TRANSITIONS

IN DYING AND
BEREAVEMENT
A Psychosocial Guide for Hospice and Palliative Care

2 nd
Edition
by

& Marney Thompson

Wendy Wainwright

Baltimore • London • Sydney

 Introduction
SIGNPOSTS
Principles, Values, and Assumptions

After a particularly long and difficult meeting with a patient, Mr. Perryman,
and his family, the counselor sat down next to a colleague feeling drained
and upset. The colleague asked what was wrong. The counselor explained
that she had expected to meet with the man and his family to decide
whether he would stay at the hospice or go home to die. Instead, she dis-
covered that before they were able to make any plans, they really needed
to talk openly with each other about some unresolved issues; namely, the
circumstances surrounding how Mr. Perryman’s mother had died 14 years
earlier. Apparently, her death had been so disturbing and painful for the
family that any discussion about Mr. Perryman’s death was being avoided,
making the meeting with the counselor very difficult.
“Oh, so that’s what you do,” exclaimed the colleague. “I thought you
just sat at the bedside and held the patient’s hand.”

As we reflect on what hospice palliative care social workers and counselors actu-
ally do, several questions come to mind. What are their aims, and how do they
accomplish them? How can they work as a team with nurses, physicians, other
professionals, and volunteers? How can this team work together with terminally

xiii
xiv  d  Introduction

ill or bereaved individuals to improve the overall quality of end-of-life care? This
book addresses these questions by examining, in theory and in concrete detail,
the psychosocial care of individuals who are dying and bereaved. The term psy-
chosocial encompasses the emotional, intellectual, spiritual, interpersonal, social,
cultural, and economic dimensions of dying and bereavement (Powazki, Palcisco,
Richardson, & Stagno, 2000).
This book identifies the key transitions that most dying patients and their
families face, and describes the interventions that are most likely to help. We be-
lieve it is possible to identify and anticipate common experiences and still remain
open to the mystery of this work, the varying disease processes, and the unique
and exceptional people involved.
Although there is considerable information about the medical care of those
who are seriously ill and dying, or about bereavement, learning opportunities
and resources that focus on psychosocial aspects of care from diagnosis through
bereavement are scarce (Turner, Kuyini, Agustine, & Hunter, 2015). The goal of
this book is to improve overall care by making psychosocial aspects more identifi-
able and predictable. This information can be used by newcomers to the field and
by experienced practitioners alike.

Who We Are: Victoria Hospice

This book is informed and inspired by our work as counselors and social workers
at Victoria Hospice in Victoria, British Columbia, on the west coast of Canada. It
is a relatively large hospice palliative care and bereavement program in a commu-
nity of 375,000. Founded in 1980, Victoria Hospice has 130 full-time, part-time,
and casual (on-call) staff and more than 300 active volunteers.
The two primary authors of this book collectively share more than 55 years
of experience as hospice palliative care and bereavement counselors with Victoria
Hospice. Marney Thompson has worked in various roles at Victoria Hospice for
many years and is currently the coordinator for the bereavement program. Wendy
Wainwright has been working in the area of psychosocial palliative care locally,
regionally, and nationally for more than 30 years and is currently the Director of
Clinical Services for Victoria Hospice.
This book, however, was forged through the collective wisdom and experi-
ence of all the social workers, counselors, and other professionals who have worked
at Victoria Hospice over the years. They have challenged, supported, and men-
tored one another. They have questioned their own practice, developed new pro-
grams and materials, and educated others, always looking for ways to improve
care. Many of them have worked closely with the authors throughout the develop-
ment, writing, and review of the book.
The psychosocial department is composed of men and women who repre-
sent a diverse spectrum of counseling approaches and life experiences. Services
 Signposts  D  xv

include pre-death counseling for patients and families on the inpatient unit and
in the community, as well as bereavement counseling for individuals and groups.
Furthermore, these counselors provide psychosocial support to the entire hospice
team and others in our community who care for seriously ill, dying, and bereaved
people. Many have become educators and consultants throughout British Colum-
bia and Canada, and several are involved in clinical research.
The experience and expertise of this team has grown from our work with the
approximately 800 patients and their family members who register with Victoria
Hospice each year. While a majority of the patients have a diagnosis of cancer,
there are many others with circulatory, respiratory, and nervous system diseases.
Approximately 50% of the patients die on the inpatient unit. Another 25% of
patients die at home and the remaining 25% die in acute and long-term care
facilities.

