Oxford Textbook of Palliative Social Work Oxford Textbooks in Palliative Medicine 1st Edition Ebook PDF
Oxford Textbook of Palliative Social Work Oxford Textbooks in Palliative Medicine 1st Edition Ebook PDF
Oxford Textbook of Palliative Social Work Oxford Textbooks in Palliative Medicine 1st Edition Ebook PDF
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Acknowledgments xxv
Contributors xxvii
Section I @£
Historical Context
. Social Work and Palliative Care—
The Early History
Dame Cicely Saunders
Section II @£
Social Work Practice: Setting Specific
. Palliative Care Consultation
Colleen M. Mulkerin
vii
viii Contents
. Social Work and Palliative Care in Hospice . Sexuality, Sensuality, and Intimacy in
Sherri Weisenfluh Palliative Care
Les Gallo-Silver
. Pediatric Hospice and Palliative Care: The Invaluable
Role of Social Work . The Social Work Role in Pain and Symptom
Stacy F. Orloff Management
John G. Cagle and Terry Altilio
. Home-Based Palliative Care
Elena Davis-Stenhouse, Kennan Moore, and Becky Niemeyer . The Whys and Wherefores of Support Groups:
Helping People Cope
. Palliative Care in Long-Term Care Facilities
Nancy Sherman
Mercedes Bern-Klug and Kelsey Simons
. Social Work and Technology: The Software and Hard
. Palliative Care for Veterans
Drive of Patient and Family Care
Louisa Daratsos
Katharine M. Campbell
. Special Considerations in Rural and
. Bereavement in the Beginning Phase of Life: Grief in
Inner-City Areas
Children and Their Families
Richard B. Francoeur, Susan A. Murty, and Bernice Sandowski
Nancy F. Cincotta
. Clinical Trials and the Role of Social Work
. Holding On and Letting Go: The Red Thread of
Karlynn BrintzenhofeSzoc
Adult Bereavement
. Key Roles for Palliative Social Work in Susan Gerbino and Mary Raymer
Correctional Settings
John F. Linder and Sheila R. Enders Section IV @£
Population-Specific Practice
Section III @£
. The Collaboration of Palliative Care and Oncology
Social Work Practice: Screening, Assessment,
Social Work
and Intervention
A. Marlene Lockey, Diane Benefiel, and Margaret Meyer
. Screening, Assessment, and a Problem-Solving
. Palliative Care in Chronic Kidney Disease
Intervention for Distress
Teri Browne
James R. Zabora
. Emerging Opportunities for Palliative
. Mental Health Risk in Palliative Care:
Social Workers
The Social Work Role
Robin Rudy Lawson and Kelly M. McHenry
Katherine Walsh and Susan Hedlund
. Social Work, HIV Disease, and Palliative Care
. Addressing Suffering in Palliative Care: Two
William Goeren
Psychotherapeutic Models
Lissa Parsonnet and Carrie Lethborg . Palliative Care with Vulnerable Populations
Sarah Gehlert and Teresa Moro
. Spirituality and Social Work Practice in
Palliative Care . Palliative Care with Lesbian, Gay, Bisexual, and
Dona J. Reese Transgender Persons
Kathryn M. Smolinski and Yvette Colón
. Discovering Strengths and Growth in
Palliative Care . Social Work in Pediatric Palliative Care
Susan Cadell, Sheryl Shermak, and Meaghen Johnston Barbara L. Jones, Stacy S. Remke, and Farya Phillips
. Caregivers in Palliative Care: . Palliative Social Work with Older Adults and
Roles and Responsibilities Their Families
Myra Glajchen Daniel S. Gardner
. Social Work and Psychology . Palliative Social Work in Canada
Becky A. Anderson, Louise E. Marasco, Julia Kasl-Godley, and Susan Cadell and Harvey Bosma
Sheila G. Kennedy
. Palliative Social Work in Central-Eastern Europe:
. Social Work, Fund-Raising, and Philanthropy: The Emerging Experience of Romania
It’s Not Just about Money Csaba L. Dégi
Laura Benson and Carolyn Messner
. Palliative Social Work in Buenos Aires,
. Social Work, Self-Advocates, and Users of Argentina
Palliative Care Elena D’Urbano
Peter Beresford and Suzy Croft
. Australian Palliative Social Work
. Social Work and Pharmacy Julie Garrard, Julie Greathouse, Sue Hearn,
Maura Conry, Christopher M. Herndon, and Diane R. Jackson and Patricia McKinnon
. Social Work and Child Life: A Family’s Journey with . Palliative Social Work: An African Perspective
Childhood Cancer Jennifer Jane Hunt and Valerie Maasdorp
Ellen Goldring and Judith Solomon
. Palliative Care: An Indian Perspective
. Social Work and Psychiatry Aarti Jagannathan and Srilatha Juvva
Jimmie C. Holland and Anne Martin
. Palliative Social Work in Japan
. Social Work and Creative Arts Therapy Services Yukie Kurihara
John Mondanaro and Stacey Needleman
. Palliative Care in the Chinese Context:
. Social Work and Physician Collaboration in An Integrated Framework for Culturally
Palliative Care Respectful Practice
J. J. Nadicksbernd, Kathryn Thornberry, and Pamela Pui Yu Leung and Cecilia Lai Wan Chan
Charles F. von Gunten
. Palliative Social Work in Singapore
. Social Work and Nursing: Creating Effective Cheng Wan Peh and Tzer Wee Ng
Collaborations in Palliative Care
. Palliative Social Work in the
Holly Nelson-Becker and Betty R. Ferrell
United Kingdom
. Social Work and Speech Pathology: Supporting Malcolm Payne and Margaret Reith
Communication in Palliative Care
. Palliative Social Work in Israel
Robin Pollens and Marie C. Lynn
Shlomit Perry
. Social Work and Genetics
. Selected Issues in Palliative Care among East Jerusalem
John M. Quillin, Jaclyn Miller, and Joann N. Bodurtha
Arab Residents
. Teamwork in Palliative Care: Social Work Role with Hanan Qasim
Spiritual Care Professionals
Donna L. Soltura and Linda F. Piotrowski Section VII @£
. Social Work and Bioethics: Enhanced Resolution Ethics
of Ethical Dilemmas and the Challenges . Ethical Considerations in Palliative Care:
along the Way An Overview
Gary L. Stein and Jeanne Kerwin
Patricia O'Donnell
. Social Work and Volunteers . The Social Work Role in Decision Making: Ethical,
Wendy Walters and Dennis E. Watts
Psychosocial, and Cultural Perspectives
Tracy Borgmeyer
Section VI @£
. Advance Directives from a Social Work
Regional Voices from a Global Perspective
Perspective: Influence of Culture and
. The Need for Global Capacity Building for Family Dynamics
Palliative Social Work Karen Bullock
Rebecca S. Myers and Elizabeth J. Clark
. Pediatric Palliative Care Ethics and
. Palliative Care, Culture, and the Pacific Basin Decision Making
Linda Anngela-Cole, Lana Sue Ka‘opua, and Yvonne Yim Hollye Harrington Jacobs
x Contents
. Social Work’s Ethical Challenge: Supporting the . Social Work Research Agenda in Palliative and
Terminally Ill Who Consider a Hastened Death End-of-Life Care
Tracy A. Schroepfer, John F. Linder, and Pamela J. Miller Guadalupe R. Palos
. Palliative Sedation: A View through the . Merging Research and Clinical Practice
Kaleidoscope Debra Parker Oliver and Karla T. Washington
Terry Altilio
. Quality Improvement and Organizational
Change
Section VIII @£ Barbara Ivanko
Professional Issues
. Public Policy in Palliative and End-of-Life Care
. Navigating in Swampy Lowlands: A Relational Judith R. Peres
Approach to Practice-Based Learning in
. Self-Care as Best Practice in Palliative Care
Palliative Care
Elizabeth J. Clark
David M. Browning and Susan Gerbino
. Legacy Building: Implications for Reflective
. Enhancing Professionalism, Leadership, and Advocacy:
Practice
A Call to Arms
Shirley Otis-Green
Mary Raymer and Gary Gardia
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I began my career-long admiration of social workers with the or the culture of social work but I do know that their pres-
start of my nursing career on an oncology unit. My initial ence offers a consistent focus on patient and family needs,
years in oncology as a new graduate were in many ways best and is the embodiment of advocacy and a passion for whole
described as total chaos. Patients were very ill and the evolv- person care. Social workers are often the conscience of an
ing field of oncology was struggling to develop use of chemo- organization, the moral voice and the advocates for justice
therapy, radiation therapy and to develop both inpatient and and compassion amidst an ever burdened system of care.
