Documenti di Didattica
Documenti di Professioni
Documenti di Cultura
IN DYING AND
BEREAVEMENT
A Psychosocial Guide for Hospice and Palliative Care
2 nd
Edition
by
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.
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.
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.
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).
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:
• 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.
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: