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Contents

Contributors

Preface

Chapter 1: Introduction to End-of-Life Care for Mental Health Professionals

Background

Challenges in Providing Hospice and Palliative Care

Needs of Individuals and their Families

General Intervention Strategies

References

Chapter 2: Trajectories of Chronic Illnesses

Introduction

Dying Trajectories

Prognostication and Medicare Guidelines

Changes Associated with Dying and the Symptom Experience

Barriers to Quality End-of-Life Care

Preparing for the Death

Conclusion

References

Appendix—General Online Resources for Hospice and Palliative Care

Chapter 3: The Cultural Context of Spirituality and Meaning

End-of-Life Care and Older Adults

The Role of Communication in Meaning-Making and Hope

Spiritual Aspects of Care

Spiritual Screening and Spiritual Assessment

The Relationship between Spirituality and Psychology

Conclusion

References

Chapter 4: Working With Family Caregivers of Persons With Terminal Illness

The Context

How do I Know What Treatments are Right?

What Should I be Saying?

How Should I be Feeling?

Conclusion

References

Chapter 5: Serious Mental Illness

Advanced Physical Disease, Psychiatric Symptoms, and Mental Disorders

Specific Mental Disorders and their Management

Conclusion

References

Chapter 6: Advance Care Planning

Advance Directives

Conversations about Advance Directives

Durable Power of Attorney for Health Care

Practical Issues in Advance Care Planning

Challenges with Advance Care Planning

Conclusion

References

Chapter 7: Pharmacologic Management of Pain

Palliative Perspective

Scope of the Problem

Visual Model for Pain

General Prescribing Strategies

Basic Pain Physiology

Classification of Pain

Pharmacologic Therapy

Rational Combinations

Routes of Administration

Conclusion

References

Chapter 8: Nonpharmacological Approaches to Pain and Symptom Management

Brief Overview of Pain and Suffering

Goals and Benefits of Nonpharmacological Interventions

Types of Pain Management Interventions

Conclusion

References

Chapter 9: Grief and Bereavement Care

Overview of Grief and Aging

Grief Process

Conceptualizations of Grief

Multidimensional Impact of Grief

Assessment and Screening

Education and Intervention

Narrative

Conclusion

References

Chapter 10: Complicated Grief

Introduction

Complicated Grief

Complicated Grief in the Palliative Care Setting

Treatment Approaches for Complicated Grief

Conclusion

References

Chapter 11: Health-Care Teams

Background

What is a Team?

Types of Teams

Palliative Care Consult Teams

Challenges of Teams

General Considerations When Working with Teams

Communication

Navigating Medical Systems and Improving Communication with Providers

Closing Suggestions for Community Mental Health Providers

References

Chapter 12: End-of-Life Care in Long-Term Care Settings

End of Life in Long-Term Care: Concerns for Older Adults, Families, and Staff

Issues for Residents

Case Study—Alan

What Makes a “Bad” Death in LTC?

Case Study, Continued

Facilitating a “Good” Death in LTC: Barriers

Interventions in Long-Term Care for the End of Life

Conclusion

References

Chapter 13: Advocating for Policy Change

Federal Policy Issues Related to Mental Health and End of Life

Conclusion

References

Chapter 14: Physician-Assisted Suicide in the United States

Definitions and Terminology

Hastened Death Policies

Conclusion

References

Chapter 15: Creating Ethics Conversations in Community

One Community’s Approach

A Few Specific Medical Ethics Principles

Resource List

Chapter 16: Professional Self-Care

Introduction

Self-Assessment

Are Palliative Care Professionals at Higher Risk?

Assessing Our Risk Level

Risk Factors Related to the Work Setting

Understanding Burnout

Understanding and Managing Countertransference

Developing Protective Strategies

Working with Patients after a Personal Loss

Conclusion

References

Chapter 17: Embracing the Existential Invitation to Examine Care at the End of Life

