The Palliative Care and Hospice Caregiver's Workbook

Sharing the Journey with the Dying - 1st Edition

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 Contents
Foreword by Timothy Quill M.D. v
About the Authors vii
Acknowledgements viii

Part 1 Getting Started 1

Unit 1.1 Gaining Perspectives 2

Part 2 Understanding the Caregiver’s Self 29

Unit 2.1 Reflecting on Death 30
Unit 2.2 Mindfulness 37
Unit 2.3 Self-Knowledge 45
Unit 2.4 Spiritual Knowledge 55
Unit 2.5 The Whole Self: Body–Mind–Spirit 63
Unit 2.6 Facing Death 66

Part 3 Understanding Ourselves in Service of the Dying Person 80

Unit 3.1 Social and Cultural Influences 81
Unit 3.2 Spiritual and Religious Influences 88
Unit 3.3 The Nature of Loss and Suffering 93

Part 4 Ways of Helping the Dying Person 99

Unit 4.1 Fundamentals of Communication 100
Unit 4.2 Compassionate Presence, Mindful Listening, and Effective Responding 107
Unit 4.3 Fears and Assumptions about Death 118
Unit 4.4 Narratives of Suffering 127
Unit 4.5 Expressive Activities That Aid in Relieving Suffering 134

Part 5 Honoring the Caregiver 141

Unit 5.1 Nurture and Honor Yourself! 142

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 The Educator’s Guide can be downloaded from
www.radcliffepublishing.com/edguidepalcare

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 Foreword
Participating in the care of seriously ill, potentially dying patients and their families is not
for the fainthearted or for those who are uncurious about themselves or others. On the
other hand, there is no better opportunity to learn about the human condition and about
the potential for human connection than to voluntarily join with patients and their families
in this journey. Of course, patients and families do not have a choice about traveling this
path. However, those who make the commitment to travel with them have the opportunity
not only to make a difference to those for whom they are caring, but also to grow and
evolve themselves as human beings.
Many are drawn to this work because of losses they have experienced in their own
lives. Past personal experiences of loss and death can provide a valuable background and
important internal resource to identify and empathize with patients and families who are
going through this in real time. However, that same experience can also cause lack of
objectivity, confusion and distortion between the patient’s and family’s experience and one’s
own. It is therefore critical to explore one’s own experience in considerable depth before
trying to engage in a therapeutic way with critically ill patients and their families.
Considerable self-awareness and self-knowledge are needed to embark on this work.
Unfortunately, relatively few clinicians, much less volunteers, have had sufficient training
to be fully effective. Good will, dedication, altruism, and enthusiasm are helpful qualities,
but they are insufficient in themselves. The kind of learning that is required is a mix of
understanding and exploring one’s own personal experience of illness, loss and death, as
well as understanding how one’s views about life and death influence one’s behavior and
thinking. It also requires learning how to separate one’s own experience, values, and biases
from those of the patients and families with whom one is working. Finally, trainees must also
learn more about how to take care of themselves while they are maintaining engagement
with others.
This workbook, which has been prepared by Lura Pethtel and John Engel from the
Institute for Professionalism Inquiry of Summa Health System, is the best resource I have
seen for guiding teachers and learners in this complex training process. The workbook
Units include elements of mindfulness, narrative medicine, appreciative inquiry, and reading

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 provocative articles such that the learners over time come to understand the origins of their
own views, values, and biases about death and dying, as well as aspects of what it means
to be a caregiver. Participants will also learn about and experiment with modern methods
of communication, compassionate presence, and partnering with seriously ill patients and
their families. This training gains depth each session, such that learners will emerge from
the process more self-aware and more capable of genuine engagement when they eventually
join with patients and families in this remarkable process.
Those hospice and palliative care programs that are serious about making sure that their
trainees have sufficient self-awareness to be able to compassionately engage with patients
and families would do well to consider using these exercises in their training processes.
They can be used for training volunteers, hospice nurses, and social workers, as well as
physicians. These exercises would also be useful for hospice and palliative care fellows,
or for clinicians who are transitioning to this work from other fields. The beauty of the
workbook is that each of the Units is a self-contained workshop which can be used in
isolation, but the maximum impact of the training would be achieved by completing all of
the sessions, since they are well thought out and incremental, each building on preceding
sessions and covering an important aspect of the work. These exercises would also be
useful for palliative care or hospice teams to go through together as part of their ongoing
professional development.
So, many thanks to Lura Pethtel and John Engel for providing us with such a thoughtful
guide. I predict that those of you who try it with your staff and trainees will find that it bears
fruit not only for your patients and their families, but also for the sustenance and personal
development of the staff members themselves.