outpatient services. The field of palliative social work has emerged parallel to
Aggressive surgical techniques included drastic surgeries palliative nursing. It has been my privilege to witness the
for patients such as radical mastectomies, incredibly invasive development of palliative social work, largely by observing
head and neck surgeries amid a care system that was ill pre- the enormous commitment and passion of the two editors of
pared to manage the tremendous physical and psychological this textbook, pioneers Shirley Otis-Green and Terry Altilio.
burdens on patients and families resulting from this emerg- My own passion and commitment has been inspired by
ing field of care. observing their tireless efforts to advance palliative social
In the midst of this chaotic and overwhelming world of work.
oncology I was introduced to social work. These profession- In my colleague Nessa Coyle and I published the
als were quite simply the calm in the storm. The oncology first edition of the Textbook of Palliative Nursing. I realized
social workers were tranquil yet strong patient advocates; then the importance of a book for a field. Far beyond a
they were focused on the person and family surrounding the collection of chapters, a major Textbook represents the col-
tumor and in many ways the social workers represented a lective wisdom of a field; it sets the standard of what excellent
solid anchor and in a clear sense of humanity in an environ- care should look like and it holds all its members to a higher
ment otherwise void of such qualities. plane of practice.
From those early years, I learned a key lesson for survival Terry Altilio and Shirley Otis-Green have made a major
as a nurse: Stay close to the social workers. I also learned that professional contribution in the publication of this book. It is
these social workers were equally attentive to nurses and a work of art, quite fitting for the profession of social work,
other staff and that their influence extended to the broader which is indeed a science and an art. The breadth and depth
systems of care. I observed that the common nursing or of content in this Textbook are monumental. They have
medical response amidst a crisis (a dying patient, an angry defined the field and in doing so, there is no turning back.
spouse, a dysfunctional family) was generally, “Has anyone
called the social worker”? Betty R. Ferrell, PhD, MA, FAAN, FPCN
In my own professional career journey to focus on pallia- Research Scientist
tive care, I have remained impressed by my social work col- City of Hope Medical Center
leagues. I don’t fully understand the professional preparation Duarte, CA
xi
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f o r e wo r d b y kat h l e e n m . f o l e y
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For all of those who have worked to build the interdisciplin- team learned how to address and care for patients’ and fami-
ary field of hospice and palliative care, the role of the social lies’ psychosocial needs from her.
worker is recognized as central to our overarching goal of The book begins with an historical perspective, which
providing humane compassionate and competent care to sets the stage for understanding how palliative care became a
patients and families with life-limiting illnesses. focus for social work practice and research. This section
This textbook marks an important stage in emphasizing points out the challenges, struggles and current opportuni-
the role of the social worker in palliative care. It sets the stan- ties for social work‘s role in advocacy, treatment, care and
dard for the practice of palliative social work. Through its support for patients with life-limiting illnesses.
chapters, it defines a body of knowledge that outlines the Numerous chapters focus specific attention on the core
field, describes its core curriculum and emphasizes its pro- competencies in training the social worker in palliative care;
fessional development. others describe the various settings and disease specific pop-
The editors, Terry Altilio and Shirley Otis Green, are two ulations which invite social work expertise and which help to
professionals who bring to this task a breadth and depth of define their scope of practice. These chapters point out the
social work practice that is unparalleled. They have walked wide range of opportunities for improving palliative care be
the walk and talked the talk. As practitioners and educators, it in the hospital, the hospice, the nursing home, the prison
they have helped to build the field and shape its domains. or the rural community. On the global perspective of pallia-
Their clinical experience, teaching and research efforts tive social work, a range of chapters by international faculty
provide the critical background knowledge for framing the describe a rich array of culturally sensitive variations in social
body of information that comprises the field of palliative work practice in palliative care.
social work. All of the chapters in the textbook are authored by experts
They have both modeled the role of the social worker in in their topic area. Their writings reflect both a practical and
interdisciplinary teams and in collaborative practices. They theoretical knowledge of what are the important facts to
have team taught and led major educational efforts. Both know to provide palliative social work services.
have been in leadership positions in various organizations This textbook has sufficient breath and depth that allows
and have played important roles in supporting the develop- new social work students to learn the history and the basics
ment of standards in palliative social work and in advocating of palliative social work and the expertise to refresh their
for formal certification programs. Both were supported as knowledge and learn the field’s potential, growth, develop-
social work leaders in the Project on Death in America whose ment, international policy impact and future direction.
focus was to transform the culture of dying in the United Professional and ethical issues are represented well and
States. Terry Altilio was our social worker on our Pain provide for the reader clear, balanced discussions of the
Service at Memorial Sloan-Kettering Cancer Center and our challenges and complexities of caring for patients who are
xiii
xiv Foreword by Kathleen M. Foley
dying, coming to terms with a fatal illness, or trying to resolve of palliative care and clearly describing the contributions and
complicated grief and bereavement issues. the role of the social worker and the domains of palliative
Providing palliative care for all of those who need it is a social work.
daunting task. Such care requires an interdisciplinary team
and the social worker is an essential team member. This Kathleen M. Foley, MD
textbook is a compendium of information that is authorita- Professor of Neurology, Neuroscience
tive, comprehensive and readable. It describes the elements & Clinical Pharmacology
of the field’s core competencies and also the challenges Weill Medical College of Cornell University
of research, professional development and the integration of Attending Neurologist
palliative care into health care policy. It joins two other Memorial Sloan-Kettering-Cancer Center
Oxford Textbooks—in palliative medicine and nursing— Medical Director, International Palliative Care Initiative
expanding the body of knowledge and expertise in the field Open Society Institute
foreword by russell k. portenoy
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Whether driven by a sense of shared purpose to redress a the constructs that would provide a strategy for change were
distortion in medical care, or simply a sense of satisfaction lacking for many years.
that comes with helping others, health professionals of all The term “palliative care” also entered the health-related
types have begun to flock to the discipline of palliative care. lexicon in the s, but there was no clear definition appro-
In so doing, they are creating a great wave of good around priate for the US system, the goals and objectives were not
the world. In many dozens of countries, professional caregiv- evident to most practitioners, and the distinctions between
ers have awakened to the importance of a competent and palliative care and the US version of hospice as a separate
compassionate approach to patients with serious illness, and system for end-of-life care were indistinct. For most health
have targeted the delivery of high quality care to a set of pri- professionals working in hospitals or in the community, the
mary goals, including the relief of suffering, lessening of ill- criterion that gave meaning to both these labels was the
ness burden, and retained quality of life, that have become imminence of death and not the clinical need for manage-
the cornerstones of good palliative care for the ill and their ment of illness burden in multiple domains. Take away the
families. challenge of “dying well,” and even the most compassionate
In the United States, the health professions are living physician, nurse or social worker was likely to doubt whether
through an exemplar experience. Following a period in the there really was a difference between palliative care and just
s during which innovators developed early models of good care of the sick.