Introduction

Importance of Reflective Practice

Challenges Inherent in Working with those at End of Life

Managing these Challenges

Professional Coping Strategies

Personal Coping Strategies

Implications for Practice

Cultivating a Lasting Legacy of Leadership

References

Internet Resources

Author Index

Subject Index

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Contributors

Silvia Sara Canetto, PhD

Colorado State University

Fort, Collins, CO

David B. Feldman, PhD

Department of Counseling Psychology

Santa Clara University

Santa Clara, CA

Michelle S. Gabriel, RN, MS, CNS, ACHPN

VA Palo Alto Health Care System

Palo Alto, CA

Julia E. Kasl-Godley, PhD

VA Hospice and Palliative Care Center

VA Palo Alto Health Care System

Palo Alto, CA

Sheila Kennedy, MSW, LCSW

VA Hospice and Palliative Care Center

VA Palo Alto Health Care System

Palo Alto, CA

Donna Kwilosz, PhD

Navitas Cancer Rehabilitation Centers

Albuquerque, NM

Mary M. Lewis, PhD

Senior Life Consultants, Inc.

Dublin, OH

Jasmin Llamas

Department of Counseling Psychology

Santa Clara University

Santa Clara, CA

Shirley Otis-Green, MSW, ACSW

City of Hope National Medical Center

and Beckman Research Institute

Duarte, CA

Sara Honn Qualls, PhD

Department of Psychology and Gerontology Center

University of Colorado at Colorado Springs

Colorado Springs, CO

E. Alessandra Strada, PhD

Department of Pain Medicine and Palliative Care

Beth Israel Medical Center

New York, NY

W. Nat Timmins, MD

Pikes Peak Hospice and Palliative Care

Colorado Springs, CO

Robert K. Twillman, PhD

University of Kansas School of Medicine

Kansas City, KS

Malham M. Wakin, Retired Brigadier General

U.S. Air Force Academy

Colorado Springs, CO

Stephanie C. Wallio, PhD

University of Kansas School of Medicine

Kansas City, KS

Preface

End-of-life care is recognized as a critical component of geriatric health care, but is really a component of health across the lifespan. Choices made early in life obviously influence quality of life and decision options at the end of life. The lifespan framework for health care reminds us that end-of-life care is but one more step in a lifelong process. However, awareness that life will end helps us ask questions about values, preferences, choices, and motivations at all ages. Research evidence that death is not as anxiety-provoking for older adults as it was in mid-life does not imply that death awareness is not salient. Indeed, care choices in later life are often viewed differently in the conscious presence of death than in the absence of that awareness. We believe that deep reflection and understanding of end-of-life care enriches clinical understandings of mental health service providers who work with older adults in any context.

Despite its considerable stigma, or perhaps because of it, end-of-life care has ended up being an innovative leader in reconceptualizing health care. Indeed, in recent years, hospice and palliative care models have led the way into integrated care. The models that guide end-of-life care inevitably include multiple disciplines, typically operating as an interprofessional team. The rich interconnectedness of care provided by professionals representing several disciplines has been fostered explicitly in end-of-life care. Many use hospice care as an ideal against which to compare extraordinarily fragmented, pathology-focused, high-tech medical models that dehumanize us at the times when we most need genuine care. Human-to-human care is at the core of excellent health- and wellness-service systems. Ironically, those working at the very end of life seem to have moved farther faster than any other domain of health care in generating new models and standards.

Perhaps it is obvious then why this book is included in Wiley’s Clinical Geropsychology series that is designed to invite and educate practitioners who serve older adults. Within the field of Psychology, a set of competencies for geropsychologists were defined within the Pikes Peak Model for Training in Professional Geropsychology (Knight, Karel, Hinrichsen, Qualls, & Duffy, 2009). End-of-life care is an explicit component of those competencies. Mental health providers working with older adults simply must develop the competencies needed to work with end-of-life care issues, challenges, concerns, opportunities, and so forth.

The book series on Clinical Geropsychology was launched out of an annual Clinical Geropsychology conference held in Colorado Springs for five years between 2005 and 2009. The book series paralleled the conference, with the shared goal of providing advanced training to experienced mental health providers seeking postlicensure learning opportunities related to geriatric mental health. The structure of any book reflects a creative process; these books reflect interpersonal as well as intrapersonal creativity. The editors of each book in this series could describe the unique challenges to summarizing each entire field in a way that is useful to practicing clinicians. The first book, Psychotherapy for Depression in Older Adults (Qualls & Knight, 2006) took up the challenge of summarizing a vast and growing literature in a way that was practical for clinicians treating depressed older adults with complex presentations of symptoms and in contexts that extend far past our empirical research base. The interdisciplinary nature of a rapidly emerging new field was the challenge of the second book, Changes in Decision-Making Capacity in Older Adults: Assessment and Intervention (Qualls & Smyer, 2007). The third book faced yet a different challenge: building an empirically based approach to clinical work with older families despite the extremely limited base of clinical outcome research (Aging Families and Caregiving: A Clinician’s Guide to Research, Practice, and Technology, Qualls & Zarit, 2008).

