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Preface

I have been given the privilege of writing the Preface for this wonder-
ful work, The Hospice Team: Who We Are and How We Care.
Hospice is a carve-out of the Medicare benefit. In 1983, monies
were set aside to pay for the care of Medicare recipients who had a
terminal diagnosis and who chose comfort care in their home or other
place of residence (skilled nursing facility, assisted living). It seemed
intuitive that people at the end of life would choose quality over quan-
tity and, if given the support and care necessary, to stay home. In the
1980s, most hospices were voluntary organizations. Once hospice
became a Medicare benefit, many of these organizations developed
into more structured programs. With money, they could hire chaplains,
social workers, nurses, and other professionals who became what is
now known as the interdisciplinary team.
The interdisciplinary team is the cornerstone of care at the end
of life and comprises multiple professionals who bring their expertise
to bear in formulating a plan of care for patients and their families.
In hospice, we care not just for individual patients, but also for an
ever-expanding group of concentric circles made up of family, friends,
and others whose lives are affected by the individual’s illness and
approaching death.
The Hospice Team is written from the standpoint of different
members of the interdisciplinary team: physicians, nurses, certified
nurse assistants, social workers, music therapists, volunteers, bereave-
ment counselors, and chaplains. Each of us offers a unique perspective
on the work we do and why we do it. Some of us wrote about what
drives us to do what we do and how we chose to work in hospice; some
of us describe in detail what our job entails. But we all bared our souls
and tried to show what drives us to care for terminally ill people.

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It is not sad work, although we encounter many sad situations. We


do not help anyone get better, but that is also not how we measure our
success. If we lessen the pain of a symptom. If we facilitate closure or
one more conversation. If we help an individual maintain dignity by
keeping him or her clean. If we can care for someone through the night
so a family can rest. If we can make a positive impact, knowing that we
cannot change the outcome, we have done our jobs. That is what keeps
us coming back. We are not in the business of healing. We are in the
business of alleviating suffering.
Palliative medicine, the specialty we are trained in to work in hos-
pice, is the only specialized form of care that requires empathy and
thinning of the boundaries. While we have a hefty armamentarium
of medications with which to relieve symptoms, empathy is our most
important tool. The founder of the modern hospice movement, Dame
Cicely Saunders, believed that knowing when death is approaching,
rather than a curse, is a gift. It is an opportunity to prepare spiritually,
to make arrangements, and to achieve closure. That is why we have
chaplains and social workers.
As you read through this book, you will find very unique stories of
individuals who came to this specialty for varied reasons. What ties us
all together is a unanimous desire to help alleviate suffering at a very
vulnerable time. It is almost like a calling.
I am honored to have been asked to contribute in small part. I am
also in awe of my interdisciplinary team colleagues who poured their
heart into this work.
I believe you will get more than just a glimpse of the work we do.
You will see why we choose to care for people at their most vulnerable
and what it takes to do so.

Faustino Gonzalez, M.D., FACP, FAAHPM


Chief Medical Officer, Trustbridge Health
Introduction

Chaim J. Wender, D.Min., F.LBC


Patricia E. Morrison, LCSW

The modern hospice movement is relatively young in the world of


contemporary medical care. The first hospice, in England, was founded
only fifty years ago in 1967, when Dame Cecily Saunders established
the St. Christopher Hospice, calling it both a hospital and a home. It is
still cited by many as the model for compassionate and quality hospice
care. The first hospice in the United States was founded seven years
later in 1974.
Perhaps a reflection of the relative newness of the hospice
movement is the reality that hospice literature is rather limited and
misconceptions about hospice abound. Of course, there is also an
understandable preference of the human mind and emotions to focus
on the brighter and lighter dimensions of the life experience, such as
youth and good health, glamour and wealth, and recreation and enter-
tainment. Nonetheless, the realities of human existence do include
frailty and illness and suffering and mortality. With due modesty, we
offer this book with a view to redressing a measure of that imbalance.
We would do well to bear in mind some demographic realities
in the United States. In 1983, Dr. Robert C. Atchley, then Director
of the Scripps Gerontology Center at Miami University in Oxford,
Ohio, wrote in a visionary manner in his book, Aging: Continuity and
Change, that “ . . . the growth of the older population and the aging of
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the older population, in America, will produce significant increase in


