | 680 | ||
| Cancer | 681 | ||
| HIV/AIDS | 681 | ||
| Palliative Care | 681 | ||
| Opioid Consumption | 682 | ||
| Palliative Care in the Developing World | 682 | ||
| Cultural Aspects | 684 | ||
| Argentina | 684 | ||
| Status of Palliative Care | 685 | ||
| Socioeconomic and Administrative Challenges | 685 | ||
| Insufficient Support from the Health Authorities | 685 | ||
| Lack of Rewards and Incentives | 685 | ||
| Palliative Care Education | 685 | ||
| Opioid Availability and Accessibility | 686 | ||
| India | 686 | ||
| Socioeconomic and Administrative Challenges | 686 | ||
| Palliative Care Education | 686 | ||
| Opioid Availability and Accessibility | 687 | ||
| The Last two Decades | 687 | ||
| The Way Forward | 688 | ||
| Romania | 688 | ||
| Socioeconomic and Administrative Challenges | 688 | ||
| Palliative Care Education | 689 | ||
| Opioid Availability and Accessibility | 689 | ||
| Adopted and Proposed Measures | 690 | ||
| South Africa | 690 | ||
| Specific Problems in the Provision of Palliative Care | 691 | ||
| Socioeconomic and Administrative Challenges | 691 | ||
| Palliative Care Education | 692 | ||
| Availability and Accessibility of Opioids | 692 | ||
| Proposed or Adopted Solutions | 692 | ||
| Summary | 693 | ||
| Resources | 693 | ||
| References | 694 | ||
| CHAPTER 50 The Therapeutic Implications of Dignity in Palliative Care | 696 | ||
| Defining Dignity | 696 | ||
| A Model of Dignity in the Terminally Ill | 697 | ||
| Addressing Dignity in Clinical Care | 698 | ||
| Illness Related Concerns Symptom Distress | 702 | ||
| Level of Independence | 702 | ||
| Dignity Conserving Repertoire | 702 | ||
| Dignity Conserving Perspectives | 702 | ||
| Dignity Conserving Practices | 703 | ||
| Social Dignity Inventory | 704 | ||
| Conclusion | 704 | ||
| Summary | 705 | ||
| References | 705 | ||
| Appendixes | e1 | ||
| APPENDIX 1 Medication Tables | e1 | ||
| Adverse Effects | e1 | ||
| Websites/Online Drug Resources | e1 | ||
| APPENDIX 2 Resources for Palliative and End-of-Life Care | e36 | ||
| Guidelines for the Use of this List | e36 | ||
| Agency for Healthcare Research and Quality | e36 | ||
| ALS Association and ALS Society of Canada | e36 | ||
| American Academy of Hospice and Palliative Medicine | e36 | ||
| American Geriatrics Society | e36 | ||
| American Hospice Foundation | e37 | ||
| American Pain Society | e37 | ||
| American Society for Bioethics and Humanities | e37 | ||
| American Society of Law, Medicine and Ethics | e37 | ||
| Americans for Better Care of the Dying: ABCD | e37 | ||
| Association of Cancer Online Resources, Inc. | e37 | ||
| Biomed Central | e37 | ||
| Brave Kids | e37 | ||
| Canadian Hospice Palliative Care Association | e38 | ||
| Canadian Partnership Against Cancer | e38 | ||
| Canadian Virtual Hospice | e38 | ||
| Caregiver Network | e38 | ||
| Caregiver Survival Resources | e38 | ||
| Caring Connections | e38 | ||
| Catholic Health Association of the United States | e38 | ||
| Center to Advance Palliative Care | e38 | ||
| Centers for Disease Control and Prevention | e39 | ||
| Children’s Hospice International | e39 | ||
| Department of Health and Human Services, Healthfinder | e39 | ||
| Dying Well | e39 | ||
| Edmonton Regional Palliative Care Program | e39 | ||
| Education in Palliative and End-of-life Care Project | e39 | ||
| End of Life/Palliative Education Resource Center | e39 | ||
| Epocrates | e39 | ||
| European Association of Palliative Care | e40 | ||
| Fraser Health Authority Palliative Care Guidelines | e40 | ||
| Growthhouse | e40 | ||
| Hospice and Palliative Nurses Association | e40 | ||
| Hospice Net | e40 | ||
| International Association for the Study of Pain | e40 | ||
| International Hospice Palliative Care Association | e40 | ||
| International Observatory on End of Life Care | e41 | ||
| International Palliative Care Resource Center | e41 | ||
| Living Lessons | e41 | ||
| National Association for Home Care and hospice | e41 | ||
| National Cancer Institute | e41 | ||
| National Center for Health Statistics | e41 | ||
| National Comprehensive cancer network | e41 | ||
| National Conference of State Legislatures | e41 | ||
| National Family Caregivers Association | e42 | ||
| National Hospice and Palliative Care Organization | e42 | ||
| National Institute on Aging | e42 | ||
| National Initiative on Care of the Elderly | e42 | ||
| OncoLink | e42 | ||
| Oregon Health Sciences University Center for Ethics in Health Care | e42 | ||
| Palliative.info | e42 | ||
| Palliative Care Australia | e42 | ||
| Palliative Care Journal Club | e43 | ||
| PalliativeDrugs.com | e43 | ||
| Stoppain.org (Beth Israel Hospital) | e43 | ||
| University of Wisconsin Pain and Policy Studies Group | e43 | ||
| When Death Is Sought: Assisted Suicide and Euthanasia in the Medical Context | e43 | ||
| WHO Europe Better Palliative Care for Older People | e43 | ||
| INDEX | 707 | ||
| A | 707 | ||
| B | 708 | ||
| C | 708 | ||
| D | 710 | ||
| E | 712 | ||
| F | 713 | ||
| G | 714 | ||
| H | 714 | ||
| I | 715 | ||
| J | 716 | ||
| K | 716 | ||
| L | 716 | ||
| M | 717 | ||
| N | 718 | ||
| O | 719 | ||
| P | 719 | ||
| Q | 721 | ||
| R | 722 | ||
| S | 722 | ||
| T | 723 | ||
| U | 723 | ||
| V | 724 | ||
| W | 724 | ||
| X | 724 | ||
| Z | 724 |