Contributors

ix

Expert Reviewers

xi

Disclaimer

xiii

Preface

xv

Chapter I

An Overview of Hospice and Palliative Care

I

History of Hospice and Palliative Care

1

II

Development of Modern Hospice and Palliative Care Movements

2

III

Hospice Philosophy

4

IV

Philosophy of Palliative Care

5

V

Hospice Care in the United States

7

VI

Palliative Care in the United States

9

Chapter II

Interdisciplinary Collaborative Practice in the Hospice and Palliative Care Settings

I

Introduction

13

II

Scope and Standards of Practice for Hospice and Palliative Nursing

13

III

Conceptual Models for End-of-Life Care

13

IV

Healthcare Teams

14

V

Conflict within the Interdisciplinary Team

15

VI

Promoting Collaboration

16

VII

The Hospice and Palliative Care Interdisciplinary Team

17

VIII

Hospice and Palliative Care Nursing Collaborative Practice Issues

18

IX

Professional Development

18

X

Research

19

Chapter III

Patterns of Disease Progression

I

Neoplastic Conditions (Cancer)

21

II

Neurological Conditions

34

III

Cardiac Conditions

36

IV

Pulmonary Conditions

38

V

Renal Conditions

39

VI

Gastrointestinal Conditions

40

VII

HIV (Human Immunodeficiency Virus) Disease and AIDS (Acquired Immunodeficiency Disease Syndrome)

41

VIII

Endocrine Disorders

43

IX

General Debility

44

Chapter IV

Pain Management

I

Introduction

47

II

Assessment of Pain

49

III

Pharmacologic Intervention

54

IV

Pain during the Final Days of Life

62

V

Summary of Principles of Pain Management

63

VI

Evaluation

64

Chapter V

Symptom Management

I

Principles

69

II

Alteration in Skin and Mucous Membranes

70

III.

Altered Mental Status: Confusion, Delirium, Agitation, Terminal Restlessness

77

IV.

Anorexia and Cachexia

83

V

Ascites

86

VI

Aphasia

88

VII

Bladder Spasms

89

VIII

Bowel Incontinence

91

IX

Bowel Obstruction

93

X

Constipation

95

XI

Diarrhea

99

XII

Dysphagia/Odynophagia

101

XIII

Dyspnea/Cough

103

XIV

Edema

108

XV

Extrapyramidal Symptoms (EPS)

111

XVI

Hematologic Symptoms

112

XVII

Hiccoughs

114

XVIII

Impaired Mobility, Fatigue, Lethargy, Weakness

117

XIX

Increased Intracranial Pressure (ICP)

121

XX

Myoclonus

122

XXI

Nausea and Vomiting

124

XXII

Paresthesia and Neuropathy

128

XXIII

Seizures

130

XXIV

Sleep Pattern Disturbance/Insomnia

132

XXV

Urinary Incontinence/Retention

134

Chapter VI

Care of the Patient and Family

I

Introduction

141

II

Definitions

141

III

Psychosocial Aspects of Care

142

IV

Spiritual Aspects of Care

146

V

Cultural Aspects of Care

148

VI

Education

149

VII

Advocacy

151

VIII

The Environment of Care

153

IX

The Death Event

155

X

Grief and Loss

156

Chapter VII

The Dying Person in Various Care Settings

I

The Challenge for Nurses to Provide Quality End-of-Life Care

163

II

The Need for Improved Care at the End of Life (EOL)

163

III

The Role of the Nurse

170

IV

The Nurse’s Role in Improving Care Systems

171

V

Death and Dying in the Hospital Setting

173

VI

The End-of-Life Patient in the Long-Term Care Setting

175

VII

The End-of-Life Patient in the Assisted Living Setting

181

VIII

Care of the Veteran

181

IX

Summary

183

X

Conclusion

183

Chapter VIII

End-of-Life Care for the Child and Family

I

Introduction

187

II

Common Pediatric Diagnoses Seen in Hospice/Palliative Services

187

III

Differences between Pediatric and Adult Hospice Care

191

IV

General Issues Related to Admission of Pediatric Patients

193

V

Developmental Considerations in Pediatric Assessment

197

VI

General Care Issues for Child and Family

198

VII

Counsel/Provide Emotional Support for Child’s Grief

203

VIII

Personal and Professional Boundaries in Pediatric End-of-Life Care

207

Chapter IX

Indicators of Imminent Dying

I

Introduction/Overview

211

II

Guiding Principles to Facilitate Natural Dying

212

III

Indicators of Imminent Death

212

IV

Psychosocial and Spiritual Issues

215

V

Family Caregiver Support and Teaching

216

VI

Grief Coaching and Resources

217

VII

The Death Event

218

VIII

Aftercare Rituals and Family Support

218

IX

Professional Coping with Care of the Dying

220

X

Be Aware of the Emotional Needs of Colleagues Caring for Dying Patients

220

Chapter X

Economic and Policy Issues in Hospice and Palliative Care

I

Economic Outcomes for End-of-Life Care

223

II

Access to Healthcare Systems at the End of Life

225

III

Reimbursement Sources for End-of-Life Care

225

IV

Relevant Economic Issues in End-of-Life Care

233

Chapter XI

Trends for the Future

I

Issues Affecting Healthcare Delivery in the Next 20 Years

239

II

Goals for Reform of End-of-Life Care in 10 Years

241

III

Actualizing a New Model for Reform of End-of-Life Care

241

IV

Legislation as a Component of Reform

241

V

Reimbursement as a Component of Reform

242

VI

Standards of Care as a Component of Reform

242

VII

Research as a Component of Reform

243

VIII

Key Partnerships as a Component of Reform

243

IX

Future Professional Roles in Hospice/Palliative Care

244

X

Model Programs

245

XI

Clinical Practice Guidelines for Quality Palliative Care

245

Chapter XII

Advance Care Planning: The Role of the Nurse

I

Introduction

247

II

Goals of Advance Care Planning

247

III

Clarifying Terminology: Advance Directives and Advance Care Planning

248

IV

The History of Advance Directive Movement in the United States

248

V

Advance Care Planning: The Nurse’s Role

249

Chapter XIII

Ethical Issues in End-of-Life Care

I

Introduction

257

II

Ethics of Care

259

II

Ethical Dilemmas and Conflicts

259

III

Common Ethical Issues at the End of Life

261

IV

Cultural Issues in End-of-Life Ethical Decision-Making

264

V

Nursing Roles

264

Appendix 1

Website/Internet Resources

271

Appendix 2

Commonly Used Medications

275