hospice or palliative care for the dying, US activists pushed The gradual, and quite extraordinary, change in this view
the government to create a new national system of care deliv- is the context from which to understand the significance of
ery through the creation of the Medicare hospice benefit in this new tome devoted to specialist-level palliative care prac-
–. Although this benefit embodied many elements ticed by social workers. This book is more than a beautifully
of a future construct—specialist palliative care—the early edited and much needed compendium of existing knowledge
s were a time of activism at the policy level which would of theoretical and practical importance to social workers. It is
much later be accompanied by operational frameworks that yet another milestone along a path that is humanizing health
would define the specialty or position it in mainstream health care and establishing a set of specialist competencies without
care as a set of services to address the complex needs associ- which a palliative care movement in the US and elsewhere
ated with advanced illness. Hospice quickly evolved into a would wither.
very large and effective system for end-of-life care. The hos- In the US, there have been many small but momentous
pice industry serves more than one million patients and steps along this path. Even as the Medicare benefit was the
families each year, garners extraordinarily high rates of satis- impetus for the development of a billion dollar industry to
faction by the families it touches, and saves the health system provide an interdisciplinary model of care for dying patients
money. It has, however, remained largely outside of the main- at home, expert committees were impaneled to define pallia-
stream health care system, usually accessed when death is tive care. Each of the US definitions, from the Institute of
less than a month away and disease-modifying therapies are Medicine to the National Quality Forum, complemented
stopped. The dedicated professionals who work in this US those created by the World Health Organization and other
version of hospice have long understood that hospice international and national groups. All emphasized a set of
needs integration into the larger system of health care, but core values and concerns targeting patients with any type of
xv
xvi Foreword by Russell K. Portenoy
serious life-threatening illness and their families. It refers to model of care and incorporate elements into practice when-
patient-centered and family-focused care that addresses ever a patient with a serious or life-threatening illness
complex needs in any of the multiple domains that are requires treatment. All clinicians who provide services to
affected by illness. It is care that is needed throughout the patients with serious or life-threatening illness should have
continuum of disease and in every venue of care. It overtly generalist-level skills in palliative care. They should under-
helps to define the goals of care and does so in the broadest stand and embrace the broad tenets of this discipline and
terms, incorporating the objective of disease control to pro- perform core aspects, such as a multidimensional assess-
long life and limit the impact of pathology, but considering ment. Each of these professionals can promote elements of
the appropriateness of this care when risks and burdens and good communication, such as advance care planning, or
true benefits are acknowledged. Medical decision making is offer specific interventions that may address problems that
grounded in culture and ethics, and refracted through the undermine quality of life. Each should understand how to
individual prism formed by the life experiences and the refer to other professionals or programs.
values, preferences and wishes of the patient and family. Generalist-level palliative care should be supported by
Once the definition and the clinical objectives of palliative systems of care, such as hospitals and nursing homes. These
care were articulated, the important role of hospice became facilities can be encouraged to adopt specific programming,
clearer and the need for better palliative care upstream from such as quality or performance improvement projects, patient
end-of-life became evident. Two simple observations pro- or family education, or programs that reduce disparities
vided subtext for this realization: Estimates of survival do related to language or culture. They should provide for acces-
not correlate well with clinical need, and in any case, prog- sible specialist services, like hospice.
nostication is too inexact to rationalize access to care. Pallia- Consensus about the parameters of generalist palliative
tive care has become understood in the US as a model that care illuminates the nature of specialist care. More than
supports the physical, psychosocial, and spiritual well being years ago, the federally-mandated hospice model required an
of the patient and family throughout the course of a disease interdisciplinary team for care delivered in the community,
that could require many years to progress. The focus on a presaging an essential element of specialist practice. Special-
clinical response to active dying is necessary, but not suffi- ists always try to work in teams, the core of which is the phy-
cient to address the burden of illness and its treatment. From sician, the nurse, the social worker and the chaplain. Each
diagnosis onward, the goals of care must be broadened to member of the specialist team relies on the knowledge and
encompass expert symptom control, empathic and effective skills of the others; ideally, each should have the advanced
communication, management of psychological and psycho- study, mentored training, and experience that are the foun-
social distress, help for spiritual and existential concerns, dations for specialist care. Together, the team offers continu-
practical assistance and coordination of care, and other strat- ous and comprehensive care with a level of sophistication
egies to address the complicated and changeable scenario of and expertise that can handle complex problems and multi-
illness. Palliative care accepts both the inevitability of death ple sources of distress in any type of patient or family, in any
and the powerful desire to forestall it. When the disease venue of care. Although palliative care is inarguably not just
is advanced and death is anticipated soon, palliative care end-of-life care, it is the setting of advanced disease and
acknowledges the potentially special nature of the care imminent death that often brings the type of complexity in
required by the patient or the family. goal setting and communication, and the management of
In the U.S. and a small number of other countries, this symptoms and other sources of distress, that calls for the
process of definition gradually overwhelmed an emerging input of experts. In the US, institution-based palliative care
controversy about the nature of palliative care—is it just good teams rapidly evolved and now mirror in many hospitals and
care, or is it something else? If palliative care is best under- nursing homes the interdisciplinary approach to care for the
stood as a therapeutic model targeting diverse populations dying pioneered by hospice.
with serious or life-threatening illnesses and pursued by The nature of specialist care places a very high value on
diverse health professionals with common goals, it is undeni- professionalism. Indeed, it is the commitment to profession-
ably part of the good care that should be offered by any pro- alism that may be one of the key drivers of the palliative care
fessional, a best practice for physicians, nurses, social workers movement in the United States and other countries. “Profes-
and others. This does not negate the alternative view, how- sionalism” connotes an identity, supported by membership
ever. With validity endorsed by the success of the hospice in a group defined by devotion to a core set of attitudes, deep
industry, it is now axiomatic that some patients and families knowledge, and a special set of skills. In health care, it implies
also need care delivered as a specialist practice by profession- a commitment to lifelong learning, quality work derived
als with advanced training and specific resources. from standards of care, support for rational care based on
The conceptualization of palliative care as a model that evidence, and the promise of integrity and ethical practice.
may be viewed through a lens that distinguishes generalist Professionalism in the health professions also embraces
from specialist practice has had profound implications. It the convention of certification. A certificate, earned by
suggests to all types of health professionals that there is an demonstration of knowledge and experience, is a tangible
affirmative obligation to understand the basics about this indicator that a discipline has defined itself, that committed
Foreword by Russell K. Portenoy xvii
practitioners exist, and that high standards will be applied as it Seventeen years following the publication of the first edi-
evolves. In the US, the adoption by the American Board tion of the Oxford Textbook of Palliative Medicine, Altilio
of Medical Specialties of a new medical subspecialty—Hospice and Otis-Green have a similar accomplishment in producing
and Palliative Medicine—gave new weight to the discipline for the Oxford Textbook of Palliative Social Work. It is a signal
physicians. For these professionals, there was immediate to the broader professional community that palliative social
mainstreaming, based on a long list of competencies that work—specialist-level care provided to patients and families
implicitly distinguished generalist from specialist care. by social workers with specialist knowledge and competen-
The acceptance of Hospice and Palliative Medicine as a cies—is a reality. This book will add to the momentum for a
medical subspecialty has been a very important milestone formal specialty, support the professionalism of those already
along the road to full integration of palliative care into the involved, and inspire younger colleagues to enter the field.
US system. It followed many positive events, which together Certainly important as a clinical resource, its good is likely to
gave support to an early vision of this change. Among these extend far beyond this, providing another essential step in
events were the earlier acceptance of palliative medicine’s the slow but inevitable shift in the priorities of a health care
specialty status in United Kingdom and then several other culture that remains in need of change.
countries, and the rapid growth of a medical literature
devoted to the competencies required to specialize in this Russell K. Portenoy, MD
field. It was fitting that the first medical textbook devoted to Chairman, Department of Pain Medicine
palliative medicine, the Oxford Textbook of Palliative Medi- and Palliative Care
cine, originated from the UK. Published in , this book Beth Israel Medical Center
assumed a role beyond a compendium of evolving knowl- New York, N.Y.
edge. It awakened medical professionals to an emerging and Professor of Neurology and Anesthesiology
rich literature in palliative care, and defined new medical Albert Einstein College of Medicine
reality of specialist practice by physicians.
