. Social Work and Palliative Care— The Early History
Dame Cicely Saunders
. Palliative Social Work: An Historical Perspective
Bernice Catherine Harper
. Defining Social Work’s Role and Leadership Contributions in Palliative Care
Susan Blacker and Grace H. Christ
. Guess Who’s Coming to Dinner? The Emerging Identity of Palliative Social Workers
Philip C. Higgins
Section II @£
Social Work Practice: Setting Specific
. Palliative Care Consultation
Colleen M. Mulkerin
. Palliative Social Work in the Intensive Care Unit
Andrew J. McCormick
. Palliative Social Work in the Emergency Department
Robin Rudy Lawson
. Social Work and Palliative Care in Hospice
Sherri Weisenfluh
. Pediatric Hospice and Palliative Care: The Invaluable Role of Social Work
Stacy F. Orloff
. Home-Based Palliative Care
Elena Davis-Stenhouse, Kennan Moore, and Becky Niemeyer
. Palliative Care in Long-Term Care Facilities
Mercedes Bern-Klug and Kelsey Simons
. Palliative Care for Veterans
Louisa Daratsos
. Special Considerations in Rural and Inner-City Areas
Richard B. Francoeur, Susan A. Murty, and Bernice Sandowski
. Clinical Trials and the Role of Social Work
Karlynn BrintzenhofeSzoc
. Key Roles for Palliative Social Work in Correctional Settings
John F. Linder and Sheila R. Enders
Section III @£
Social Work Practice: Screening, Assessment, and Intervention
. Screening, Assessment, and a Problem-Solving Intervention for Distress
James R. Zabora
. Mental Health Risk in Palliative Care: The Social Work Role
Katherine Walsh and Susan Hedlund
. Addressing Suffering in Palliative Care: Two Psychotherapeutic Models
Lissa Parsonnet and Carrie Lethborg
. Spirituality and Social Work Practice in Palliative Care
Dona J. Reese
. Discovering Strengths and Growth in Palliative Care
Susan Cadell, Sheryl Shermak, and Meaghen Johnston
. Caregivers in Palliative Care: Roles and Responsibilities
Myra Glajchen
. Families and Family Conferencing
Iris Cohen Fineberg and Amy Bauer
. The Doctor within: Integrative Medicine, Social Work, and Palliative Care
Lucia McBee
. Sexuality, Sensuality, and Intimacy in Palliative Care
Les Gallo-Silver
. The Social Work Role in Pain and Symptom Management
John G. Cagle and Terry Altilio
. The Whys and Wherefores of Support Groups: Helping People Cope
Nancy Sherman
. Social Work and Technology: The Software and Hard Drive of Patient and Family Care
Katharine M. Campbell
. Bereavement in the Beginning Phase of Life: Grief in Children and Their Families
Nancy F. Cincotta
. Holding On and Letting Go: The Red Thread of Adult Bereavement
Susan Gerbino and Mary Raymer
Section IV @£
Population-Specific Practice
. The Collaboration of Palliative Care and Oncology
Social Work
A. Marlene Lockey, Diane Benefiel, and Margaret Meyer
. Palliative Care in Chronic Kidney Disease
Teri Browne
. Emerging Opportunities for Palliative
Social Workers
Robin Rudy Lawson and Kelly M. McHenry
. Social Work, HIV Disease, and Palliative Care
William Goeren
. Palliative Care with Vulnerable Populations
Sarah Gehlert and Teresa Moro
. Palliative Care with Lesbian, Gay, Bisexual, and Transgender Persons
Kathryn M. Smolinski and Yvette Colón
. Social Work in Pediatric Palliative Care
Barbara L. Jones, Stacy S. Remke, and Farya Phillips
. Palliative Social Work with Older Adults and Their Families
Daniel S. Gardner
Section V @£
Collaborations in Palliative Care
. Teamwork in Palliative Care: An Integrative Approach
Doretta Stark
. Social Work and Psychology
Becky A. Anderson, Louise E. Marasco, Julia Kasl-Godley, and Sheila G. Kennedy
. Social Work, Fund-Raising, and Philanthropy: It’s Not Just about Money
Laura Benson and Carolyn Messner
. Social Work, Self-Advocates, and Users of Palliative Care
Peter Beresford and Suzy Croft
. Social Work and Pharmacy
Maura Conry, Christopher M. Herndon, and Diane R. Jackson
. Social Work and Child Life: A Family’s Journey with Childhood Cancer
Ellen Goldring and Judith Solomon
. Social Work and Psychiatry
Jimmie C. Holland and Anne Martin
. Social Work and Creative Arts Therapy Services
John Mondanaro and Stacey Needleman
. Social Work and Physician Collaboration in Palliative Care
J. J. Nadicksbernd, Kathryn Thornberry, and Charles F. von Gunten
. Social Work and Nursing: Creating Effective Collaborations in Palliative Care
Holly Nelson-Becker and Betty R. Ferrell
. Social Work and Speech Pathology: Supporting Communication in Palliative Care
Robin Pollens and Marie C. Lynn
. Social Work and Genetics
John M. Quillin, Jaclyn Miller, and Joann N. Bodurtha
. Teamwork in Palliative Care: Social Work Role with Spiritual Care Professionals
Donna L. Soltura and Linda F. Piotrowski
. Social Work and Bioethics: Enhanced Resolution of Ethical Dilemmas and the Challenges along the Way
Gary L. Stein and Jeanne Kerwin
. Social Work and Volunteers
Wendy Walters and Dennis E. Watts
Section VI @£
Regional Voices from a Global Perspective
. The Need for Global Capacity Building for Palliative Social Work
Rebecca S. Myers and Elizabeth J. Clark
. Palliative Care, Culture, and the Pacific Basin
Linda Anngela-Cole, Lana Sue Ka‘opua, and Yvonne Yim
. Palliative Social Work in Canada
Susan Cadell and Harvey Bosma
. Palliative Social Work in Central-Eastern Europe: The Emerging Experience of Romania
Csaba L. Dégi
. Palliative Social Work in Buenos Aires, Argentina
Elena D’Urbano
. Australian Palliative Social Work
Julie Garrard, Julie Greathouse, Sue Hearn, and Patricia McKinnon
. Palliative Social Work: An African Perspective
Jennifer Jane Hunt and Valerie Maasdorp
. Palliative Care: An Indian Perspective
Aarti Jagannathan and Srilatha Juvva
. Palliative Social Work in Japan
Yukie Kurihara
. Palliative Care in the Chinese Context: An Integrated Framework for Culturally Respectful Practice
Pamela Pui Yu Leung and Cecilia Lai Wan Chan
. Palliative Social Work in Singapore
Cheng Wan Peh and Tzer Wee Ng
. Palliative Social Work in the United Kingdom
Malcolm Payne and Margaret Reith
. Palliative Social Work in Israel
Shlomit Perry
. Selected Issues in Palliative Care among East Jerusalem Arab Residents
Hanan Qasim
Section VII @£ Ethics
. Ethical Considerations in Palliative Care: An Overview
Patricia O'Donnell
. The Social Work Role in Decision Making: Ethical, Psychosocial, and Cultural Perspectives
Tracy Borgmeyer
. Advance Directives from a Social Work Perspective: Influence of Culture and Family Dynamics
Karen Bullock
. Pediatric Palliative Care Ethics and Decision Making
Hollye Harrington Jacobs
. Social Work’s Ethical Challenge: Supporting the Terminally Ill Who Consider a Hastened Death
Tracy A. Schroepfer, John F. Linder, and Pamela J. Miller
. Palliative Sedation: A View through the Kaleidoscope
Terry Altilio
Section VIII @£
Professional Issues
. Navigating in Swampy Lowlands: A Relational Approach to Practice-Based Learning in Palliative Care
David M. Browning and Susan Gerbino
. Enhancing Professionalism, Leadership, and Advocacy: A Call to Arms
Mary Raymer and Gary Gardia
. The Power and Potential of Language
Terry Altilio
. Professional Development: Educational Opportunities and Resources
Ellen L. Csikai and Barbara L. Jones
. Professional Connections for Palliative Social Workers
Ellen L. Csikai
. Financial Considerations for the Palliative Social Worker
Jaime Goldberg and Michal Scharlin
. Social Work Research Agenda in Palliative and End-of-Life Care
Guadalupe R. Palos