About this Second Edition

More than a decade has passed since the publication of the first edition of this
book. The passage of time has brought changes in research, practice, knowledge,
attitudes, and language. These changes are reflected in this text. When the first
edition was being written in 2002, there was little research to specifically support
the practices that had been developed through direct observation and experience
by the psychosocial team at Victoria Hospice. This was precisely why we felt com-
pelled to share our experience with others who endeavor to provide the best care
and support for their patients. Today, not only have our own experiences and prac-
tices evolved, but the literature has caught up and provides quantifiable, evidence-
based support for our approach. The second edition of Transitions in Dying and
Bereavement draws generously on this welcome body of research.
The most pronounced change to the book’s content can be seen in the re-
structuring of the final three chapters on bereavement. These were formerly pre-
sented as progressive phases of grief, but they now offer an integrative approach
based on experience and new research in the field. A more informed view of the
subject takes into account varying grief-processing styles and presents different
models for assisting bereaved people. The content of this edition is further revi-
talized with new reflections from individuals who humanize and bring to life the
many challenges and satisfactions associated with their work.
Since the publication of the first edition of this book, the field of end-of-life
care has evolved, too. While specific definitions vary by country or jurisdiction,
this work is now commonly referred to as hospice palliative care. This term reflects
a shift away from a previous approach that predominantly focused on the last days
or months of the patient’s life to an approach that now includes caring for people
with a wider variety of illnesses, much earlier in their disease process, regardless
of where they are. In our professional practice and in this book, we have chosen to
xvi  d  Introduction

use the term hospice palliative care to emphasize the importance of fully integrated
services that address the diverse needs of patients and their families across care
settings, diseases, and life circumstances. Similarly, the content has moved away
from a focus on patients with cancer to include other illnesses that represent an
expanded view of end-of-life care.

The Principles of Hospice Palliative and

End-of-Life Care
Hospice palliative care should ensure that dying patients and their families re-
ceive the best and most appropriate care possible. Underlying this principle is a
sentiment expressed by psychotherapist and Holocaust survivor Viktor Frankl (as
cited by Cotter, 1999): “The last of the human freedoms is the freedom to choose
one’s own way” (p. 23). 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 address suffering and to improve the
quality of living and dying. It is an approach that is appropriate for all patients
and families living with or at risk of developing a life-threatening illness

• due to any diagnosis

• with any prognosis
• regardless of age

Hospice 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], 2013).

Core Values of Hospice Palliative Care

This book is written under the assumption that hospice palliative care is most
effectively delivered by “an interprofessional team of health care providers who
are both knowledgeable and skilled in all aspects of care within their discipline of
practice” (CHPCA, 2013, p.7). As part of the interprofessional team, counselors
and other psychosocial care providers focus on the aspects of illness, death, and
 Signposts  D  xvii

IN MY OWN VOICE
The Journey

Katherine Murray
Katherine Murray, RN, BSN, MA, CHPCN(C), FT, is a long-time palliative care nurse
and educator of nurses and home support workers in the care of dying individuals.