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pre fac e
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Terry Altilio, MSW, LCSW, ACSW “I’ve a feeling we’re not in Kansas anymore” are the words
Social Work Coordinator spoken by Dorothy Gale, a curious, yearning, and adventur-
Department of Pain Medicine & Palliative Care ous young girl who, with her dog Toto, is magically trans-
Beth Israel Medical Center ported during a tornado to a strange, unfamiliar place. These
words from the novel The Wonderful Wizard of Oz (Baum,
Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C ) mark a transition from the sepia-toned landscape of a
Senior Research Specialist farm in Kansas to the technicolor, mystical Land of Oz, where
Division of Nursing Research and Education Dorothy and Toto will encounter complex characters, some
City of Hope National Medical Center gentle, some harsh, some good, and some evil, and embark
on an array of adventures infused with magic and beauty,
fear and danger, mystery and humor.
In the movie The Wizard of Oz (), based on L. Frank
Baum’s classic novel, a range of human experiences are cap-
tured through words, songs, actions, conflicts, and allegories.
For many, the story provides opportunities for philosophical
and political analysis (Dirk, n. d.). We’ve chosen the phrase
“we’re not in Kansas anymore” to introduce this text because
it marks a transition of sorts with implicit themes of self-
realization and transformation, growth and collaboration,
power and potential, loss and adaptation, magic and mystery.
The adventures of Dorothy and Toto seize our attention
because they involve unique characters, including witches,
the Scarecrow, Tin Man, Lion, and the Wizard of Oz, who in
curious ways synthesize necessary attributes of palliative
care. The characters and their evolution serve as symbols for
processes implicit in palliative social work, in the building of
this text, and in the learning experience we have worked to
create within these pages.
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Themes and Characters
xix
xx Preface
long been central to the focus of social work: the existential hopes, dreams, and self-realization. Of course, the trek is not
and emotional experience of feeling “unheard.” Dorothy is without obstacles, danger, and challenges. Negotiations are
rebuffed by the adults who surely care for her but are other- necessary, hopes are enhanced and expanded, and the
wise preoccupied. She chooses to run away both to save her Wizard, while initially devious and insincere, eventually
dog Toto from potential harm and in reaction to having her assists Dorothy and her colleagues to search for and discover
fears and worries delegitimized and her needs minimized. their internal resources and abilities. Perceptions are reframed
This theme of acknowledging the vulnerable and advocat- so that the pursuit for a brain stretches beyond an anatomical
ing for the needs of those who are unseen and unheard is organ to the process of critical thinking, the need for a heart
pervasive throughout social work. Many persons who benefit extends to the capacity to love and be loved, and pursuit for
from palliative services are vulnerable consequent to illness courage is woven with wisdom.
and the myriad of related bio-psychosocial-spiritual factors It is the intent of this text to integrate knowledge, thought-
that impact their experience. This text reflects a focused fulness, heart, compassion, and courage as central compo-
voice for the profession and the populations that we serve—a nents of palliative social work and to invite social workers to
voice asserted through the writings and lived experiences of build on practice principles and values that are foundational
over authors. and fundamental to this specialty. We invite readers on a
This theme of impacting the lives of those with soft voices journey to discover how the richness and depth of a sepia-
continues into the Land of Oz when Dorothy, through no toned world blends with the vibrance and excitement of tech-
conscious effort of her own, influences the social and exis- nicolor. “We’re not in Kansas anymore” is an invitation to
tential experience of “little people” who have been enslaved honor and assimilate the range of concepts and values that
by the powerful Wicked Witch of the West. Dorothy’s house, are embedded in social work and palliative care and reflect
lifted by the tornado, drops and ends both the life of this that integrated experience in the manner in which we serve
witch and her tyrannical powers. This precipitous death patients and families.
results in an unintended and unplanned consequence: The
previously enslaved “little people” are freed and look to Dor-
othy as their heroine. This multidimensional and highly @£
symbolic event is followed by the emergence of witches, both Blending: Sepia and Technicolor
good and evil, who bring both guidance and threat to the
world of Dorothy and Toto. It is in this complex setting of We are privileged to present the Oxford Textbook of Palliative
death, liberation, revenge, and serendipitous events that Dor- Social Work as a companion volume to the classic Oxford
othy begins to long for the comfort of her home and her care- Textbook of Palliative Medicine and the Oxford Textbook of
givers, Auntie Em and Uncle Henry. She is guided by Glinda, Palliative Nursing. This important addition to Oxford Uni-
a benevolent witch, and begins the trek down the yellow versity’s library of definitive palliative care textbooks reflects
brick road in enchanted ruby red slippers to fulfill dreams the unique synergy of palliative care and the social work pro-
and aspirations and seek the omniscient Wizard of Oz. Living fession, while honoring the interdisciplinary sharing that is
in Emerald City, the Wizard purports to have mysterious fundamental to excellent care for patients and families. The
powers that may transport Dorothy and Toto back to Kansas, need for this text grew concurrently with the global prolifera-
to the familiarity and comforts of home. tion of palliative care and hospice programs, where social
The “yellow brick road” seems an appropriate metaphor workers provide culturally respectful psychosocial-spiritual
for the evolving journey of social work into palliative care, care for patients and families across a variety of settings and
while the magical “ruby slippers” are a symbol of endless throughout the life span (Cadell, Johnston, Bosma & Wain-
potential to influence the care for patients and their families right, ). It joins respected authors, educators, research-
and the systems which are intended to serve them. The blend ers, and practitioners to create a volume that integrates the
of the comforts implicit in Dorothy’s longing for home and best theory, research, and practice wisdom in a manner that
the mystery, uncertainty, and possibilities represented by both generalist and specialist clinicians and educators will
Dorothy’s beginning journey is for many a metaphorical rep- find scholarly and practical.
resentation of the illness experience that palliative care clini- Sepia tone for many evokes feelings of warmth and nostal-
cians are privileged to join. gia, compelling a response that is significantly different than
Here also is where the Oxford Textbook of Palliative Social that elicited by the vibrant colors of a technicolor world.
Work has symbolic synergy with the lives and strivings of Many photographs printed with sepia tone evoke an older
Dorothy and the companions who join her trek: the Scare- era. When our profession reflects on an “older era” we find
crow, the Tin Man, and the Lion. These allegorical figures traditions of service and advocacy on the individual, family,
represent essential aspects of clinical practice in palliative community, and policy level. Reflecting these historic roots,
care. The Scarecrow desires knowledge, the ability to think; this text focuses on individuals, their families of origin, and
the Tin Man wants a heart to experience emotion; and the families of creation, and it delineates the public policy and
Lion searches for courage. They seek the Wizard of Oz, whose ethical issues that summon our participation and challenge
power and wisdom are thought to hold the answers to their us to intervene in such aspects of care as the undertreatment
Preface xxi
of pain, access to care, and the physical and psychosocial- limited life expectancy and require comprehensive
spiritual impact of caregiving. We also see that early pioneers biomedical, psychosocial, and spiritual support as they
in social work articulated values and clinical perspectives enter the terminal stage of an illness or condition. It
that are essential to palliative care. As early as , Mary also supports family members coping with the complex
Richmond emphasized a core value of providing the patient consequences of illness, disability, and aging as death
a “fair and patient hearing” and to establish, if possible, a nears. Hospice care further addresses the bereavement
sympathetic mutual understanding (, p. ). Gordon needs of the family following the death of the patient.
