This year we celebrate the 5^th National Health Care Decisions Day (NHDD), a nationwide campaign to increase awareness and foster empowerment among Americans about their planning for and full participation in personal, family and community health care decision making processes. Even in the 5 years since the inception of NHDD, we have witnessed change in how we as social workers, in collaboration with other members of the health professions, conceptualize these processes and help to translate them into practice in our everyday work in the field. In these brief remarks recognizing the importance and impact of NHDD, I will focus on critical aspects of the NHDD change movement including community organizing, social solidarity and social justice.

You will hear and read much information in the next few weeks about NHDD that encourages individuals to complete health care proxies and begin meaningful conversations with their loved ones about their values, preferences and health care choices now while they have capacity, as well as in anticipation of a time when they will no longer have capacity. I certainly echo and support this call for action. Many of you serve in roles in which you actively engage individuals and families in these discussions and support them in navigating what may commonly be uncharted territory for those who have never entertained these discussions. For example, choosing a health care agent is an emotion-laden decision process often fraught with conflict. Sometimes spouses may not be the best candidates for appointment as agent for any number of reasons, and individuals may be more comfortable turning to an adult child or even a close friend for the purposes of this trusted role. We should also remain attuned to the complexities that arise from societal norms for the surrogate whose ethical responsibilities to the individual (principal) who made the appointment are not always co-extensive with how such responsibilities are defined under the law. In a recent chapter in the 2012 Hospice of Foundation of America book edited by Dr. Ken Doka and colleagues, I wrote the following: “…the surrogate’s relation of trust to the [nursing home] resident is not co-extensive with the grant of legal authority. Moral obligations to the resident arise with the investment of trust in the surrogate. The surrogate is valued because he or she is trusted and is called up to serve the suffering individual and relieve his or her suffering” (Morrissey, 2012, p. 79). Strengths-based approaches to these process conversations and conflict negotiations in multiple areas of health care decision making, especially within families, are traditional and time-honored roles of social work in the health systems and in community-based care.

I would like to turn now to what you may not hear or may not be transparent about NHDD, and what I view as an equally important part of the movement, and that is, the goals that focus on community organizing, community education, and building community capacities for social solidarity and social justice. To begin with, there is some evidence in the literature that utilization of advance care planning tools is higher among whites and populations with higher income. Some of these studies have focused on the living will in particular as a planning tool which continues to have limitations as a tool. Those with higher incomes have the resources to go to the offices of elder law attorneys and seek professional guidance on their future health care planning. But we know that this is not necessary, and not what we advocate for in providing community education. While there is some variation from state to state, we aim to deliver a clear and simple message to everyone that it is easy – and best practice — to complete a health care proxy, there are few legal formalities to be followed, and no formal legal assistance required or needed in most cases. Instead of focusing on legal formalities or what we can describe as the transactional nature of the health care agent appointment, we as social workers can be instrumental in shifting the focus to what is more appropriately germane to the health care decision making process – the interpersonal, relational, social, emotional, and cultural meanings of the decision processes.  This is the context in which conversations about planning for one’s future health care or living with serious illness need to take place. Social workers are well-equipped by virtue of their extensive training and education in social ecology to understand the multidimensional lived experiences of the person-in-environment and embedded in personal, family, and social systems. Therefore, NHDD is essentially a community health education campaign that calls for community organizing skills, community planning, and maximizing the engagement of the community in creating supportive environments that will improve the public health and prevent suffering and the detrimental consequences of progressive chronic illness.

This paradigm shift in how we understand health care decision making is radical because it imposes a much greater obligation on the community to assume shared responsibility for its members, especially vulnerable members of the society who may not have the personal, social or economic resources to plan adequately for their care or operationalize their choices due to barriers such as health literacy, and language and cultural differences and practices that may not be well-understood in our Western society.  Health care decision making can no longer be viewed solely as a task of the individual and as an individual responsibility. We are situated now in shared decision making processes that that continue to give deference to ethical principles of self-determination and informed consent, yet involve conversations that bring together the individual decision maker with such person’s meaningful others including family and caregivers, health care practitioners, spiritual counselors, the person’s health care agent if the person has so consented, and the community. Hospice and palliative care have given us the model of the patient and family as the social unit of care. We must build on this very successful model in providing education to our communities about how we may provide adequate social support to older adults with dementia, frail elderly persons, persons who are isolated in the community, those who are suffering with serious chronic illness, and institutionalized members of the society including vulnerable nursing home residents and aging prisoners.