The book you hold faced yet another unique challenge—how to keep visible the raw, poignant existential issues faced daily by clinicians doing this work while guiding the reader into what is known about practice models, patterns, and research. This book emerged from the 2008 conference, designed by the conference presenters over a lovely dinner on a warm Colorado summer evening in the shadow of Pikes Peak. The authors of this book were the conference faculty, selected for their rich clinical experience that was grounded in research as well as existential self-awareness. The vast majority provide end-of-life clinical care daily and train students to do the same. The task of writing with the authentic voice of a clinician who is working in the trenches as well as the authoritative voice of the research evidence base required finesse. We believe they succeeded remarkably, but you will be the judge as to whether the book is genuinely useful to you.

The book opens with an overview chapter (Kasl-Godley, Chapter 1) that orients the reader to what is unique about end-of-life care from other types of mental health services. A series of clinical issues are then addressed in chapters that include the details needed by any clinician new to the field. Exactly how does dying occur, and how does it vary across illnesses (Gabriel, Chapter 2)? What are the meaning and spiritual issues that are nearly inevitably visible in end-of-life care (Strada, Chapter 3)? How are families engaged in end-of-life care, and what services do mental health clinicians provide them (Feldman & Llamas, Chapter 4)? How does the presence of a mental disorder alter end-of-life experiences and care, and how should providers address disorders that appear at the end of life (Kasl-Godley, Chapter 5)? What are the tools and strategies involved in advanced care planning, and how do they play out during end-of-life care (Gabriel & Kennedy, Chapter 6)? Pain management is a huge issue at the end of life, with pharmacological (Timmins, Chapter 7) and nonpharmacological (Wallio & Twillman, Chapter 8) approaches available to mental health providers. Bereavement and grief also are inevitable processes at the end of life, whether normal (Otis-Green, Chapter 9) or complicated by other factors (Strada, Chapter 10).

Mental health providers often find that their work is influenced as much by the settings of professional practice as by the technical skills of their profession. Kasl-Godley and Kwilosz (Chapter 11) offer a guide to the interprofessional team as a common care context within hospice and palliative care service systems. Lewis (Chapter 12) guides the reader through unique aspects of end-of-life care that occur in the institutional and residential environments of long-term care. Ethical, legal, and policy contexts also exert significant impact on care services. Twillman and Lewis (Chapter 13) describe current policy issues that influence services so directly that they require attention and engagement by providers. A unique chapter in this book is the essay on hastened death policy and practice that receives so much media attention today (Canetto, Chapter 14). Wakin (Chapter 15) describes a community planning process by which one community created an end-of-life ethical guidebook for providers as the culmination of many, many, many community conversations.

Ultimately, end-of-life care is emotionally and existentially evocative for the clinicians who work with the fragile linkages between life and death on a daily basis. Strada (Chapter 16) offers words of wisdom, guidance for the journey, and other recommendations about self-care that is needed to sustain capacity to provide care. Finally, Otis-Green (Chapter 17) invites us to embrace the existential opportunities that are embedded in end-of-life care because they will enrich our lives as humans as well as providers.

We hope you find this book as rich as we have found the process of creating it.

REFERENCES

Knight, B. G., Karel, M. J., Hinrichsen, G. A., Qualls, S. H., & Duffy, M. (2009). Pikes Peak model for training in professional geropsychology. American Psychologist, 64, 205–214.

Qualls, S. H., & Knight, B. G. (Ed.). (2006). Psychotherapy for depression in older adults. Hoboken, NJ: Wiley.

Qualls, S. H., & Smyer, M. A. (Ed.). (2007). Changes in decision-making in older adults: assessment and intervention. Hoboken, NJ: Wiley.

Qualls, S. H., & Zarit, S. H. (Ed.). (2008). Aging families and caregiving: a clinician’s guide to research, practice, and technology. Hoboken, NJ: Wiley.