Hamilton () would later point to the importance of the Of particular importance, palliative care services are
person telling his or her own story and Helen Harris Perlman indicated across the entire trajectory of a patient’s
would reinforce the idea that the client’s problem is best illness and its provision should not be restricted to the
understood from his or her own perspective (). These end-of-life phase. (NQF, p. VI)
principles are imminently transferable to palliative care
The Framework document provides the foundation upon
because they encourage clinicians to search for and listen to
which to build a quality measurement and reporting system.
the context in which illness occurs and to seek to understand
As shown in Table I., it identifies the structural and pro-
the singular experience of each patient and family upon
grammatic elements as essential to quality performance.
which to create a plan of care.
The Framework served as a guide for the development of
And what of the technicolor stimulus that set the stage for
preferred practices, derived from the NCP eight domains
the publication of the Oxford Textbook of Palliative Social
of quality palliative and hospice care. These preferred prac-
Work? These influences are many, emanating from within
tices are intended to serve as “building blocks for high qual-
the profession of social work and from the evolution of pal-
ity programs across many practice settings and as the basis
liative care as an interdisciplinary specialty. The initiative
for developing performance measures” (NQF, p. VI). (For
and advocacy for our text followed a period of intense and
more information, please see Chapter ).
exciting growth of the specialty. In , the National Consen-
The domains, guidelines, and preferred practices assist
sus Project for Quality Palliative Care (NCP) issued the second
clinicians to serve persons who are living with life-threaten-
edition of the Clinical Practice Guidelines for Quality Palliative
ing disease, responding to their needs and those of their
Care, which included the following eight domains of care, each
families, over time and transitions, working to build conti-
of which invites expert social work participation:
nuity and coherence as patients and family move through the
• Structure and processes of care experience of illness. In addition to the essential synchrony
• Physical aspects of care of social work values with principles of palliative care, the
• Psychosocial and psychiatric aspects of care profession has an existing opportunity to move palliative
• Social aspects of care care beyond health care settings into the community. For
• Spiritual, religious, and existential aspects of care example, social workers employed in senior centers may
• Cultural aspects of care easily become advocates for pain and symptom management,
• Care of the imminently dying patient assist participants who might wish to complete advance
• Ethical and legal aspects of care directives, and intervene when caregiver distress impacts
older adults and their families. School social workers who
Each domain is followed by specific clinical practice work with families where illness exists or death occurs
guidelines regarding professional behavior and service deliv- have the opportunity to intervene on an individual, family,
ery (National Consensus Project for Quality Palliative Care,
, p. ).
In , the National Quality Forum (NQF), a private Table I. National Quality Forum: Elements of Quality
nonprofit organization that aims to improve the quality of Performance
health care for Americans, endorsed, adopted, and integrated
the Clinical Practice Guidelines for Quality Palliative Care Interdisciplinary Quality assessment/
into their document A National Framework for Palliative and teams performance improvement
Hospice Care Quality Measurement and Reporting. The NQF Diverse models of Community outreach
reinforced that palliative care: delivery programs
Bereavement Administrative policies
Refers to patient and family-centered care that
programs
optimizes quality of life by anticipating, preventing, and
treating suffering. Palliative care throughout the Educational programs Information technology and
data gathering
continuum of illness involves addressing physical,
intellectual, emotional, social, and spiritual needs and Patient and family Methods for resolving ethical
facilitating patient autonomy, access to information, education dilemmas
and choice. Hospice care is a service delivery system Volunteer programs Personnel self-care initiatives
that provides palliative care for patients who have a Source: National Quality Forum, , p. –.
xxii Preface
institutional, or community level. Private practitioners will History” a critical commentary focusing on palliative care
meet clients whose histories, current realities, or futures pioneer Dame Cicely Saunders. This is followed by an infor-
involve illness-, death-, or grief-related experiences, which mative chapter on the emergence of the field by inspirational
often become the substance of therapeutic work. We hope leader Bernice Catherine Harper.
that this text, while reflecting the learning and skill required In conceptualizing the text we chose to integrate culture
of specialist providers, will also invite generalist clinicians to within the chapters to reflect the integrated nature of the
integrate an awareness of palliative social work. In this way, cultural experience of patients, families, and clinicians.
the profession actualizes a latent potential to enhance the “Patient and family narrative” is the phrase we have selected
care of patients and family members who may never require to describe the clinical situations that exemplify the work of
or request palliative care consultation. palliative social work and to emphasize the persons beyond
The technicolor world of palliative care includes specific the diagnosis and the dilemmas that they live and struggle
social work documents that are available to enrich and stan- with throughout the course of illness.
dardize practice excellence within the profession. For exam- The setting-specific section of the text sends an implicit mes-
ple, the National Association of Social Workers has established sage to practicing clinicians who might discover the potential
Standards for End-of-Life Care (NASW, a) and in col- benefits that palliative care can provide to their setting and their
laboration with the National Hospice and Palliative Care population while at the same time stimulating a reciprocal
Organization (NHPCO, ) developed a social work cre- contribution to the evolving palliative care knowledge base.
dential in hospice and palliative care (NASW, b) (for An overarching goal has been to provide clinicians, edu-
more information, please see Chapter ). In Canada, pallia- cators, researchers, and policy makers with a resource that
tive social workers established practice competencies delineates the range of screening, assessment, and interven-
through a process of national consultation that included tion skills and perspectives that inform and enrich the
developing and validating the competencies and creating a practice of palliative social work.
plan for implementation (Bosma et al., ; Kelley et al., Chapters focusing on population- and illness-specific
). Available through the Canadian Hospice Palliative practice reflect the generic and all-encompassing focus of
Care Association, these competencies are unique in that they palliative care principles irrespective of the diagnosis, age, or
evolved through a national consultation process which social circumstance of persons living with life-threatening
included interdisciplinary providers as well as recipients of illness. These chapters bring a variety of populations into
services (for more information, see Chapter ). Since the focus, including children, elders, inmates, veterans, rural
inception of the Project on Death in America Social Work and urban dwellers, and many others. Authors worked to
Leadership Awards in , there have been a plethora of delineate the challenges of each disease and the needs of
projects, documents, and research validating professional specific populations to assist readers in grasping the context
values while enhancing the technicolor landscape within in which palliative care may be helpful to patients, their
which the work of palliative care occurs (for more informa- families, the intimate network, and the larger social system
tion, see Chapters , , and ). in which they are cared for.
The collaborative practice section of the text reinforces
the essential collective nature of palliative care, sometimes
@£ shared between social workers, across disciplines, settings,
Oxford Textbook of Palliative Social Work: and systems, creating an ongoing challenge to ensure that
A Sectional Overview care is not compromised and that patients and families are
not abandoned as they move through the disease trajectory.
The Oxford Textbook of Palliative Social Work has many These chapters are co-authored with colleagues across disci-
objectives. As an inaugural edition in a specialty that is essen- plines, and we invite you to use these chapters to foster
tially interdisciplinary, our challenge has been to reflect the thoughtfulness and discussion about interdisciplinary rela-
unique social work contribution and potential while respect- tionships and to consider how teams and individuals negoti-
ing the shared and collaborative nature of palliative care. Our ate the communal aspects of the work while respecting the
primary goal was to create a text that honors the practice unique expertise of each professional. Social workers in
wisdom and compassion of social workers while simultane- health care settings have survived consequent to their ability
ously informing this work whenever possible with evidence. to share, so the challenge for our profession may be essen-
We have engaged authors with a passion for their work and tially different from that of nurses, physicians, or spiritual
specialties, some who are emerging leaders, as well as many care providers who have varied histories and relationships to
who have contributed not only to the evolution of palliative health care settings and teamwork. To this end, the collabora-
social work but also to the growth and integrity of the profes- tive practice section reflects the experiences of clinicians who
sion as a whole. With this in mind, the first section of this have worked together to provide narratives and models that
text is devoted to the historical development of social work. may serve to enhance and amplify the relationships which
Readers will find “Social Work and Palliative Care: The Early often go unexplored day after day, month after month.