The adventures of life provide us with great lessons as we care for people
who are dying. Several years ago, my family prepared to head on a journey.
It was time to pack our bags, rent our home, and head out. Because we
are seven (five children, Ted, and myself), the planning seemed especially
large, and the journey seemed more awesome than if I were traveling alone.
We determined to head south into Mexico and Central America. We
bought a tape to learn Spanish and eventually mastered a grand total of
four words! We began to ask questions and search the literature. We heard
many scary things—we heard of robberies, murders, and kidnapping. One
person confided that he was not sure we would all come home alive. That
was very unnerving. It took courage to do the final packing.
Eventually, one drizzly, West Coast day, leaving our comfort zone be-
hind, we headed south into uncharted territories. We lived in four differ-
ent communities in Mexico and traveled through Guatemala. We lived
amongst the people. We were with them, heard their stories, and saw their
struggles. We learned to speak their language and appreciated the warmth
and kindness that we were shown. We grew closer as a family and stronger
in ourselves. Our dreams and goals were reached, and the journey was all
that we needed and wanted it to be.
On my return, I contemplated the parallels between our journey and
the journey of dying. We needed to talk to people who had facts about the
territory we would be travelling through; people not encumbered by fears
based on imaginary dangers and unsubstantiated stories. Dying people
also need to talk with someone who is acquainted with their territory
xviii  d  Introduction

and be cared for by people who have experience and knowledge about
the myths and realities of dying. They don’t need the sensationalism of
dying, the Hollywood version, the news hour massacres, the stories of
painful, traumatic deaths that suggest that euthanasia is the only comfort-
able option. They need people who have addressed their own fears, know
the resources, and understand the challenges of living with dying and
bereavement.
We sought information and heard much advice on where to go, where
to stay, and what to see. In our journey, we focused on what was important
to us. Of course, we met others whose focus was very different. And so it
should be.
As people are journeying toward death, they too may want to collect
information. Some want minute details. Others want only basic informa-
tion. Some read voraciously or talk voraciously, or both. As members of the
healthcare team, our job is to listen, help people identify what they need
to know, and then offer information and options. It is imperative that we
do not attempt to send a person on our journey, but rather assist them on
theirs.
In the old days, hospice was a place of refuge—a place where the
weary traveler could stop and obtain food and shelter, where the sick could
go to recover or to die. What we want to create is this kind of safe, secure
place—where a dying person can find the courage to open doors that are
difficult to open.

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 as well as their own ways of coping with stress or problems (Christ, Messner,
& Behar, 2015; Lucas, Meija, & Riffenburgh, 2013).
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 pro-
fessionals have ways to formalize their particular perspective and approach to care.
The counseling team at Victoria Hospice finds their values effectively reflected in
the four foundation values set out by CHPCA:

1. Autonomy: Each person is an autonomous and unique individual. Care is

guided by quality of life as defined by the individual. Care is only provided
when the person and family are prepared to accept it.
2. Self-actualization: Dying is part of living, and both living and dying provide
opportunities for personal growth and self-actualization.
 Signposts  D  xix

3. Dignity: Caregivers enter into a therapeutic relationship with persons and

families based on dignity and integrity.
4. Community: A unified response to suffering strengthens communities.

As psychosocial professionals, we also require knowledge and skills at our finger-

tips; we need to understand the impact of different diseases (Kendall et al., 2015),
the experience of dying and grief, theories of human and family development, and
skills in counseling. However, psychosocial care also requires the ability to form
therapeutic relationships that go beyond the obvious to a depth of understanding
that supports learning, creativity, and intimacy. It requires us to connect as human
beings—person to person and heart to heart. To this end, we aspire to be:

• Self-aware, reflective, and responsible for ourselves: We need to know ourselves—

our strengths, biases, and limitations as well as who we are as individuals
and as members of a family, a community, and a culture. We need to be
aware of our own unfinished business that could impact our relationships
with patients and their families. We must understand our particular role as
a professional, member of a healthcare team, or employee of an organization.
We need to know how caring impacts us in ways that are energizing and
nourishing as well as depleting and scarring. We need to acknowledge that
we take these aspects of ourselves into every relationship, into every patient’s
room and family’s home.
• Skilled and knowledgeable in our discipline, yet willing not to have all the an-
swers, be in charge, or be invested in the outcome: One of the major strengths
of holistic care is that it draws from the multiple perspectives of different
disciplines, patients, and families while working toward shared goals of
care. Although we each bring our frameworks, theories, and guidelines,
they must be adjusted to fit the person before us. We need to hold our ex-
pertise so that it informs but doesn’t dictate our interactions, so that people
are supported in defining their own goals, expectations, and quality of life.
When we acknowledge and respect each other’s experience and wisdom, we
are better able to partner and act as healthcare consultants rather than as
all-knowing experts.
• Gently curious: The goal of curiosity is to understand, and understanding is
the route to empathy. We may not be able to be helpful if we don’t under-
stand. It opens the door to meaningful conversations, creating a space for dif-
ferences, learning, and whatever else needs to come to the fore. We can take
a position of skilled curiosity or a beginner’s mind to support people as they
make decisions and choices about their health and lives.
• Present to the suffering of others: In our care of those facing serious illness and
grief, we need to recognize our own suffering and understand it as separate
from that of others. Self-awareness, curiosity, skill, and teamwork help us to
sit with others in their distress and disquiet.
xx  d  Introduction