. Merging Research and Clinical Practice
Debra Parker Oliver and Karla T. Washington
. Quality Improvement and Organizational Change
Barbara Ivanko
. Public Policy in Palliative and End-of-Life Care
Judith R. Peres
. Self-Care as Best Practice in Palliative Care
Elizabeth J. Clark
. Legacy Building: Implications for Reflective Practice
Shirley Otis-Green
Epilogue: Lessons Learned along the Yellow Brick Road
Appendix: Patient Narratives
Index
foreword by betty r. ferrell
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I began my career-long admiration of social workers with the start of my nursing career on an oncology unit. My initial years in oncology as a new graduate were in many ways best described as total chaos. Patients were very ill and the evolving field of oncology was struggling to develop use of chemotherapy, radiation therapy and to develop both inpatient and outpatient services.
Aggressive surgical techniques included drastic surgeries for patients such as radical mastectomies, incredibly invasive head and neck surgeries amid a care system that was ill prepared to manage the tremendous physical and psychological burdens on patients and families resulting from this emerging field of care.
In the midst of this chaotic and overwhelming world of oncology I was introduced to social work. These professionals were quite simply the calm in the storm. The oncology social workers were tranquil yet strong patient advocates; they were focused on the person and family surrounding the tumor and in many ways the social workers represented a solid anchor and in a clear sense of humanity in an environment otherwise void of such qualities.
From those early years, I learned a key lesson for survival as a nurse: Stay close to the social workers. I also learned that these social workers were equally attentive to nurses and other staff and that their influence extended to the broader systems of care. I observed that the common nursing or medical response amidst a crisis (a dying patient, an angry spouse, a dysfunctional family) was generally, “Has anyone called the social worker”?
In my own professional career journey to focus on palliative care, I have remained impressed by my social work colleagues. I don’t fully understand the professional preparation
or the culture of social work but I do know that their presence offers a consistent focus on patient and family needs, and is the embodiment of advocacy and a passion for whole person care. Social workers are often the conscience of an organization, the moral voice and the advocates for justice and compassion amidst an ever burdened system of care.
The field of palliative social work has emerged parallel to palliative nursing. It has been my privilege to witness the development of palliative social work, largely by observing the enormous commitment and passion of the two editors of this textbook, pioneers Shirley Otis-Green and Terry Altilio. My own passion and commitment has been inspired by observing their tireless efforts to advance palliative social work.
In my colleague Nessa Coyle and I published the first edition of the Textbook of Palliative Nursing. I realized then the importance of a book for a field. Far beyond a collection of chapters, a major Textbook represents the collective wisdom of a field; it sets the standard of what excellent care should look like and it holds all its members to a higher plane of practice.
Terry Altilio and Shirley Otis-Green have made a major professional contribution in the publication of this book. It is a work of art, quite fitting for the profession of social work, which is indeed a science and an art. The breadth and depth of content in this Textbook are monumental. They have defined the field and in doing so, there is no turning back.
Betty R. Ferrell, PhD, MA, FAAN, FPCN Research Scientist
City of Hope Medical Center Duarte, CA
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foreword by kathleen m. foley
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For all of those who have worked to build the interdisciplinary field of hospice and palliative care, the role of the social worker is recognized as central to our overarching goal of providing humane compassionate and competent care to patients and families with life-limiting illnesses.
This textbook marks an important stage in emphasizing the role of the social worker in palliative care. It sets the standard for the practice of palliative social work. Through its chapters, it defines a body of knowledge that outlines the field, describes its core curriculum and emphasizes its professional development.
The editors, Terry Altilio and Shirley Otis Green, are two professionals who bring to this task a breadth and depth of social work practice that is unparalleled. They have walked the walk and talked the talk. As practitioners and educators, they have helped to build the field and shape its domains. Their clinical experience, teaching and research efforts provide the critical background knowledge for framing the body of information that comprises the field of palliative social work.
They have both modeled the role of the social worker in interdisciplinary teams and in collaborative practices. They have team taught and led major educational efforts. Both have been in leadership positions in various organizations and have played important roles in supporting the development of standards in palliative social work and in advocating for formal certification programs. Both were supported as social work leaders in the Project on Death in America whose focus was to transform the culture of dying in the United States. Terry Altilio was our social worker on our Pain Service at Memorial Sloan-Kettering Cancer Center and our
team learned how to address and care for patients’ and families’ psychosocial needs from her.
The book begins with an historical perspective, which sets the stage for understanding how palliative care became a focus for social work practice and research. This section points out the challenges, struggles and current opportunities for social work‘s role in advocacy, treatment, care and support for patients with life-limiting illnesses.
Numerous chapters focus specific attention on the core competencies in training the social worker in palliative care; others describe the various settings and disease specific populations which invite social work expertise and which help to define their scope of practice. These chapters point out the wide range of opportunities for improving palliative care be it in the hospital, the hospice, the nursing home, the prison or the rural community. On the global perspective of palliative social work, a range of chapters by international faculty describe a rich array of culturally sensitive variations in social work practice in palliative care.
All of the chapters in the textbook are authored by experts in their topic area. Their writings reflect both a practical and theoretical knowledge of what are the important facts to know to provide palliative social work services.
This textbook has sufficient breath and depth that allows new social work students to learn the history and the basics of palliative social work and the expertise to refresh their knowledge and learn the field’s potential, growth, development, international policy impact and future direction.
