Transitions in Dying and Bereavement A Psychosocial Guide for Hospice and Palliative Care By the Victoria Hospice Society, and Moira Cairns, R.S.W., Marney Thompson, M.A., and Wendy Wainwright, M.Ed.

Excerpted from the Introduction for Transitions in Dying & Bereavement: A Psychosocial Guide for Hospice and Palliative Care by Victoria Hospice Society and Moira Cairns , Marney Thompson, and Wendy Wainwright.

Copyright © 2003 by Victoria Hospice Society. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Introduction

THE PRINCIPLES OF HOSPICE, PALLIATIVE, AND END-OF-LIFE CARE

Hospice and palliative care should ensure that dying patients and their families receive the best and most appropriate care possible. Underlying this principle is the quote expressed by psychotherapist and Holocaust survivor Viktor Frankl: “The last of the human freedoms is the freedom to choose one’s own way.” In the context of hospice palliative care, one’s own way would be to die and to mourn in a way that is congruent with how one has lived. 

The focus of hospice palliative care is to relieve suffering and improve the quality of living and dying. This kind of care is appropriate for any patient and/or family living with a life-threatening illness

• Due to any diagnosis 
• With any prognosis 
• Regardless of age 

Hospice and palliative care aims to address 

• Physical, emotional, psychological, social, spiritual, and practical concerns 
• Preparation for, and management of, self-determined life closure and the dying process
• Loss, grief, and bereavement

Hospice palliative care may complement and enhance acute treatment, or it may become the total focus of care (Canadian Hospice Palliative Care Association [CHPCA], 2002).

CORE VALUES OF HOSPICE PALLIATIVE CARE

This book is written under the assumption that hospice and palliative care are most effectively delivered by an interdisciplinary team that “typically includes one or more physicians, nurses, social workers/psychologists, spiritual advisers, pharmacists, personal support workers and volunteers and may also include physiotherapists, dieticians, occupational, recreational, and integrative therapists, and others ” (CHPCA, 2002). As part of the interdisciplinary team, counselors and other psychosocial care providers focus on the aspects of illness, death, and bereavement that lie beyond the physical. They recognize the social context that people bring to this journey — a lifetime of experiences, with particular hopes and fears and their own ways of coping with stress or problems (Price, 2001; Sheldon, 2001).

Psychosocial care encompasses a view that acknowledges the wholeness and integrity of each person and family. Working within a medical environment, which may or may not support holistic care, it is important that psychosocial professionals have ways to formalize their particular perspective and approach to care. The counseling team at Victoria Hospice finds their values effectively reflected in the 12 foundation values set out by CHPCA:

1. Each person has intrinsic worth as an autonomous and unique individual.
2. Both life and the natural process of death have value; both provide opportunities for personal and spiritual growth.
3. Patients and families must have their suffering, expectations, and concerns addressed.
4. Care is guided by quality of life as defined by the individual.
5. Caregivers enter into a therapeutic relationship with patients and families that respects dignity and integrity.
6. The patient decides with whom information is shared.
7. The patient participates in informed decision-making.
8. Care is patient-centered and family-focused.
9. All aspects of care are provided in a manner that is sensitive to the patient’s and family’s personal, cultural, and religious values, beliefs, and practices; developmental state; and preparedness to deal with the dying process.
10. Care is provided only when the patient is prepared to accept it.
11. A unified response to suffering strengthens communities.
12. Access to hospice palliative care is assured to everyone without discrimination.

USING THIS BOOK

This book is structured to mirror the transitions that occur as patients and families follow the journey from diagnosis to death and through bereavement. It identifies significant transitions, defines the psychosocial issues that each patient and family may face, and suggests interventions that can be used by those who work with these individuals. When health care providers, patients, and families have prior knowledge of what to expect, everyone can better anticipate the journey and thereby allay their sense of anxiety, fear, and powerlessness. To achieve this goal, the information within this book is organized around two frameworks or models. These provide the context for understanding the psychosocial issues and needs that patients and families encounter as they move from a diagnosis of life-threatening illness, through death, and into bereavement.

