The Palliative Care and Hospice Caregiver's Workbook

Sharing the Journey with the Dying

Lura L Pethtel, John D Engel

• Publisher: CRC Press
• Year: 2017
• ISBN:
  9781315346526
• Edition: 1
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

This educational workbook helps people who build compassionate relationships with dying people. Accompanied by its trainer's guide, it presents a comprehensive, sequential learning program for caregivers in non-medical capacities covering everything from self-understanding to spiritual issues, listening skills and expressive activities, developing the skills, awareness and resilience needed for this privileged and sensitive role. The program includes a variety of learning experiences, including large and small group activities, discussion, close reading, creative writing, self exploration, and skill development and practice. This is an invaluable resource for small groups of individuals who wish to volunteer in hospice or palliative care settings. A copy of the guide for trainers is included in each pack of workbooks, and is also freely available online. 'The best resource I have seen to guide teachers and learners in this complex training process. I predict that those of you who try it with your staffs and trainees will find that it bears fruit both for your patients and their families, but also for the sustenance and personal development of the staff members themselves.' Timothy Quill, M.D., in his Foreword

Part 1: Getting Started

This program begins by attending to issues that are important for the success of your training, and getting acquainted with your trainer(s) and with your colleagues who also wish to serve the dying. You will learn about the historical shift in how and where people die, the basic functions of modern-day hospice and palliative care, and the roles and functions of professional and lay caregivers. Finally, you will engage in a readers’ theater – a play that will enable you to be a companion to Ivan Ilyich on his dying journey.

Unit 1.1 Gaining Perspectives

KEY ISSUES

Modern medicine and technology, hospice, palliative care, palliative care team.

To do this work, one must be both a romantic and a realist, both a guide and a student, and most of all, a committed partner.

Timothy Quill, M.D. (1:31)

___________________

Introduction

The important work that you will be doing depends on your learning and/or strengthening the skills that are critical for a successful caregiver. In our previous experience with training groups such as this, we learned that participants form strong bonds which ultimately serve to foster trust and authenticity as they work through the exercises together. Getting acquainted with your trainer(s) and with your colleagues is the first step in this process. This Unit also provides you with a brief perspective on how end-of-life care has changed over time, and offers you the opportunity, through a readers’ theater,* to commonly experience the dying process of one individual.

Exercises

A. (35 minutes) Taking Care of Business

The trainer will introduce him- or herself and provide you with instructions about such matters as room assignments, schedule, seating arrangements, parking availability, and so forth. Then, in turn, each participant should state their name and where they live. Do not provide any other information at this time.

B. (30 minutes) Introduction to the Training Program

One or more volunteers should read aloud About this Educational Guide provided below. Take this opportunity to ask questions about the program and express any concerns that you may have.

About This Educational Guide

This educational guide has been designed as a training program for small groups of individuals who wish to volunteer in hospice or palliative care settings and who have the benefit of a trainer. Professional caregivers who want to strengthen their skills, and relatives or friends who anticipate attending to a dying person will also find it valuable, even though they may not fully engage in some of the exercises that require group participation. It does not encompass the physical/medical aspects of the dying process, but rather it focuses on the skills and abilities that are critical in establishing a compassionate relationship with a dying person and assisting them with psycho-social-spiritual issues.

The guide has been formatted as a paper–pencil workbook organized into five Parts that provide a comprehensive and sequential learning program. It comprises 16 separate but related Units, each constructed to be approximately 180 minutes long. Every Unit begins with a listing of key issues, a quieting exercise, and the sharing of a reflective journal note based on the activities in the previous Unit. (Please note that this first Unit does not include either a “quieting exercise” or a “journal note.”) This material is followed by introductory material and skill exercises. Each Unit ends with an assignment for the next session (some have been written into the Guide and some will be determined by the trainer), additional resources (when relevant), and a reference section.

A variety of learning experiences have been employed, including large and small group activities, discussion, close reading, creative writing, self-exploration, and skill development and practice. Selected prose and poems that are relevant to the context have been included throughout. The skills that we introduce are fundamental and extremely important for the successful caregiver.

Organization

Part 1: Getting Started provides participants with the opportunity to learn about the program and become acquainted with their trainer(s) and colleagues. A brief essay describes the historical shift in how and where people die, and covers basic functions of modern-day hospice, palliative care, and caregiving teams. Participants will engage in a readers’ theater. Part 1 contains just one Unit:

• ▪ Gaining Perspectives.

Part 2: Understanding the Caregiver’s Self provides exercises and activities that enable participants to explore and come to terms with their own feelings about dying and death. This Part contains six Units:

• ▪ Reflecting on Death
• ▪ Mindfulness
• ▪ Self-Knowledge
• ▪ Spiritual Knowledge
• ▪ The Whole Self: Body–Mind–Spirit
• ▪ Facing Death.

Part 3: Understanding Ourselves in Service of the Dying Person focuses on the many influences in our lives and how they shape our personhood and beliefs and how we deal with life losses. This Part contains three Units:

• ▪ Social and Cultural Influences
• ▪ Spiritual and Religious Influences
• ▪ The Nature of Loss and Suffering.