demand for all kinds of health services.” He also aptly noted “the popu-
lation explosion of older Americans.” According to U.S. Census Bureau
figures, the national population of people over the age 65 was rapidly
approaching 50 million as of 2016. As the aging population increases,
so, we suggest, does the need for hospice services.
What is hospice?
Hospice is distinctive among modern medical disciplines.
Hospice is not simply a place. It is a concept and a service that
goes with the patient in accordance with his or her needs at a given
time.
Hospice can be provided in a private home, in an assisted liv-
ing facility, in a skilled nursing facility, or in an inpatient unit, as in a
hospital.
To qualify as a hospice patient, an individual must be diagnosed,
by a qualified physician, as having a terminal prognosis of six months
or less.
Hospice provides a multifaceted umbrella of care that involves
many caring and compassionate individuals who represent a varied
array of qualifications, credentials, specializations, and experiences.
Though we do not anticipate a conventional medical cure for
someone in hospice, those who work in hospice are not without hope.
Rather, ours is a reframing of hope. Our realistic hopes range from the
lessening of pain and suffering—physical, spiritual, emotional, and
familial—to the increase of comfort in these same areas.
The twenty-one contributors to this book are all veterans of hos-
pice service. They also reflect the cultural diversity that characterizes
hospice personnel: women and men; African American, Asian, Filipino,
Hispanic, and Caucasian; Catholic, Protestant, and Jewish; young (in
their twenties), middle-aged, and older (in their seventies); profession-
als and volunteers. In this book, we have endeavored to assemble a
representative sampling of an interdisciplinary team approach to caring.
We convey the types of caring those who comprise the hospice team
provide and the variety of skills that are brought to bear in serving
the needs of the hospice population, both patients and their families.
Among these pages the contributors also share memorable interactions
they have had with hospice patients and family members. Of course,
in compliance with the regulations of the Health Insurance Portabil-
ity and Accountability Act (HIPAA), the names of patients and family
members have been replaced with pseudonyms.
Introduction 3

Here, in their own words, the various contributors provide us with


insights into their personal backgrounds, their educational and career
histories, and what motivated them to become associated with hospice.
One noteworthy commonality is that a number of the contributors have
themselves experienced the death of a loved one. They are either grate-
ful for the positive impact hospice personnel had on those dearest to
them, or they express regret that hospice personnel and services were
not called upon in their family member’s time of need.
This book focuses on the words and the deeds of a broad spectrum
of hospice personnel who provide care on a daily basis (and around
the clock) for patients and their family members: physicians, nurses,
certified nursing assistants, social workers, chaplains, music thera-
pists, bereavement counselors, integrative therapists, and volunteers.
These hospice personnel are “in the trenches” and are the frontline
faces, voices, and helping hands of hospice throughout the concluding
journey of life.
It must certainly be emphasized that there are many others
without whom hospice would not be viable, including administrators,
admissions staff, business representatives, educators of hospice staff
and the general community, pharmacists, information technology spe-
cialists, those who deliver and set up durable medical equipment in
patient homes, and those who deliver supplies to the hospice inpatient
units. Although they are beyond the scope of this text, we surely also
salute these individuals for their devotion to such a worthy cause.
From the outset, it should be noted that among the many miscon-
ceptions about hospice is that euthanasia, mercy killing, or deliberate
overdose of medications are permitted. In actual fact, any such prac-
tices would be regarded as diametrically opposed to hospice philoso-
phy and practice. As will become evident throughout the pages of this
book, the goals of hospice are to enhance the comfort and quality of
life of our patients and, by extension, of those who are closest to them.
We acknowledge the likely inevitability of death among those who are
deemed to be terminally ill, but we do not hasten their demise.
It may also be thought remarkable, as well as heartening, that
so many of the contributors to this book regard their service within
hospice as a genuine privilege. They truly love what they each feel they
have been called upon to do—in spite of the sadness, the fear, and the
urgency that are so much a part of hospice.
It is also worthy of note that the voices of hospice personnel are
often voices of deep and abiding faith. Perhaps spiritual belief is indeed
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a source of the fortitude of many who deal with ultimate issues of


death and dying every day. Perhaps spiritual belief enables them to
draw forth and share the peace and serenity, the comforting presence
and calm, that they must manifest day in and day out.
Finally, when we consider the acronym of TEAM in relation to
hospice personnel (namely, Together Everyone Achieves More), the
awareness that one is not working alone or in isolation, but rather is
part of a highly motivated, competent, and caring team, is surely also a
source of strength for our dedicated hospice clinicians and volunteers.
It is our earnest and heartfelt hope that those who read the pages
of this book will find it to be both informative and inspiring.