The first framework is tied to a functional tool, used predominantly by medicine and nursing, known as the Palliative Performance Scale version 2 (PPSv2) (Victoria Hospice Society, 2003). The PPSv2 is used throughout the book as a guide to key psychosocial issues that frequently occur at particular transitions in a patient’s disease process. Linking psychosocial issues to major PPS transitions provides a simple and effective way for people to orient themselves quickly to a patient’s and family’s concerns, improve communication among health care providers, and identify relevant psychosocial interventions.

Following a death, the journey taken by bereaved loved ones is also tied to a model of grief based on phases, which similarly improves communication and care.

This book may be used as a reference or clinical handbook. It is divided into ten chapters that encompass patients’ and families’ journeys through 1) diagnosis, treatment, and recurrence; 2) palliative care; and 3) bereavement. Information about children is in Chapters 2, 4, and 8. This is not intended to compartmentalize children’s concerns, but to keep the information accessible. Each chapter contains the following sections:

• Case Study: provides a snapshot of one patient and his or her family at the transition that the chapter discusses. Sections of the case study are used to give added focus to key considerations within the chapter.
• Key Considerations: identifies significant psychosocial issues within each of the transitions. Although some issues are apparent at more than one transition, they will be attached or found at the PPS level in which they are most critical.
• Assessment Questions and Interventions: provides templates that can be adapted to fit each patient/family context. Basic components include 1) listen and reflect back what is heard, 2) communicate understanding, 3) normalize through context, and 4) identify strengths.
• Our Experience: presents the perspective of counselors and others who provide psychosocial care to patients, families, and other team members at this transition.
• Team Issues: presents some of the major challenges or difficulties that commonly confront health care providers in their work with patients, families, and each other.
• Summary: places the transition in each chapter into the perspective of the Palliative Performance Scale or Phases Model of Grief.
• Reflective Activity: offers activities and exercises that may be used for teaching or team building to stimulate thought and introspection and help the readers integrate the information into their knowledge and practice.
• Resources: provides suggested articles, books, web sites, and other resources that the reader can consult for further information.
• References: lists specific references for quotes or other references used within the chapter.

In addition, a number of special features appear throughout the book, including:

• Perspective: tackles overarching topics that have broad application across all or most of the transitions and are strategically placed between chapters.
• In My Own Voice: inserts the views or insights of individuals other than the main authors.
• Focus On: covers issues and areas that are controversial, elicit a wide range of views, or are difficult to deal with.
• Sidebars: contains peripheral but important insights that add depth to material discussed in the main text.

This book is intended to convey a deep commitment to and belief in the value and efficacy of psychosocial care for dying and bereaved people. The personal stories, expertise, and insights presented may inform or inspire others to develop high standards of psychosocial care. We hope that by identifying the particular issues that patients and families may face at certain transitions, a framework for what is predictable and typical will emerge. From this framework, a common language can develop that supports examination and understanding of the psychosocial aspects of patient and family care among those providing palliative and bereavement care.

REFERENCES

Anderson , F., Casorso, L., Downing, G.M., Hill, J., & Lerch, N. (1996). Palliative Performance Scale: A new tool. Journal of Palliative Care, 12(1), 5–11.

The Canadian Hospice Palliative Care Association (CHPCA). (2002). A model to guide hospice palliative care: Based on national principles and norms of practice. Available at http://www.chpca.net.

Price, S. (2001). Has something changed? Social work, pastoral care, spiritual counseling and palliative care. Progress in Palliative Care, 9(6), 244–246.

Sheldon, F.M. (2001). Social work in palliative care: Counseling and communicating. Progress in Palliative Care, 9(6), 242–243.

Victoria Hospice Society. (2003). Palliative Performance Scale Version 2 (PPSv2). Available at http://www.victoriahospice.org/pdfs/PPSv2.pdf.