Professional and ethical issues are represented well and provide for the reader clear, balanced discussions of the challenges and complexities of caring for patients who are
xiv Foreword by
Kathleen M. Foley
dying, coming to terms with a fatal illness, or trying to resolve complicated grief and bereavement issues.
Providing palliative care for all of those who need it is a daunting task. Such care requires an interdisciplinary team and the social worker is an essential team member. This textbook is a compendium of information that is authoritative, comprehensive and readable. It describes the elements of the field’s core competencies and also the challenges of research, professional development and the integration of palliative care into health care policy. It joins two other Oxford Textbooks—in palliative medicine and nursing— expanding the body of knowledge and expertise in the field
of palliative care and clearly describing the contributions and the role of the social worker and the domains of palliative social work.
Kathleen M. Foley, MD Professor of Neurology, Neuroscience & Clinical Pharmacology
Weill Medical College of Cornell University Attending Neurologist Memorial Sloan-Kettering-Cancer Center Medical Director, International Palliative Care Initiative Open Society Institute
foreword by russell k. portenoy
Whether driven by a sense of shared purpose to redress a distortion in medical care, or simply a sense of satisfaction that comes with helping others, health professionals of all types have begun to flock to the discipline of palliative care. In so doing, they are creating a great wave of good around the world. In many dozens of countries, professional caregivers have awakened to the importance of a competent and compassionate approach to patients with serious illness, and have targeted the delivery of high quality care to a set of primary goals, including the relief of suffering, lessening of illness burden, and retained quality of life, that have become the cornerstones of good palliative care for the ill and their families.
In the United States, the health professions are living through an exemplar experience. Following a period in the s during which innovators developed early models of hospice or palliative care for the dying, US activists pushed the government to create a new national system of care delivery through the creation of the Medicare hospice benefit in
Although this benefit embodied many elements of a future construct—specialist palliative care—the early
s were a time of activism at the policy level which would much later be accompanied by operational frameworks that would define the specialty or position it in mainstream health care as a set of services to address the complex needs associated with advanced illness. Hospice quickly evolved into a very large and effective system for end-of-life care. The hospice industry serves more than one million patients and families each year, garners extraordinarily high rates of satisfaction by the families it touches, and saves the health system money. It has, however, remained largely outside of the mainstream health care system, usually accessed when death is less than a month away and disease-modifying therapies are stopped. The dedicated professionals who work in this US version of hospice have long understood that hospice needs integration into the larger system of health care, but
the constructs that would provide a strategy for change were lacking for many years.
The term “palliative care” also entered the health-related lexicon in the s, but there was no clear definition appropriate for the US system, the goals and objectives were not evident to most practitioners, and the distinctions between palliative care and the US version of hospice as a separate system for end-of-life care were indistinct. For most health professionals working in hospitals or in the community, the criterion that gave meaning to both these labels was the imminence of death and not the clinical need for management of illness burden in multiple domains. Take away the challenge of “dying well,” and even the most compassionate physician, nurse or social worker was likely to doubt whether there really was a difference between palliative care and just good care of the sick.
The gradual, and quite extraordinary, change in this view is the context from which to understand the significance of this new tome devoted to specialist-level palliative care practiced by social workers. This book is more than a beautifully edited and much needed compendium of existing knowledge of theoretical and practical importance to social workers. It is yet another milestone along a path that is humanizing health care and establishing a set of specialist competencies without which a palliative care movement in the US and elsewhere would wither.
In the US, there have been many small but momentous steps along this path. Even as the Medicare benefit was the impetus for the development of a billion dollar industry to provide an interdisciplinary model of care for dying patients at home, expert committees were impaneled to define palliative care. Each of the US definitions, from the Institute of Medicine to the National Quality Forum, complemented those created by the World Health Organization and other international and national groups. All emphasized a set of core values and concerns targeting patients with any type of
Foreword by Russell K. Portenoy
serious life-threatening illness and their families. It refers to patient-centered and family-focused care that addresses complex needs in any of the multiple domains that are affected by illness. It is care that is needed throughout the continuum of disease and in every venue of care. It overtly helps to define the goals of care and does so in the broadest terms, incorporating the objective of disease control to prolong life and limit the impact of pathology, but considering the appropriateness of this care when risks and burdens and true benefits are acknowledged. Medical decision making is grounded in culture and ethics, and refracted through the individual prism formed by the life experiences and the values, preferences and wishes of the patient and family.
Once the definition and the clinical objectives of palliative care were articulated, the important role of hospice became clearer and the need for better palliative care upstream from end-of-life became evident. Two simple observations provided subtext for this realization: Estimates of survival do not correlate well with clinical need, and in any case, prognostication is too inexact to rationalize access to care. Palliative care has become understood in the US as a model that supports the physical, psychosocial, and spiritual well being of the patient and family throughout the course of a disease that could require many years to progress. The focus on a clinical response to active dying is necessary, but not sufficient to address the burden of illness and its treatment. From diagnosis onward, the goals of care must be broadened to encompass expert symptom control, empathic and effective communication, management of psychological and psychosocial distress, help for spiritual and existential concerns, practical assistance and coordination of care, and other strategies to address the complicated and changeable scenario of illness. Palliative care accepts both the inevitability of death and the powerful desire to forestall it. When the disease is advanced and death is anticipated soon, palliative care acknowledges the potentially special nature of the care required by the patient or the family.
In the U.S. and a small number of other countries, this process of definition gradually overwhelmed an emerging controversy about the nature of palliative care—is it just good care, or is it something else? If palliative care is best understood as a therapeutic model targeting diverse populations with serious or life-threatening illnesses and pursued by diverse health professionals with common goals, it is undeniably part of the good care that should be offered by any professional, a best practice for physicians, nurses, social workers and others. This does not negate the alternative view, however. With validity endorsed by the success of the hospice industry, it is now axiomatic that some patients and families also need care delivered as a specialist practice by professionals with advanced training and specific resources.
The conceptualization of palliative care as a model that may be viewed through a lens that distinguishes generalist from specialist practice has had profound implications. It suggests to all types of health professionals that there is an affirmative obligation to understand the basics about this
model of care and incorporate elements into practice whenever a patient with a serious or life-threatening illness requires treatment. All clinicians who provide services to patients with serious or life-threatening illness should have generalist-level skills in palliative care. They should understand and embrace the broad tenets of this discipline and perform core aspects, such as a multidimensional assessment. Each of these professionals can promote elements of good communication, such as advance care planning, or offer specific interventions that may address problems that undermine quality of life. Each should understand how to refer to other professionals or programs.
Generalist-level palliative care should be supported by systems of care, such as hospitals and nursing homes. These facilities can be encouraged to adopt specific programming, such as quality or performance improvement projects, patient or family education, or programs that reduce disparities related to language or culture. They should provide for accessible specialist services, like hospice.