Preface xxiii
The global section offers readers a glimpse into the expe- Bosma, H., Johnston, M., Cadell, S., Wainwright, W., Abernethy,
rience of patients and families living around the world and N., Feron, A., . . . Nelson, F. (). Creating social work
into the practice of the social workers who serve them. While competencies for practice in hospice palliative care. Palliative
the scope of palliative care involves interventions along the Medicine, , –. doi:./
Cadell, S., Johnston, M., Bosma, H., & Wainright, W. (). An
continuum of illness, we see in the global section that in
overview of contemporary social work practice in palliative
many places in the world limited resources force a focus on
care. Progress in Palliative Care, (), –.
the essential needs of the imminently dying and their fami- Dirk, T. (n. d.) The wizard of Oz (). Retrieved from http://
lies. The creativity, clinical work, and cultural nuance inte- www.filmsite.org/wiza.html
grated into these chapters demonstrate a richness and Hamilton, G. (). Theory and practice of social casework.
resourcefulness that emanates not from funds and budgets, New York, NY: Columbia University Press.
but from social workers passionately committed to giving Kelley, M. L., Kortes-Miller, K., Kerbashian, J., Cadell, S., Feron,
voice to their patients and families. A., Wainwright, W., . . . Thompson, M. (, May). Palliative
The ethics chapters discuss ethical principles specific to end-of-life care: A dialogue about social work practice
social work and explore various topics that infuse health care competencies and educational strategies for implementation.
debate and clinical decision making across settings, diseases, Panel presentation presented at the meeting of Canadian
Association of Social Work Educators Annual Conference
and populations. The aim of this section is to enhance
, Ottawa, ON.
critical thinking and shared decision making while acknowl-
National Association of Social Workers. (a). NASW standards
edging that the complexity and profound nature of the ques- for practice in palliative and end-of-life Care. Retrieved from
tions may provoke conflict and shared struggle, which are http://www.naswdc.org/practice/bereavement/standards/
often essential elements of authentic interdisciplinary team default.asp
practice. National Association of Social Workers. (b). Certified Hospice
The last section provides an overview of professional and Palliative Social Worker (CHP-SW) and Advanced
issues relevant to this emerging specialty with a closing chap- Certified Hospice and Palliative Social Worker (ACHP-SW).
ter that reflects the accumulated wisdom gleaned from the Retrieved from http://www.naswdc.org/credentials/credentials/
lived experiences of patients, families, and practitioners. chpsw.asp
We hope that readers will find the Oxford Textbook of National Consensus Project for Quality Palliative Care. ().
Clinical practice guidelines for quality palliative care (nd ed.).
Palliative Social Work a useful tool to navigate their own
Retrieved from http://www.nationalconsensusproject.org/
“yellow brick road.” The text is a tribute to the values and
guideline.pdf
principles that infuse the social work profession, to the National Hospice and Palliative Care Organization. (). Join
patients, their families, partners, and friends whose lives NHPCO. Retrieved from http://www.nhpco.org/ia/pages/
and experiences are represented in the narratives and to the index.cfm?pageid=
clinician wisdom presented within the chapters. Finally this National Quality Forum. (). A national framework and
is an invitation to our profession to integrate and build theory preferred practices for palliative and hospice care quality: A
and research and enhance critical thinking both to inform consensus report. Retrieved from http://www.qualityforum.org/
and enrich current practice and advocacy and to contribute Publications///A_National_Framework_and_Preferred_
to the growth and capacity of palliative care to meet the Practices_for_Palliative_and_Hospice_Care_Quality.aspx
common human needs of those who are impacted by life- Perlman, H. H. (). Social casework: A problem solving process.
Chicago, IL: University of Chicago Press.
threatening illness.
Richmond, M. E. (). Social diagnosis. New York, NY: Free
Press.
references
@£
This volume represents an emblematic collaboration that We are humbled by the expertise and passion expressed
began in 2009 at the American Academy of Hospice and Pal- by the contributors to this text. The social work practice and
liative Care annual meeting. It was there that Betty Ferrell, perspectives reflected in these pages honor the patients, fam-
PhD extended the invitation to meet with Tracy O’Hara, ilies and colleagues who have enriched our work and our
editor at Oxford University Press to propose a comprehen- lives. Our hope is that the lessons so arduously learned and
sive palliative social work textbook. Since that fateful meet- so generously shared will enable future social workers to
ing, Betty’s unwavering mentorship and inspiration have integrate palliative care principles within their practice, edu-
both nurtured and challenged us. cation and research.
We are eternally grateful to Lisa Kilburn, BA, for her We dedicate this work to our sons, Douglas and Manne,
boundless energy, professionalism and commitment to in the hope that future generations will have reliable access to
improving these pages. We are indebted to our Oxford team equitable and integrated care delivered by competent and
for their support and to the dedication of all who have sus- compassionate healthcare providers who embody a personal
tained this effort. commitment to excellence.
xxv
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contributors
@£
xxvii
xxviii Contributors
David M. Browning, MSW, BCD Maura Conry, Pharm D, MSW, LCSW, LSCSW
Senior Research Scientist Kansas City, KS
Education Development Center
Senior Scholar Suzy Croft, BA Hons, CQSW
Institute for Professionalism and Ethical Practice Diploma in Applied Social Sciences
Children’s Hospital Boston Senior Scholar
Boston, MA Senior Social Worker
St. Johns Hospice
Karen Bullock, PhD, LCSW London, United Kingdom
Associate Professor
John A. Hartford Scholar Ellen L. Csikai, MSW, MPH, PhD
North Carolina State University Professor
Department of Social Work Editor, Journal of Social Work in End-of-Life and
Raleigh, NC Palliative Care
School of Social Work
Susan Cadell, MSW, PhD The University of Alabama
Associate Professor, Director Manulife Tuscaloosa, AL
Centre for Healthy Living
Wilfrid Laurier University Louisa Daratsos, LCSW, ACSW
Ontario, Canada Psychosocial Coordinator Oncology/Palliative Care
New York Harbor Healthcare System
John G. Cagle, MSW, PhD Brooklyn Campus; Doctoral Candidate
Research Fellow Wurzweiler School of Social Work
Cecil G. Sheps Center for Health Services Research Yeshiva University
University of North Carolina at Chapel Hill
Chapel Hill, NC Elena Davis-Stenhouse, LCSW
Palliative Care Specialist
Katharine M. Campbell, PhD, LCSW, OSW-c Denver, CO
Clinical Oncology Social Worker
Sylvester Comprehensive Cancer Center–Deerfield Csaba L. Degi, MSW, PhD
UHealth: University of Miami Health System Babes-Bolyai University
Deerfield Beach, FL Faculty of Sociology and Social Work
Cluj Napoca, Romania
Grace H. Christ, DSW, PhD
Professor, Columbia University School of Social Work Elena D’Urbano
New York, NY Licenciada Trabajadora Social
Pallium Latinoamérica
Nancy F. Cincotta, MSW, MPhil, LCSW, ACSW, BCD Equipo de Cuidados Paliativos del Hospital del Gobierno de
Director of Psychosocial Services la Ciudad de Buenos Aires “Dr. Carlos B. Udaondo”