Using this Book

This book is structured to mirror the transitions that occur as patients and fami-
lies follow the journey from diagnosis to death and through bereavement. It iden-
tifies 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 healthcare 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
that 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 tool used predominantly to identify the
changing functional status of cancer patients. Known as the Palliative Performance
Scale version 2, the PPSv2 is used throughout the book as a guide to suggest
key psychosocial issues that occur at particular transitions in a patient’s disease
process (Downing, Wainwright, & Victoria Hospice Society, 2006). 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, im-
prove communication among healthcare providers, and identify relevant psycho-
social interventions.
In the bereavement chapters, information is presented from an integra-
tive perspective that draws from a number of theoretical models and clinical
approaches.
This book may be used as a reference or clinical handbook. It is divided into
10 chapters that encompass patients’ and families’ journeys through diagnosis,
treatment, and recurrence (Chapters 2 and 3); end-of-life care (Chapters 4, 5, 6,
and 7); and bereavement (Chapters 8, 9, and 10). Information about children and
youth is included in Chapters 2, 4, 8, and in the Perspective “Dying Children and
Youth.” This is not intended to compartmentalize the concerns of children and
youth, 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 transi-
tion, 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 or family context. Basic components include
 Signposts  D  xxi

(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 pro-
vide psychosocial care to patients, families, and other team members at the
transition that the chapter discusses.
• Team Issues: Presents some of the major challenges or difficulties that com-
monly confront healthcare providers in their work with patients, families, and
each other.
• Summary: Places the transition in each chapter within the perspective of the
Palliative Performance Scale or integrative bereavement approach.
• Learning Activity: Offers activities and exercises that may be used for teach-
ing or team building to stimulate thought and introspection as well as help
readers to integrate the information into their knowledge and practice.
• Resources: Provides suggested articles, books, websites, and other resources
that readers can consult for further information. Resources are gathered by
chapter at the back of the book.
• References: Lists specific references for quotes or other references used with-
in the chapter. References are gathered by chapter at the back of the book.

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. These are strategically placed between chapters
and include their own Resources and References.
• 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 challenging to deal with.
• Sidebars/Insights/Reflections: Contains peripheral but important infor-
mation that add depth to the material discussed in the main text of the
chapters.

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. Personal stories,
expertise, and insights are presented to inform and inspire others to achieve high
standards of psychosocial care. We hope that a framework for what is predict-
able and typical will emerge by identifying the particular issues that patients
and families may face at certain transitions. While acknowledging the unique
experience of every patient and family, the intention of this framework is to
describe the psychosocial needs and concerns shared by many and offer pal-
liative care and bereavement providers a “place to start.” Understanding and
integrating both aspects will support excellence in patient-centered and family-
centered care.
xxii  d  Introduction

LEARNING ACTIVITY

The purpose of this activity is to increase awareness and insight into the
highly personal, often surprising ways, that people become involved in
hospice palliative care. This activity may help to build rapport and in-
crease understanding within groups of healthcare providers, volunteers,
and others.
At a staff meeting, retreat, or training session, form small groups or
pairs and ask each other these questions:

• What brought you to this work/organization?

• What impact does this work have on your life (negative and positive)?
• How would your friends or family say this work has changed you?