Timothy Quill, M.D.

Professor of Medicine, Psychiatry, and Medical Humanities
Director, Center for Palliative Care and Clinical Ethics
University of Rochester School of Medicine and Dentistry
March 2010

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 About the Authors
Lura L. Pethtel M.Ed. During her long tenure at the Northeastern Ohio Universities
College of Medicine, Lura served as Associate Dean and taught in the areas of behavioral
sciences and humanities, and co-directed courses in spirituality and medicine and in hospice
and palliative care. She is a co-founder of the Institute for Professionalism Inquiry, Summa
Health System, where she coordinates research and evaluation activities as well as the
Humanism and the Healing Arts conference series, and serves as co-director and faculty for
the Narrative Medicine course for family medicine residents. Lura worked with the Last
Acts organization on a hospice lay volunteer training program, trained more than 100 lay
pastoral care volunteers for the Summa Health System, and has conducted workshops on
spirituality and health, and spirituality in healthcare and in the workplace. She has served
as pastoral care volunteer in the hospital’s intensive-care unit, and currently is on call as
a vigil volunteer in the palliative care unit. She is co-author of several journal articles and,
most recently, with colleagues of the Institute for Professionalism Inquiry, she co-authored
the book Narrative in Health Care: Healing Patients, Practitioners, Profession, and Community.

John D. Engel Ph.D. John, a social scientist, is Scientific Director at the Institute for
Professionalism Inquiry, Summa Health System, and Professor Emeritus of Behavioral
Science, Northeastern Ohio Universities College of Medicine. His research interests are
the philosophy of social science inquiry, qualitative methodology, narrative healthcare,
integrating humanities and social sciences with health professions education and practice,
and care of the dying. He has taught courses in hospice and palliative care, and has also
attended several dying family members and close friends. John has served as founding
associate editor for Qualitative Health Research and edited the methodology section of
that journal. He has been a member of the editorial board of Evaluation and the Health
Professions since its inception. He has published extensively in his areas of interest, and is
currently engaged in conducting a longitudinal study of professional development as well as
a participatory action project on the impact of narrative practice in a department of family
medicine. His most recent book, Narrative in Health Care: Healing Patients, Practitioners,
Profession, and Community, was published with colleagues at the Institute for Professionalism
Inquiry.
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 Acknowledgements
We wish to express our gratitude to the countless students, patients, friends, and families
who, throughout the years, have shared their lives with us and have been our remarkable and
gracious teachers. We give special thanks to Elizabeth Armstrong, and to Drs. Peter Ways,
Elizabeth Young, and Timothy Quill, who devoted precious time to reviewing and editing
this work, and to Drs. Agnes Csikos, Joseph Zarconi, and Sally Missimi, who partner with
us in our endeavors. We are immensely grateful that our friend and colleague, Dr. Robert
Blacklow, saw reason to support and promote our early projects which laid the path to this
time and work.

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 To Joe Aulino, our dear friend and soul mate,
who showed us how to both live and die well.

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 There comes a time
when sea and land
come to rest.
There comes a time
when even the heavens withdraw.
There comes a time
when weary travelers
need a rest from the journey.

             Rumi

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 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.

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 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.

* A readers’ theater is a play in which lines are not memorized by actors, but instead are read by group
participants.

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 Getting Started

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.

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 The Palliative Care and Hospice Caregiver’s Workbook

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

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 Getting Started

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.

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 The Palliative Care and Hospice Caregiver’s Workbook

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 

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 Getting Started

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 family members and friends, or sometimes by hired
caregivers. During the early twentieth century, with the rise of hospitals, dying became
a medical event and most people in Europe and North America went to hospital to die.
By the mid-1970s, more than 70% of deaths occurred in hospital settings. The shift in
location of dying had an impact on the nature of dying. Too often, people’s experiences in
these institutions were dehumanizing. In these settings, family members were “guests” and
control of care rested with unknown healthcare professionals. It must also be noted that,
during this period, dying was a relatively brief affair; few experienced prolonged states of
severe incapacity and dependence.
As modern medicine became more scientific and as the use of medical technology
increased during the mid twentieth century, the goal of medicine shifted towards the
identification and cure of disease. The purpose of medicine became the prolongation of
life through the use of increased technological intervention and advanced pharmacopeias.
Most notable among these technological interventions were the techniques of resuscitation
and advanced life support that led to the development and widespread proliferation of
cardiopulmonary resuscitation (CPR) and intensive-care units (ICUs) during the 1960s (3).
In addition, with the development of sophisticated drug therapies, infectious diseases were

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