Part 4: Ways of Helping the Dying Person focuses on effective communication and the essential skills of mindful listening and responding with empathy and compassion. This Part contains five Units:

• ▪ Fundamentals of Communication
• ▪ Compassionate Presence, Mindful Listening, and Effective Responding
• ▪ Fears and Assumptions About Death
• ▪ Narratives of Suffering
• ▪ Expressive Activities that Aid in Relieving Suffering.

Part 5: Honoring the Caregiver emphasizes the need for self-care and provides an opportunity for trainees to conduct a self-check for readiness to begin the journey with a dying person. This Part contains just one Unit:

• ▪ Nurture and Honor Yourself!

Guidelines for Participants

The skills that we introduce in this guide are fundamental and essential for the role of caregiver. However, just like learning to ride a bike or play a musical instrument, the skills must be practiced correctly, regularly, and consistently. Not only are they important for caregiving, but they are also life skills that will help participants to build and improve both their personal and professional relationships. You may find that you already possess many of the skills which are important for this work. If this is true for you, make this a time to review and refresh your skills and help your colleagues to develop theirs. Others of you may feel that you still have a long way to go, so you should take full advantage of this opportunity to learn. Individual caregivers and friends or relatives who use this guide should read each Part and Unit carefully and attempt to complete each exercise.

In order to be fully prepared as knowledgeable and effective caregivers, trainees are strongly advised to attend all sessions, to participate fully and openly, and to demonstrate compassion, genuineness, honesty, and acceptance of the opinions, beliefs, and values of others. Participants should be willing to ask questions, absorb new information and consciously practice techniques. Learning will be greatly enhanced through the willingness of all participants to self-explore and share their thoughts and feelings, and to help others to do the same.

Throughout the program, participants will be asked to read aloud and discuss each element of the Unit, including the opening quote, the introduction, and any poems or prose that are located in the Unit. Beginning with the very first session, we cannot over-emphasize the need for participants to maintain confidentiality throughout this work with colleagues and later while attending a dying person. The sharing of intimate information is highly unethical.

Program Learning Objectives

1. Develop and/or strengthen the knowledge, skills, attitudes, and behaviors that are essential for effective caregiving.
2. Understand and commit to the importance of confidentiality.
3. Develop mindfulness.
4. Examine our own current attitude, assumptions, and concerns about death.
5. Learn to explore the needs of the dying person with respect and compassion.
6. Develop and strengthen self-awareness and identify personal needs and goals for personal growth.
7. Examine the many influences in our lives.
8. Develop effective communication skills.
9. Examine our own spiritual beliefs and how they affect our life.
10. Discern the body–mind–spirit interconnections.
11. Become knowledgeable about the differing spiritual beliefs and practices among human beings.
12. Develop an understanding of the effects of loss and the nature of suffering and grief.
13. Explore the ways of dying and the many changes and needs that may arise during the dying process.
14. Learn and practice techniques that may alleviate suffering.
15. Explore ways to care for ourselves while caring for another.

C. (40 minutes) Getting Acquainted

Take about 5 minutes to complete the Biosketch below. Please write legibly so that someone else will be able to read it. Form pairs. Give your Biosketch to your partner. Take 2 to 3 minutes to study their sketch and then discuss it briefly. You may wish to clarify some points with this individual. Then, using the sketch and any notes that you have, introduce your partner to the group.

Name ________________________________________

Home town/city ________________________________________

Family make-up ________________________________________

Ethnic background ________________________________________

Religious affiliation (if any) ________________________________________

Educational background ________________________________________

________________________________________

Work, place(s) of employment ________________________________________

________________________________________

Interests, hobbies, activities, etc. ________________________________________

________________________________________

Reasons for taking this training ________________________________________

________________________________________

________________________________________

Strengths you bring to this training ________________________________________

________________________________________

________________________________________

D. (30 minutes) The Dying Process in Modern Times

The trainer will ask for volunteers to share the reading of this short essay. Discuss key issues in the large group and ask any questions you may have.

________________________________________

The word death is not pronounced in New York, in Paris, in London, because it burns the lips. The Mexican, in contrast, is familiar with death, jokes about it, caresses it, sleeps with it, celebrates it; it is one of his favorite toys and his most steadfast loves.

Octavio Paz (1:3)

Throughout time and all cultures, the suffering and dying have sought the help of healers. Healing, as discussed by Michael Kearney (2: ixx), is a “process of becoming psychologically and spiritually more integrated and whole; a phenomenon which enables persons to become more completely themselves and more fully alive.” Prior to the twentieth century, people in the Western world believed that caring for the dying occurred in the home. The sick and dying were taken care of primarily by fami...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Dedication Page
• Contents
• Foreword
• About the Authors
• Acknowledgements
• Part 1 Getting Started
• Part 2 Understanding the Caregiver’s Self
• Part 3 Understanding Ourselves in Service of the Dying Person
• Part 4 Ways of Helping the Dying Person
• Part 5 Honoring the Caregiver