Consensus about the parameters of generalist palliative care illuminates the nature of specialist care. More than years ago, the federally-mandated hospice model required an interdisciplinary team for care delivered in the community, presaging an essential element of specialist practice. Specialists always try to work in teams, the core of which is the physician, the nurse, the social worker and the chaplain. Each member of the specialist team relies on the knowledge and skills of the others; ideally, each should have the advanced study, mentored training, and experience that are the foundations for specialist care. Together, the team offers continuous and comprehensive care with a level of sophistication and expertise that can handle complex problems and multiple sources of distress in any type of patient or family, in any venue of care. Although palliative care is inarguably not just end-of-life care, it is the setting of advanced disease and imminent death that often brings the type of complexity in goal setting and communication, and the management of symptoms and other sources of distress, that calls for the input of experts. In the US, institution-based palliative care teams rapidly evolved and now mirror in many hospitals and nursing homes the interdisciplinary approach to care for the dying pioneered by hospice.
The nature of specialist care places a very high value on professionalism. Indeed, it is the commitment to professionalism that may be one of the key drivers of the palliative care movement in the United States and other countries. “Professionalism” connotes an identity, supported by membership in a group defined by devotion to a core set of attitudes, deep knowledge, and a special set of skills. In health care, it implies a commitment to lifelong learning, quality work derived from standards of care, support for rational care based on evidence, and the promise of integrity and ethical practice.
Professionalism in the health professions also embraces the convention of certification. A certificate, earned by demonstration of knowledge and experience, is a tangible indicator that a discipline has defined itself, that committed
practitioners exist, and that high standards will be applied as it evolves. In the US, the adoption by the American Board of Medical Specialties of a new medical subspecialty—Hospice and Palliative Medicine—gave new weight to the discipline for physicians. For these professionals, there was immediate mainstreaming, based on a long list of competencies that implicitly distinguished generalist from specialist care.
The acceptance of Hospice and Palliative Medicine as a medical subspecialty has been a very important milestone along the road to full integration of palliative care into the US system. It followed many positive events, which together gave support to an early vision of this change. Among these events were the earlier acceptance of palliative medicine’s specialty status in United Kingdom and then several other countries, and the rapid growth of a medical literature devoted to the competencies required to specialize in this field. It was fitting that the first medical textbook devoted to palliative medicine, the Oxford Textbook of Palliative Medicine, originated from the UK. Published in , this book assumed a role beyond a compendium of evolving knowledge. It awakened medical professionals to an emerging and rich literature in palliative care, and defined new medical reality of specialist practice by physicians.
Foreword by
Russell K. Portenoy
Seventeen years following the publication of the first edition of the Oxford Textbook of Palliative Medicine, Altilio and Otis-Green have a similar accomplishment in producing the Oxford Textbook of Palliative Social Work. It is a signal to the broader professional community that palliative social work—specialist-level care provided to patients and families by social workers with specialist knowledge and competencies—is a reality. This book will add to the momentum for a formal specialty, support the professionalism of those already involved, and inspire younger colleagues to enter the field. Certainly important as a clinical resource, its good is likely to extend far beyond this, providing another essential step in the slow but inevitable shift in the priorities of a health care culture that remains in need of change.
Russell K. Portenoy, MD Chairman, Department of Pain Medicine and Palliative Care
Beth Israel Medical Center New York, N.Y. Professor of Neurology and Anesthesiology Albert Einstein College of Medicine
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Terry Altilio, MSW, LCSW, ACSW
Social Work Coordinator
Department of Pain Medicine & Palliative Care
Beth Israel Medical Center
Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C
Senior Research Specialist
Division of Nursing Research and Education
City of Hope National Medical Center
“I’ve a feeling we’re not in Kansas anymore” are the words spoken by Dorothy Gale, a curious, yearning, and adventurous young girl who, with her dog Toto, is magically transported during a tornado to a strange, unfamiliar place. These words from the novel The Wonderful Wizard of Oz (Baum, ) mark a transition from the sepia-toned landscape of a farm in Kansas to the technicolor, mystical Land of Oz, where Dorothy and Toto will encounter complex characters, some 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 captured 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 selfrealization 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
And what of the characters and themes that appear in the Land of Oz; how do they relate to the Oxford Textbook of Palliative Social Work? Almost immediately we are invited to consider a theme that is implicit in palliative care and has
long been central to the focus of social work: the existential and emotional experience of feeling “unheard.” Dorothy is rebuffed by the adults who surely care for her but are otherwise preoccupied. She chooses to run away both to save her dog Toto from potential harm and in reaction to having her fears and worries delegitimized and her needs minimized.
This theme of acknowledging the vulnerable and advocating for the needs of those who are unseen and unheard is pervasive throughout social work. Many persons who benefit from palliative services are vulnerable consequent to illness and the myriad of related bio-psychosocial-spiritual factors that impact their experience. This text reflects a focused voice for the profession and the populations that we serve—a voice asserted through the writings and lived experiences of over
authors.
This theme of impacting the lives of those with soft voices continues into the Land of Oz when Dorothy, through no conscious effort of her own, influences the social and existential experience of “little people” who have been enslaved by the powerful Wicked Witch of the West. Dorothy’s house, lifted by the tornado, drops and ends both the life of this witch and her tyrannical powers. This precipitous death results in an unintended and unplanned consequence: The previously enslaved “little people” are freed and look to Dorothy as their heroine. This multidimensional and highly symbolic event is followed by the emergence of witches, both good and evil, who bring both guidance and threat to the world of Dorothy and Toto. It is in this complex setting of death, liberation, revenge, and serendipitous events that Dorothy begins to long for the comfort of her home and her caregivers, Auntie Em and Uncle Henry. She is guided by Glinda, a benevolent witch, and begins the trek down the yellow brick road in enchanted ruby red slippers to fulfill dreams and aspirations and seek the omniscient Wizard of Oz. Living in Emerald City, the Wizard purports to have mysterious powers that may transport Dorothy and Toto back to Kansas, to the familiarity and comforts of home.
The “yellow brick road” seems an appropriate metaphor for the evolving journey of social work into palliative care, while the magical “ruby slippers” are a symbol of endless potential to influence the care for patients and their families and the systems which are intended to serve them. The blend of the comforts implicit in Dorothy’s longing for home and the mystery, uncertainty, and possibilities represented by Dorothy’s beginning journey is for many a metaphorical representation of the illness experience that palliative care clinicians are privileged to join.
Here also is where the Oxford Textbook of Palliative Social Work has symbolic synergy with the lives and strivings of Dorothy and the companions who join her trek: the Scarecrow, the Tin Man, and the Lion. These allegorical figures represent essential aspects of clinical practice in palliative care. The Scarecrow desires knowledge, the ability to think; the Tin Man wants a heart to experience emotion; and the Lion searches for courage. They seek the Wizard of Oz, whose power and wisdom are thought to hold the answers to their
hopes, dreams, and self-realization. Of course, the trek is not without obstacles, danger, and challenges. Negotiations are necessary, hopes are enhanced and expanded, and the Wizard, while initially devious and insincere, eventually assists Dorothy and her colleagues to search for and discover their internal resources and abilities. Perceptions are reframed so that the pursuit for a brain stretches beyond an anatomical organ to the process of critical thinking, the need for a heart extends to the capacity to love and be loved, and pursuit for courage is woven with wisdom.