What does it mean to stand in social solidarity with others as part of NHDD?

Solidarity rights as second-generation, positive rights have been recognized as a core notion embedded in the Universal Declaration of Human Rights (1948; Wronka, 2008). In a recent report entitled, Solidarity: Reflections on an Emerging Concept in Bioethics, Prainsack and Buyx (2011) describe the genesis of the concept of solidarity and its roots in modern communitarianism, or approaches that put the collective or community at the center of social life including promotion of social cohesion, shared values and goals, and pursuit of a common good. Prainsack & Buyx (2011) also comment that solidarity typically has a meaning of sharing costs to benefit others including financial and emotional costs. As the authors suggest, while solidarity may overlap to some extent with concepts such as responsibility, moral accountability, trust, reciprocity, charity, and altruism, it has its own unique meanings that may in part embrace some of the meanings suggested by these former concepts but stakes out new grounds of meaning as well.  For our purposes and focus on the NHDD campaign, the concept of solidarity resonates with the goals of inviting communities to carry some of the costs of planning in advance for improved public health for all members of the society, and relieving the burdens of serious illness. Standing in solidarity invokes a call to action and to provide mutual assistance that goes beyond what we traditionally understand as empathy, although the provision of empathic, compassionate care on the ground in working with patients and families would be a demonstration of solidarity. Solidarity may have multiple meanings in the context of health care decision making such as making timely referrals to hospice and palliative care for those who are seriously ill, promoting health literacy, working toward the elimination of health disparities, hand-feeing a loved one who can no longer eat on his or her own, or honoring the dignity and personhood of those who may not be able to advocate for themselves due to diminished capacities.  At the systems level, public deliberation and discourse about solidarity will involve consideration of just allocation of resources so that no one will die alone or in pain and suffering.

As we move forward into the next decades, we will deepen our understanding of how we as social workers and as members of our communities may draw upon the traditions and values of social work by giving full life to social solidarity and social justice in the practice of making good health care decisions for ourselves and with others to whom we stand in ethical relation.

Thank you for the opportunity to share these thoughts with you in honor of National Health Care Decisions Day.

Morrissey, MB (2012). Surrogate decision making: The surrogate’s value. In Doka, K. J., Tucci, A. S. , Corr, C. A., & Jennings, B., (Eds.), End-of-life ethics: A case study approach (pp. 63-84). Washington, DC: Hospice Foundation of America.

Prainsack, B., & Buyx, A. (2011). Solidarity: Reflections on an Emerging Concept in Bioethics. Wiltshire, UK: Nuffield Foundation.

United Nations (1948). The Universal Declaration of Human Rights.

Wronka, J. (2008). Human rights and social justice: Social action and service for the helping professions. Thousand Oaks, CA: Sage.

 

This new issue contains the following articles:

EDITOR’S INTRODUCTION
Ellen L. Csikai
Pages: 1-2
DOI: 10.1080/15524256.2012.650668

Reflection
Problem Solving Interventions: An Opportunity for Hospice Social Workers to Better Meet Caregiver Needs
Debra Parker Oliver, Karla Washington, George Demiris, Elaine Wittenberg-Lyles & Hannah Novak
Pages: 3-9
DOI: 10.1080/15524256.2012.650669

Invited Article
Exploring Professional Boundaries in End-of-Life Care: Considerations for Hospice Social Workers and Other Members of the Team
Sara Sanders, Karen Bullock & Crystal Broussard
Pages: 10-28
DOI: 10.1080/15524256.2012.650671

Peer-Reviewed Articles
Just Give Me Hope: Lived Experiences of Medicaid Patients With Advanced Cancer
Tara J. Schapmire, Barbara A. Head & Anna C. Faul
Pages: 29-52
DOI: 10.1080/15524256.2012.650672

Interdisciplinary Hospice Team Processes and Multidimensional Pain: A Qualitative Study
Michele Dugan Day
Pages: 53-76
DOI: 10.1080/15524256.2011.650673

Using a LISTSERV™ to Develop a Community of Practice in End-of-Life, Hospice, and Palliative Care Social Work
Susan A. Murty, Kaleigh Gilmore, Karen A. Richards & Terry Altilio
Pages: 77-101
DOI: 10.1080/15524256.2011.652857

Book Reviews
End-of-Life Care & Addiction: A Family Systems Approach, by S. Y. Bushfield & B. DeFord
Carol S. Drolen PhD
Pages: 102-104
DOI: 10.1080/15524256.2012.650674

Transforming Palliative Care in Nursing Homes: The Social Work Role, edited by M. Bern-Klug
Keith A. Anderson MSW, PhD
Pages: 105-107
DOI: 10.1080/15524256.2012.650675

Remembering Yesterday, Caring Today: Reminiscence in Dementia Care, a Guide to Good Practice, by P. Schweitzer & E. Bruce
Katherine Windell Eggers MSW
Pages: 108-110
DOI: 10.1080/15524256.2012.650693

 

Read a review of Having Your Own Say in this post by Laura Landro in the Health Blog of the Wall Street Journal.