Camp Sunshine at Sebago Lake Buenos Aires, Argentina
Casco, Maine
Adjunct Instructor Sheila R. Enders, MSW
Department of Preventive Medicine Associate Clinical Professor
The Mount Sinai School of Medicine Department of Internal Medicine
New York, NY University of California, Davis
Elizabeth J. Clark, PhD, ACSW, MPH Betty R. Ferrell, PhD, MA, FAAN, FHPN
Executive Director Research Scientist
National Association of Social Workers Division of Nursing Research and Education
Washington, DC Department of Population Sciences
City of Hope National Medical Center
Yvette Colón, PhD, ACSW, BCD Duarte, CA
Director of Education and Support
American Pain Foundation
Baltimore, MD
Contributors xxix
John Mondanaro, MA, LCAT, MT_BC, CCLS Stacy F. Orloff, EdD, LCSW, ACHP-SW
Beth Israel Medical Center Suncoast Hospice
New York, NY Clearwater, FL
Kennan Moore, MSW, LCSW Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C
Palliative Care Specialist Senior Research Specialist
Denver, CO Division of Nursing Research and Education
City of Hope National Medical Center
Teresa Moro, MSW, Phd(c) Duarte, CA
University of Chicago
Glenview, IL Guadalupe R. Palos, RN, LMSW, DrPH
The University of Texas M. D. Anderson Cancer Center
Colleen M. Mulkerin, MSW, LCSW Houston, TX
Director
Palliative Medicine Consult Service Debra Parker Oliver, PhD, MSW
Hartford Hospital Associate Professor, University of Missouri
Hartford, CT Family and Community Medicine
Columbia, MO
xxxii Contributors
Lissa Parsonnet, PhD, LCSW, OSW-C John M. Quillin, PhD, MPH, CGC
Private Practice Assistant Professor of Human and Molecular Genetics
Springfield, NJ Virginia Commonwealth University
Richmond, VA
Malcolm Payne, BA, DipSS, PhD
Policy and Development Adviser Mary Raymer, LMSW, ACSW, DPNAP
St Christopher’s Hospice Chief Clinician/President
London, United Kingdom Raymer Psychotherapy & Consultation Services, PC
Visiting Professor, Opole University, Poland Acme, MI
Honorary Professor, Kingston University/St George’s
University of London Dona J. Reese, PhD, MSW, LCSW
School of Social Work
Judith R. Peres, LCSW-C Southern Illinois University Carbondale
Supporting Successful Transitions Carbondale, IL
Private Clinical Social Work Practice
Expert Consultant in Long-Term Care and Palliative Care Margaret Reith, BA, CQSW, MPhil, AASW
Bethesda, MD Senior Social Worker
Palliative Care Team, Epsom and St Helier University
Shlomit Perry, PhD, MSW Hospitals NHS Trust
Davidoff Center Sutton, United Kingdom
Belinson Hospital
Petach-Tikva, Israel Stacey S. Remke, MSW, LICSW
Children’s Institute for Pain and Palliative Care Pain
Farya Phillips, MA, CCLS Palliative Care Program Children’s Hospitals and Clinics
Doctoral Student, School of Social Work Minneapolis, MN
University of Texas at Austin
Austin, TX Bernice Sandowski, MSW, MS
Doctoral Student
Linda F. Piotrowski, MTS, BCC Adelphi University School of Social Work
Pastoral Care Coordinator Interim Administrator
Palliative Care/Norris Cotton Cancer Center Good Samaritan Nursing Home
Dartmouth-Hitchcock Medical Center Garden City, NY
Lebanon, NH
Dame Cicely Saunders OM, DBE, FRCP, FRCN (–)
Robin Pollens, MS, CCC-SLP Director, St. Christopher’s Hospice, UK
Western Michigan University
Department of Speech Pathology and Audiology Michal Scharlin, MSW, MPH
Kalamazoo, MI Palliative Social Worker, Fellowship Trained
Veterans Integrated Palliative Program
Pamela Pui Yu Leung, BSW, PhD, RSW VA Greater Los Angeles Healthcare System
Assistant Professor Los Angeles, CA
Department of Social Work and Social Administration
Honorary Research Fellow; Center of Behavioral Health & Tracy A. Schroepfer, PhD
Center on Aging Assistant Professor
The University of Hong Kong Hartford Geriatric Social Work Faculty Scholar
Hong Kong University of Wisconsin-Madison
Madison, WI
Hanan Qasim
Senior Social Worker in the Oncology Day Care Unit Sheryl Shermak, MSW, RSW
Social Work Coordinator, Breast Cancer Services PhD Student
Shaare Zedek Medical Center School of Nursing
Jerusalem, Israel University of Victoria
Victoria, BC, Canada
Contributors xxxiii
Nancy J. Sherman, MSW, MSM, LICSW Katherine Walsh, PhD, MSW, LICSW
Center for Grief and Healing/Hospice of the North Shore Associate Professor
Danvers, MA Westfield State University
Westfield, MA
Kelsey Simons, PhD, MSW
Social Work Scientist Wendy Walters, LCSW, OSW-C
Baycrest University of Alabama at Birmingham Hospital
Kunin-Lunenfeld Applied Research Unit Birmingham, AL
Assistant Professor of Social Work
Factor-Inwentash Faculty of Social Work Cheng Wan Peh, MSocSci (Counseling) BA, RSW
University of Toronto Senior Medical Social Worker
Toronto, Ontario, Canada Department of Medical Social Services
Assisi Hospice
Kathryn M. Smolinski, MSW Singapore
Juris Doctor Candidate
Wayne State University School of Law Karla T. Washington, MSW, PhD
Detroit, MI Assistant Professor
University of Louisville
Judith Solomon, MSW, LCSW, MPH Kent School of Social Work
Hackensack University Medical Center Louisville, KY
Hackensack, NJ
Dennis E. Watts
Donna L. Soltura, MSW University of Alabama at Birmingham Hospital
Continuing Care Manager Birmingham, AL
Palliative Care Service
Dartmouth Hitchcock Medical Center Tzer Wee Ng, MSW, RSW
Lebanon, NH Principal Medical Social Worker
Dept. of Care and Counseling
Doretta Stark, MA, LICSW Tan Tock Seng Hospital
Retired–University of Minnesota Medical Center Palliative Singapore
Care Consultation Service and Clinical Manager,
Oncology Social Work Department Sherri Weisenfluh
Currently, Private Consultant Hospice of the Bluegrass
St. Paul, MN Lexington, KY
I see increasing reason to believe that the view formed some time
back as to the origin of the Makonde bush is the correct one. I have
no doubt that it is not a natural product, but the result of human
occupation. Those parts of the high country where man—as a very
slight amount of practice enables the eye to perceive at once—has not
yet penetrated with axe and hoe, are still occupied by a splendid
timber forest quite able to sustain a comparison with our mixed
forests in Germany. But wherever man has once built his hut or tilled
his field, this horrible bush springs up. Every phase of this process
may be seen in the course of a couple of hours’ walk along the main
road. From the bush to right or left, one hears the sound of the axe—
not from one spot only, but from several directions at once. A few
steps further on, we can see what is taking place. The brush has been
cut down and piled up in heaps to the height of a yard or more,
between which the trunks of the large trees stand up like the last
pillars of a magnificent ruined building. These, too, present a
melancholy spectacle: the destructive Makonde have ringed them—
cut a broad strip of bark all round to ensure their dying off—and also
piled up pyramids of brush round them. Father and son, mother and
son-in-law, are chopping away perseveringly in the background—too
busy, almost, to look round at the white stranger, who usually excites
so much interest. If you pass by the same place a week later, the piles
of brushwood have disappeared and a thick layer of ashes has taken
the place of the green forest. The large trees stretch their
smouldering trunks and branches in dumb accusation to heaven—if
they have not already fallen and been more or less reduced to ashes,
perhaps only showing as a white stripe on the dark ground.
This work of destruction is carried out by the Makonde alike on the
virgin forest and on the bush which has sprung up on sites already
cultivated and deserted. In the second case they are saved the trouble
of burning the large trees, these being entirely absent in the
secondary bush.
After burning this piece of forest ground and loosening it with the
hoe, the native sows his corn and plants his vegetables. All over the
country, he goes in for bed-culture, which requires, and, in fact,
receives, the most careful attention. Weeds are nowhere tolerated in
the south of German East Africa. The crops may fail on the plains,
where droughts are frequent, but never on the plateau with its
abundant rains and heavy dews. Its fortunate inhabitants even have
the satisfaction of seeing the proud Wayao and Wamakua working
for them as labourers, driven by hunger to serve where they were
accustomed to rule.
But the light, sandy soil is soon exhausted, and would yield no
harvest the second year if cultivated twice running. This fact has
been familiar to the native for ages; consequently he provides in
time, and, while his crop is growing, prepares the next plot with axe
and firebrand. Next year he plants this with his various crops and
lets the first piece lie fallow. For a short time it remains waste and
desolate; then nature steps in to repair the destruction wrought by
man; a thousand new growths spring out of the exhausted soil, and
even the old stumps put forth fresh shoots. Next year the new growth
is up to one’s knees, and in a few years more it is that terrible,
impenetrable bush, which maintains its position till the black
occupier of the land has made the round of all the available sites and
come back to his starting point.
The Makonde are, body and soul, so to speak, one with this bush.
According to my Yao informants, indeed, their name means nothing
else but “bush people.” Their own tradition says that they have been
settled up here for a very long time, but to my surprise they laid great
stress on an original immigration. Their old homes were in the
south-east, near Mikindani and the mouth of the Rovuma, whence
their peaceful forefathers were driven by the continual raids of the
Sakalavas from Madagascar and the warlike Shirazis[47] of the coast,
to take refuge on the almost inaccessible plateau. I have studied
African ethnology for twenty years, but the fact that changes of
population in this apparently quiet and peaceable corner of the earth
could have been occasioned by outside enterprises taking place on
the high seas, was completely new to me. It is, no doubt, however,
correct.
The charming tribal legend of the Makonde—besides informing us
of other interesting matters—explains why they have to live in the
thickest of the bush and a long way from the edge of the plateau,
instead of making their permanent homes beside the purling brooks
and springs of the low country.
“The place where the tribe originated is Mahuta, on the southern
side of the plateau towards the Rovuma, where of old time there was
nothing but thick bush. Out of this bush came a man who never
washed himself or shaved his head, and who ate and drank but little.
He went out and made a human figure from the wood of a tree
growing in the open country, which he took home to his abode in the
bush and there set it upright. In the night this image came to life and
was a woman. The man and woman went down together to the
Rovuma to wash themselves. Here the woman gave birth to a still-
born child. They left that place and passed over the high land into the
valley of the Mbemkuru, where the woman had another child, which
was also born dead. Then they returned to the high bush country of
Mahuta, where the third child was born, which lived and grew up. In
course of time, the couple had many more children, and called
themselves Wamatanda. These were the ancestral stock of the
Makonde, also called Wamakonde,[48] i.e., aborigines. Their
forefather, the man from the bush, gave his children the command to
bury their dead upright, in memory of the mother of their race who
was cut out of wood and awoke to life when standing upright. He also
warned them against settling in the valleys and near large streams,
for sickness and death dwelt there. They were to make it a rule to
have their huts at least an hour’s walk from the nearest watering-
place; then their children would thrive and escape illness.”
The explanation of the name Makonde given by my informants is
somewhat different from that contained in the above legend, which I
extract from a little book (small, but packed with information), by
Pater Adams, entitled Lindi und sein Hinterland. Otherwise, my
results agree exactly with the statements of the legend. Washing?
Hapana—there is no such thing. Why should they do so? As it is, the
supply of water scarcely suffices for cooking and drinking; other
people do not wash, so why should the Makonde distinguish himself
by such needless eccentricity? As for shaving the head, the short,
woolly crop scarcely needs it,[49] so the second ancestral precept is
likewise easy enough to follow. Beyond this, however, there is
nothing ridiculous in the ancestor’s advice. I have obtained from
various local artists a fairly large number of figures carved in wood,
ranging from fifteen to twenty-three inches in height, and
representing women belonging to the great group of the Mavia,
Makonde, and Matambwe tribes. The carving is remarkably well
done and renders the female type with great accuracy, especially the
keloid ornamentation, to be described later on. As to the object and
meaning of their works the sculptors either could or (more probably)
would tell me nothing, and I was forced to content myself with the
scanty information vouchsafed by one man, who said that the figures
were merely intended to represent the nembo—the artificial
deformations of pelele, ear-discs, and keloids. The legend recorded
by Pater Adams places these figures in a new light. They must surely
be more than mere dolls; and we may even venture to assume that
they are—though the majority of present-day Makonde are probably
unaware of the fact—representations of the tribal ancestress.
The references in the legend to the descent from Mahuta to the
Rovuma, and to a journey across the highlands into the Mbekuru
valley, undoubtedly indicate the previous history of the tribe, the
travels of the ancestral pair typifying the migrations of their
descendants. The descent to the neighbouring Rovuma valley, with
its extraordinary fertility and great abundance of game, is intelligible
at a glance—but the crossing of the Lukuledi depression, the ascent
to the Rondo Plateau and the descent to the Mbemkuru, also lie
within the bounds of probability, for all these districts have exactly
the same character as the extreme south. Now, however, comes a
point of especial interest for our bacteriological age. The primitive
Makonde did not enjoy their lives in the marshy river-valleys.
Disease raged among them, and many died. It was only after they
had returned to their original home near Mahuta, that the health
conditions of these people improved. We are very apt to think of the
African as a stupid person whose ignorance of nature is only equalled
by his fear of it, and who looks on all mishaps as caused by evil
spirits and malignant natural powers. It is much more correct to
assume in this case that the people very early learnt to distinguish
districts infested with malaria from those where it is absent.
This knowledge is crystallized in the
ancestral warning against settling in the
valleys and near the great waters, the
dwelling-places of disease and death. At the
same time, for security against the hostile
Mavia south of the Rovuma, it was enacted
that every settlement must be not less than a
certain distance from the southern edge of the
plateau. Such in fact is their mode of life at the
present day. It is not such a bad one, and
certainly they are both safer and more
comfortable than the Makua, the recent
intruders from the south, who have made USUAL METHOD OF
good their footing on the western edge of the CLOSING HUT-DOOR
plateau, extending over a fairly wide belt of
country. Neither Makua nor Makonde show in their dwellings
anything of the size and comeliness of the Yao houses in the plain,
especially at Masasi, Chingulungulu and Zuza’s. Jumbe Chauro, a
Makonde hamlet not far from Newala, on the road to Mahuta, is the
most important settlement of the tribe I have yet seen, and has fairly
spacious huts. But how slovenly is their construction compared with
the palatial residences of the elephant-hunters living in the plain.
The roofs are still more untidy than in the general run of huts during
the dry season, the walls show here and there the scanty beginnings
or the lamentable remains of the mud plastering, and the interior is a
veritable dog-kennel; dirt, dust and disorder everywhere. A few huts
only show any attempt at division into rooms, and this consists
merely of very roughly-made bamboo partitions. In one point alone
have I noticed any indication of progress—in the method of fastening
the door. Houses all over the south are secured in a simple but
ingenious manner. The door consists of a set of stout pieces of wood
or bamboo, tied with bark-string to two cross-pieces, and moving in
two grooves round one of the door-posts, so as to open inwards. If
the owner wishes to leave home, he takes two logs as thick as a man’s
upper arm and about a yard long. One of these is placed obliquely
against the middle of the door from the inside, so as to form an angle
of from 60° to 75° with the ground. He then places the second piece
horizontally across the first, pressing it downward with all his might.
It is kept in place by two strong posts planted in the ground a few
inches inside the door. This fastening is absolutely safe, but of course
cannot be applied to both doors at once, otherwise how could the
owner leave or enter his house? I have not yet succeeded in finding
out how the back door is fastened.