It is the intent of this text to integrate knowledge, thoughtfulness, heart, compassion, and courage as central components of palliative social work and to invite social workers to build on practice principles and values that are foundational and fundamental to this specialty. We invite readers on a journey to discover how the richness and depth of a sepiatoned world blends with the vibrance and excitement of technicolor. “We’re not in Kansas anymore” is an invitation to honor and assimilate the range of concepts and values that are embedded in social work and palliative care and reflect that integrated experience in the manner in which we serve patients and families.
Blending: Sepia and Technicolor
We are privileged to present the Oxford Textbook of Palliative Social Work as a companion volume to the classic Oxford Textbook of Palliative Medicine and the Oxford Textbook of Palliative Nursing. This important addition to Oxford University’s library of definitive palliative care textbooks reflects the unique synergy of palliative care and the social work profession, while honoring the interdisciplinary sharing that is fundamental to excellent care for patients and families. The need for this text grew concurrently with the global proliferation of palliative care and hospice programs, where social workers provide culturally respectful psychosocial-spiritual care for patients and families across a variety of settings and throughout the life span (Cadell, Johnston, Bosma & Wainright, ). It joins respected authors, educators, researchers, and practitioners to create a volume that integrates the best theory, research, and practice wisdom in a manner that both generalist and specialist clinicians and educators will find scholarly and practical.
Sepia tone for many evokes feelings of warmth and nostalgia, compelling a response that is significantly different than that elicited by the vibrant colors of a technicolor world. Many photographs printed with sepia tone evoke an older era. When our profession reflects on an “older era” we find traditions of service and advocacy on the individual, family, community, and policy level. Reflecting these historic roots, this text focuses on individuals, their families of origin, and families of creation, and it delineates the public policy and ethical issues that summon our participation and challenge us to intervene in such aspects of care as the undertreatment
of pain, access to care, and the physical and psychosocialspiritual impact of caregiving. We also see that early pioneers in social work articulated values and clinical perspectives that are essential to palliative care. As early as , Mary Richmond emphasized a core value of providing the patient a “fair and patient hearing” and to establish, if possible, a sympathetic mutual understanding (, p. ). Gordon Hamilton () would later point to the importance of the person telling his or her own story and Helen Harris Perlman would reinforce the idea that the client’s problem is best understood from his or her own perspective (). These principles are imminently transferable to palliative care because they encourage clinicians to search for and listen to the context in which illness occurs and to seek to understand the singular experience of each patient and family upon which to create a plan of care.
And what of the technicolor stimulus that set the stage for the publication of the Oxford Textbook of Palliative Social Work? These influences are many, emanating from within the profession of social work and from the evolution of palliative care as an interdisciplinary specialty. The initiative and advocacy for our text followed a period of intense and exciting growth of the specialty. In , the National Consensus Project for Quality Palliative Care (NCP) issued the second edition of the Clinical Practice Guidelines for Quality Palliative Care, which included the following eight domains of care, each of which invites expert social work participation:
• Structure and processes of care
• Physical aspects of care
• Psychosocial and psychiatric aspects of care
• Social aspects of care
• Spiritual, religious, and existential aspects of care
• Cultural aspects of care
• Care of the imminently dying patient
• Ethical and legal aspects of care
Each domain is followed by specific clinical practice guidelines regarding professional behavior and service delivery (National Consensus Project for Quality Palliative Care, , p. ).
In , the National Quality Forum (NQF), a private nonprofit organization that aims to improve the quality of health care for Americans, endorsed, adopted, and integrated the Clinical Practice Guidelines for Quality Palliative Care into their document A National Framework for Palliative and Hospice Care Quality Measurement and Reporting. The NQF reinforced that palliative care:
Refers to patient and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice. Hospice care is a service delivery system that provides palliative care for patients who have a
limited life expectancy and require comprehensive biomedical, psychosocial, and spiritual support as they enter the terminal stage of an illness or condition. It also supports family members coping with the complex consequences of illness, disability, and aging as death nears. Hospice care further addresses the bereavement needs of the family following the death of the patient.
Of particular importance, palliative care services are indicated across the entire trajectory of a patient’s illness and its provision should not be restricted to the end-of-life phase. (NQF, p. VI)
The Framework document provides the foundation upon which to build a quality measurement and reporting system. As shown in Table I., it identifies the structural and programmatic elements as essential to quality performance.
The Framework served as a guide for the development of preferred practices, derived from the NCP eight domains of quality palliative and hospice care. These preferred practices are intended to serve as “building blocks for high quality programs across many practice settings and as the basis for developing performance measures” (NQF, p. VI). (For more information, please see Chapter ).
The domains, guidelines, and preferred practices assist clinicians to serve persons who are living with life-threatening disease, responding to their needs and those of their families, over time and transitions, working to build continuity and coherence as patients and family move through the experience of illness. In addition to the essential synchrony of social work values with principles of palliative care, the profession has an existing opportunity to move palliative care beyond health care settings into the community. For example, social workers employed in senior centers may easily become advocates for pain and symptom management, assist participants who might wish to complete advance directives, and intervene when caregiver distress impacts older adults and their families. School social workers who work with families where illness exists or death occurs have the opportunity to intervene on an individual, family,
Table I. National Quality Forum: Elements of Quality Performance
Interdisciplinary teams
Diverse models of delivery
Bereavement programs
Educational programs
Patient and family education
Volunteer programs
Quality assessment/ performance improvement
Community outreach programs
Administrative policies
Information technology and data gathering
Methods for resolving ethical dilemmas
Personnel self-care initiatives
Source: National Quality Forum, , p. –.
institutional, or community level. Private practitioners will meet clients whose histories, current realities, or futures involve illness-, death-, or grief-related experiences, which often become the substance of therapeutic work. We hope that this text, while reflecting the learning and skill required of specialist providers, will also invite generalist clinicians to integrate an awareness of palliative social work. In this way, the profession actualizes a latent potential to enhance the care of patients and family members who may never require or request palliative care consultation.
The technicolor world of palliative care includes specific social work documents that are available to enrich and standardize practice excellence within the profession. For example, the National Association of Social Workers has established Standards for End-of-Life Care (NASW, a) and in collaboration with the National Hospice and Palliative Care Organization (NHPCO, ) developed a social work credential in hospice and palliative care (NASW, b) (for more information, please see Chapter ). In Canada, palliative social workers established practice competencies through a process of national consultation that included developing and validating the competencies and creating a plan for implementation (Bosma et al., ; Kelley et al., ). Available through the Canadian Hospice Palliative Care Association, these competencies are unique in that they evolved through a national consultation process which included interdisciplinary providers as well as recipients of services (for more information, see Chapter ). Since the inception of the Project on Death in America Social Work Leadership Awards in , there have been a plethora of projects, documents, and research validating professional values while enhancing the technicolor landscape within which the work of palliative care occurs (for more information, see Chapters , , and ).
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Oxford Textbook of Palliative Social Work: A Sectional Overview
The Oxford Textbook of Palliative Social Work has many objectives. As an inaugural edition in a specialty that is essentially interdisciplinary, our challenge has been to reflect the unique social work contribution and potential while respecting the shared and collaborative nature of palliative care. Our primary goal was to create a text that honors the practice wisdom and compassion of social workers while simultaneously informing this work whenever possible with evidence. We have engaged authors with a passion for their work and specialties, some who are emerging leaders, as well as many who have contributed not only to the evolution of palliative social work but also to the growth and integrity of the profession as a whole. With this in mind, the first section of this text is devoted to the historical development of social work. Readers will find “Social Work and Palliative Care: The Early
History” a critical commentary focusing on palliative care pioneer Dame Cicely Saunders. This is followed by an informative chapter on the emergence of the field by inspirational leader Bernice Catherine Harper.
In conceptualizing the text we chose to integrate culture within the chapters to reflect the integrated nature of the cultural experience of patients, families, and clinicians. “Patient and family narrative” is the phrase we have selected to describe the clinical situations that exemplify the work of palliative social work and to emphasize the persons beyond the diagnosis and the dilemmas that they live and struggle with throughout the course of illness.
The setting-specific section of the text sends an implicit message to practicing clinicians who might discover the potential benefits that palliative care can provide to their setting and their population while at the same time stimulating a reciprocal contribution to the evolving palliative care knowledge base.
An overarching goal has been to provide clinicians, educators, researchers, and policy makers with a resource that delineates the range of screening, assessment, and intervention skills and perspectives that inform and enrich the practice of palliative social work.
Chapters focusing on population- and illness-specific practice reflect the generic and all-encompassing focus of palliative care principles irrespective of the diagnosis, age, or social circumstance of persons living with life-threatening illness. These chapters bring a variety of populations into focus, including children, elders, inmates, veterans, rural and urban dwellers, and many others. Authors worked to delineate the challenges of each disease and the needs of specific populations to assist readers in grasping the context in which palliative care may be helpful to patients, their families, the intimate network, and the larger social system 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, and systems, creating an ongoing challenge to ensure that care is not compromised and that patients and families are not abandoned as they move through the disease trajectory. These chapters are co-authored with colleagues across disciplines, and we invite you to use these chapters to foster thoughtfulness and discussion about interdisciplinary relationships and to consider how teams and individuals negotiate the communal aspects of the work while respecting the unique expertise of each professional. Social workers in health care settings have survived consequent to their ability to share, so the challenge for our profession may be essentially different from that of nurses, physicians, or spiritual care providers who have varied histories and relationships to health care settings and teamwork. To this end, the collaborative practice section reflects the experiences of clinicians who have worked together to provide narratives and models that may serve to enhance and amplify the relationships which often go unexplored day after day, month after month.
The global section offers readers a glimpse into the experience of patients and families living around the world and into the practice of the social workers who serve them. While the scope of palliative care involves interventions along the continuum of illness, we see in the global section that in many places in the world limited resources force a focus on the essential needs of the imminently dying and their families. The creativity, clinical work, and cultural nuance integrated into these chapters demonstrate a richness and resourcefulness that emanates not from funds and budgets, but from social workers passionately committed to giving voice to their patients and families.
The ethics chapters discuss ethical principles specific to social work and explore various topics that infuse health care debate and clinical decision making across settings, diseases, and populations. The aim of this section is to enhance critical thinking and shared decision making while acknowledging that the complexity and profound nature of the questions may provoke conflict and shared struggle, which are often essential elements of authentic interdisciplinary team practice.
The last section provides an overview of professional issues relevant to this emerging specialty with a closing chapter that reflects the accumulated wisdom gleaned from the lived experiences of patients, families, and practitioners.
We hope that readers will find the Oxford Textbook of Palliative Social Work a useful tool to navigate their own “yellow brick road.” The text is a tribute to the values and principles that infuse the social work profession, to the patients, their families, partners, and friends whose lives and experiences are represented in the narratives and to the clinician wisdom presented within the chapters. Finally this is an invitation to our profession to integrate and build theory and research and enhance critical thinking both to inform and enrich current practice and advocacy and to contribute to the growth and capacity of palliative care to meet the common human needs of those who are impacted by lifethreatening illness.
references
Baum, L. F. (). The wonderful wizard of Oz. Chicago, IL: George M. Hill Company.
Bosma, H., Johnston, M., Cadell, S., Wainwright, W., Abernethy, N., Feron, A., . . . Nelson, F. (). Creating social work competencies for practice in hospice palliative care. Palliative Medicine, , –. doi:./
Cadell, S., Johnston, M., Bosma, H., & Wainright, W. (). An overview of contemporary social work practice in palliative care. Progress in Palliative Care, (), –.
Dirk, T. (n. d.) The wizard of Oz (). Retrieved from http:// www.filmsite.org/wiza.html
Hamilton, G. (). Theory and practice of social casework New York, NY: Columbia University Press.
Kelley, M. L., Kortes-Miller, K., Kerbashian, J., Cadell, S., Feron, A., Wainwright, W., . . . Thompson, M. (, May). Palliative end-of-life care: A dialogue about social work practice competencies and educational strategies for implementation. Panel presentation presented at the meeting of Canadian Association of Social Work Educators Annual Conference , Ottawa, ON.
National Association of Social Workers. (a). NASW standards for practice in palliative and end-of-life Care. Retrieved from http://www.naswdc.org/practice/bereavement/standards/ default.asp
National Association of Social Workers. (b). Certified Hospice and Palliative Social Worker (CHP-SW) and Advanced Certified Hospice and Palliative Social Worker (ACHP-SW). Retrieved from http://www.naswdc.org/credentials/credentials/ chpsw.asp
National Consensus Project for Quality Palliative Care. (). Clinical practice guidelines for quality palliative care (nd ed.). Retrieved from http://www.nationalconsensusproject.org/ guideline.pdf
National Hospice and Palliative Care Organization. (). Join NHPCO. Retrieved from http://www.nhpco.org/ia/pages/ index.cfm?pageid=
National Quality Forum. (). A national framework and preferred practices for palliative and hospice care quality: A consensus report. Retrieved from http://www.qualityforum.org/ Publications///A_National_Framework_and_Preferred_ Practices_for_Palliative_and_Hospice_Care_Quality.aspx
Perlman, H. H. (). Social casework: A problem solving process. Chicago, IL: University of Chicago Press. Richmond, M. E. (). Social diagnosis New York, NY: Free Press.
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This volume represents an emblematic collaboration that began in 2009 at the American Academy of Hospice and Palliative Care annual meeting. It was there that Betty Ferrell, PhD extended the invitation to meet with Tracy O’Hara, editor at Oxford University Press to propose a comprehensive palliative social work textbook. Since that fateful meeting, Betty’s unwavering mentorship and inspiration have both nurtured and challenged us.
We are eternally grateful to Lisa Kilburn, BA, for her boundless energy, professionalism and commitment to improving these pages. We are indebted to our Oxford team for their support and to the dedication of all who have sustained this effort.
We are humbled by the expertise and passion expressed by the contributors to this text. The social work practice and perspectives reflected in these pages honor the patients, families and colleagues who have enriched our work and our lives. Our hope is that the lessons so arduously learned and so generously shared will enable future social workers to integrate palliative care principles within their practice, education and research.
We dedicate this work to our sons, Douglas and Manne, in the hope that future generations will have reliable access to equitable and integrated care delivered by competent and compassionate healthcare providers who embody a personal commitment to excellence.
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contributors @£
Terry Altilio, MSW, LCSW, ACSW Social Work Coordinator Department of Pain Medicine & Palliative Care
Beth Israel Medical Center New York, NY
Becky A. Anderson, LMSW ACHP-SW Palliative Care Fellowship
VA Hospice and Palliative Care Center
VA Palo Alto Healthcare System Palo Alto, CA
Linda Anngela-Cole, MSW, PhD Assistant Professor School of Social Work University of Nevada, Reno Reno, NV
Amy Bauer, MSSA, LISWS Cleveland Clinic Health Systems Cleveland, OH
Diane Benefiel, MSW, LCSW
The University of Texas M.D. Anderson Cancer Center Houston, TX
Laura Benson RN, MS, ANP, AOCN Vice President, Medical Affairs (OSI) Oncology Melville, NY
Peter Beresford OBE, BA Hons Oxon, PhD, AcSS, FRSA, DipWP
Professor of Social Policy and Director of the Centre for Citizen Participation Brunel University Uxbridge, West London, United Kingdom
Mercedes Bern-Klug, PhD, MSW, MA Assistant Professor, School of Social Work Director, UI Aging Studies Program
John A. Hartford Geriatric Social Work Faculty Scholar University of Iowa Iowa City, Iowa
Susan Blacker, MSW, RSW Director
Cancer Services Planning & Performance St. Michael’s Hospital Toronto, Ontario, Canada
Joann N. Bodurtha, M.D., M.P.H. Professor, Department of Human and Molecular Genetics Virginia Commonwealth University Richmond, VA
Tracy Borgmeyer, LCSW St. John’s Regional Medical Center Joplin, MO
Harvey Bosma, MSW, PhD Candidate University of British Columbia Vancouver, BC, Canada
Karlynn BrintzenhofeSzoc, PhD, MSW, OSW-C Catholic University of America Washington, DC
Teri Browne, PhD, MSW
Health Social Work Services Research Assistant Professor College of Social Work University of South Carolina Irmo, SC
David M. Browning, MSW, BCD
Senior Research Scientist
Education Development Center
Senior Scholar
Institute for Professionalism and Ethical Practice
Children’s Hospital Boston Boston, MA
Karen Bullock, PhD, LCSW
Associate Professor
John A. Hartford Scholar
North Carolina State University Department of Social Work Raleigh, NC
Susan Cadell, MSW, PhD
Associate Professor, Director Manulife Centre for Healthy Living
Wilfrid Laurier University Ontario, Canada
John G. Cagle, MSW, PhD
Research Fellow
Cecil G. Sheps Center for Health Services Research University of North Carolina at Chapel Hill Chapel Hill, NC
Katharine M. Campbell, PhD, LCSW, OSW-c
Clinical Oncology Social Worker
Sylvester Comprehensive Cancer Center–Deerfield UHealth: University of Miami Health System Deerfield Beach, FL
Grace H. Christ, DSW, PhD
Professor, Columbia University School of Social Work New York, NY
Nancy F. Cincotta, MSW, MPhil, LCSW, ACSW, BCD
Director of Psychosocial Services
Camp Sunshine at Sebago Lake Casco, Maine
Adjunct Instructor
Department of Preventive Medicine
The Mount Sinai School of Medicine New York, NY
Elizabeth J. Clark, PhD, ACSW, MPH
Executive Director
National Association of Social Workers Washington, DC
Yvette Colón, PhD, ACSW, BCD
Director of Education and Support
American Pain Foundation Baltimore, MD
Maura Conry, Pharm D, MSW, LCSW, LSCSW
Kansas City, KS
Suzy Croft, BA Hons, CQSW
Diploma in Applied Social Sciences
Senior Scholar
Senior Social Worker
St. Johns Hospice London, United Kingdom
Ellen L. Csikai, MSW, MPH, PhD
Professor
Editor, Journal of Social Work in End-of-Life and Palliative Care
School of Social Work
The University of Alabama Tuscaloosa, AL
Louisa Daratsos, LCSW, ACSW
Psychosocial Coordinator Oncology/Palliative Care
New York Harbor Healthcare System
Brooklyn Campus; Doctoral Candidate Wurzweiler School of Social Work Yeshiva University
Elena Davis-Stenhouse, LCSW Palliative Care Specialist Denver, CO
Csaba L. Degi, MSW, PhD Babes-Bolyai University
Faculty of Sociology and Social Work
Cluj Napoca, Romania
Elena D’Urbano Licenciada Trabajadora Social Pallium Latinoamérica
Equipo de Cuidados Paliativos del Hospital del Gobierno de la Ciudad de Buenos Aires “Dr. Carlos B. Udaondo” Buenos Aires, Argentina
Sheila R. Enders, MSW
Associate Clinical Professor Department of Internal Medicine University of California, Davis
Betty R. Ferrell, PhD, MA, FAAN, FHPN
Research Scientist
Division of Nursing Research and Education Department of Population Sciences
City of Hope National Medical Center Duarte, CA
Iris Cohen Fineberg, PhD, MSW
International Observatory on End of Life Care
School of Health and Medicine
Lancaster University Lancaster, United Kingdom
Richard B. Francoeur PhD, MSW, MS Associate Professor School of Social Work
Adelphi University Garden City, NY
Daniel S. Gardner, PhD, LCSW
Assistant Professor
New York University
Silver School of Social Work
New York, NY
Julie Garrard BSW, MSW with Merit (University of Sydney)
Senior Social Worker and Researcher
Calvary Health Care
Sydney, Australia
Les Gallo-Silver, LCSW-R Associate Professor in Health Sciences/ Program Director of Human Services LaGuardia Community College Long Island City, NY
Sarah Gehlert, MA, MSW, LCSW
E. Desmond Lee Professor of Racial and Ethnic Diversity
The Brown School
Washington University in St. Louis St. Louis, MO
Susan Gerbino, PhD, LCSW Clinical Associate Professor
Silver School of Social Work
New York University Hartsdale, NY
Myra Glajchen, DSW Director
Institute for Education and Research in Pain and Palliative Care
Department of Pain Medicine and Palliative Care
Beth Israel Medical Center
New York, NY
William Goeren, LCSW-R, ACSW, BCD Director of Men's Cancers Program
Senior Clinical Supervisor CancerCare National Office
Jaime Goldberg, MSW Palliative Social Worker
VA Greater Los Angeles Healthcare System Los Angeles, CA
Hollye Harrington Jacobs, RN, MS, MSW Vice President of Programs
Dream Foundation Santa Barbara, CA
Sue Hearn BSW (UNSW) Grad Cert Palliative Care (Edith Cowan) & Loss & Grief (Univeritsy of Queensland)
Manager Social Work/Bereavement Coordinator
HammondCare Health & Hospitals Greenwich Sydney Australia
Susan Hedlund, MSW, LCSW Director of Social Services
Hospice of Washington County Faculty-Portland State University Graduate School of Social Work Portland, OR
Christopher M. Herndon, PharmD, BCPS
Assistant Professor
Southern Illinois University School of Pharmacy
Edwardsville, IL
Philip C. Higgins, MSW, LICSW Director of Palliative Care Outreach
Clinical Social Worker
Pain & Palliative Care Service
Dana Farber/Brigham & Women's Cancer Center Boston, MA
Jimmie C. Holland, MD
Wayne E. Chapman Chair in Psychiatric Oncology
Attending Psychiatrist
Department of Psychiatry & Behavioral Sciences
Memorial Sloan-Kettering Cancer Center
New York, NY
Jennifer Jane Hunt, MA
Independent Palliative Care and Bereavement Consultant Avondale, Harare, Zimbabwe
Barbara Ivanko
Chief Operating Officer
Hospice of Palm Beach County West Palm Beach, FL
Diane R. Jackson, MSW, LCSW, BCPS, CPE
Major, US Air Force
Belleville Family Health Center Belleville, IL
Aarti Jagannathan MA, M.PHIL
National Institute of Mental Health and Neurosciences (NIMHANS)
Koramangala, Bangalore, India
Meaghen Johnston, MSW, PhD Candidate University of British Columbia Calgary, Alberta, Canada
Barbara L. Jones, PhD, MSW
University of Texas at Austin School of Social Work Austin, TX
Srilatha Juvva, PhD
Tata Institute of Social Sciences (TISS) Deonar, Mumbai, India
Lana Sue Ka’opua, MSW, LSW(HI), DCSW Associate Professor & Chair Health Concentration Director
Ka Lei Mana’olana Breast Health Project Honolulu, HI
Julia Kasl-Godley, PhD
Staff Psychologist
VA Hospice and Palliative Care Center
VA Palo Alto Health Care System (B) Palo Alto, CA
Sheila G. Kennedy, MSW, LCSW Hospice Coordinator
VA Hospice & Palliative Care Center Palo Alto, CA
Jeanne Kerwin, DMH, CT Ethics & Palliative Care Coordinator
Overlook Hospital Summit, NJ
Yukie Kurihara, LMSW, LMT Division of Palliative Medicine Shizuoka Cancer Center Nagaizumi, Shizuoka, Japan
Cecilia Lai Wan Chan, BsocSc, MsocSc, PhD, RSW Si Yuan Professor in Health and Social Work Director, Center on Behavioral Health University of Hong Kong Hong Kong, China
Robin Rudy Lawson, LMSW Tampa, FL
Carrie Lethborg, PhD, MSW, BSW Oncology Department
St. Vincent’s Hospital Victoria Parade, Fitzroy, Victoria, Australia
John F. Linder, MSW, LCSW Specialist, Department of Internal Medicine Division of Hematology & Oncology University of California, Davis
A. Marlene Lockey, MSSW, LCSW The University of Texas M.D. Anderson Cancer Center Houston, TX
Marie C. Lynn, MSW, LMSW Borgess Visiting Nurse and Hospice Kalamazoo, MI
Valerie Maasdorp, B Soc Sc (SW), CT (Adec) Island Hospice & Bereavement Service Belgravia, Harare, Zimbabwe
Anne Martin, PhD, LCSW Memorial Sloan Kettering Cancer Center Department of Social Work Clinical Supervisor/Program Manager New York, NY
Lucia McBee, LCSW, MPH, CYI Jewish Home Lifecare New York, NY
Andrew J. McCormick, PhD, MSW Harborview Medical Center
Seattle, WA
Kelly M. McHenry MSW San Diego, CA
Patricia McKinnon, BA Dip Soc Wk Grad Cert Social Work (Dying, Death & Palliative Care) with Merit, DSW research student (University of Sydney) Senior Palliative Care Social Worker Sacred Heart Hospice Sydney, Australia
Carolyn Messner, DSW, MSW, LCSW-R, BCD Director of Education & Training CancerCare
New York, NY
Margaret Meyer, MSW, MBA, LCSW The University of Texas M.D. Anderson Cancer Center Houston, TX
Jaclyn Miller, MSSW, LCSW, PhD Associate Professor Emeritus School of Social Work Virginia Commonwealth University Richmond, VA
Pamela J. Miller, MSW, PhD Professor of Social Work School of Social Work Portland State University Portland, OR
John Mondanaro, MA, LCAT, MT_BC, CCLS Beth Israel Medical Center New York, NY
Kennan Moore, MSW, LCSW Palliative Care Specialist Denver, CO
Teresa Moro, MSW, Phd(c) University of Chicago Glenview, IL
Colleen M. Mulkerin, MSW, LCSW Director Palliative Medicine Consult Service Hartford Hospital Hartford, CT
Susan Murty, PhD School of Social Work University of Iowa Iowa City, IA
Rebecca Myers, MSW, ACSW Director, External Relations National Association of Social Workers Washington, DC
J. J. Nadicksbernd, MSW Institute for Palliative Medicine San Diego Hospice San Diego, CA
Stacey Needleman, MA, MSW, LCSW, ACSW Senior, Licensed Clinical Social Worker The Joseph M. Sanzari Children’s Hospital Hackensack University Medical Center Hackensack, NJ
Holly Nelson-Becker, MSW, PhD, LCSW, ACSW, DCSW Associate Professor University of Kansas School of Social Welfare Lawrence, KS
Becky Niemeyer, LCSW Palliative Care Specialist Denver, CO
Patricia O'Donnell, PhD, LICSW, MSW Director, Center for Ethics Inova Health System Fairfax, VA
Stacy F. Orloff, EdD, LCSW, ACHP-SW Suncoast Hospice Clearwater, FL
Shirley Otis-Green, MSW, LCSW, ACSW, OSW-C Senior Research Specialist Division of Nursing Research and Education City of Hope National Medical Center Duarte, CA
Guadalupe R. Palos, RN, LMSW, DrPH The University of Texas M. D. Anderson Cancer Center Houston, TX
Debra Parker Oliver, PhD, MSW Associate Professor, University of Missouri Family and Community Medicine Columbia, MO