A primary example offered by the book is Gundersen’s Respecting Choices program. Based in LaCrosse, WI, Gundersen Health System is part of the Coalition to Transform Advanced Care, a movement to increase the number of health systems that offer care at home instead of hospitalization, avoiding unwanted treatments while providing comfortable pain and symptom management. Gundersen experts propose methods that would improve quality of life and satisfaction for individuals with advanced illness while cutting an estimated $25 billion in annual health care costs.

Other systems featured include Honoring Choices Minnesota, California’s Sutter Care at Home, Australia’s Respecting Patient Choices program, and the Aetna Compassionate Care Program. A chapter by palliative care experts R. Sean Morrisson and Diane Meier addresses the value of palliative care as it pertains to patient outcomes. The book also features individual perspectives on advance care planning from patients and families.

Reviews on the book from journalists, authors, politicians and experts in the field of end-of-life, hospice and palliative care:

“Our healthcare system routinely fails people facing the end of life. But the authors of this book offer hope that this can change. More than that, they show how. No one has been more effective in demonstrating how much better healthcare can be.”  —Atul Gawande, New Yorker staff writer and author of The Checklist Manifesto

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“In this transformative time for healthcare in America, these contributors and editors have given us a fresh and illuminating perspective. I would encourage every state and federal lawmaker interested in informed health policy to read this book carefully.” —Former Senator Tom Daschle

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“We all experience it…an older loved one managing a number of complex health issues suddenly swept into the oft swirl of treatments and interventions that confuse and sometimes seem devoid of choice and voice of that person. The end result of this experience can produce inadvertent outcomes. This set of thoughtful and knowledgeable authors take a 360 degree view of the science, knowledge, policy, practice and personal experience that can help to improve the ‘system’ and enhance, if not assure, that our preferences and goals can be woven in the care to produce a net result of greater dignity, care quality and even mitigation of unneeded costs both personally and societally.” —Jennie Chin Hansen, RN, MS, FAAN, CEO,  American Geriatrics Society

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“Having Your Own Say is an eloquent guide from the pioneers who are leading us all on a more humane, sensitive, and sensible path through the final journey of life.” —Ellen Goodman, Washington Post longtime syndicated columnist

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“When a loved one is seriously ill, our fragmented and impersonal healthcare system often fails to offer the kind of care we all would want. This important volume shows that there is a better way. I recommend it for everyone who believes, as I do, that we can do better in caring for those with advanced illnesses, and that we can afford to do this if we do it right.” —John Rother, president and CEO, National Coalition on Health Care

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“Most Americans want to have control over decisions made regarding their care. This book provides proven solutions for making sure your voice is heard even when you may be too ill to speak for yourself.” —Frank Luntz,New York Times best-selling author

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“There are few issues facing our country, our economy, our healthcare system, and our families that are more pressing than this one. We must take bold and decisive action to prepare ourselves to face this future – our futures – by doing what works, empowering the public, educating health professionals, and creating policy change. This book presents a blueprint for success that should be heeded.”  —Nancy Brown, CEO, American Heart Association, and co-chairman, Coalition to Transform Advanced Care Steering Committee

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“As the original provider of patient-centered, palliative care, hospice providers have found that high-quality care – delivered in all settings – begins with a conversation with the patient and their loved ones. This collection of articles demonstrates the essential character of knowing and then honoring the goals and desires of the patient as we provide interdisciplinary care that treats the whole person and not just the illness.”  —Don Schumacher, president and CEO, National Hospice and Palliative Care Organization

The position is approximately 10 hours/week, and the schedule is negotiable, suited for a location-independent professional who has the flexibility to travel and represent SWHPN at a small number of events annually. Send CVs and cover letters to  sarah@swhpn.org.

Primary Job Responsibilities

Membership

• Manage the member database of an established organization
• Develop and attain short- and long-term membership goals
• Coordinate and implement strategies, activities, programs and promotions
• Provide prompt and direct customer service to members, donors and prospects
• Coordinate membership correspondence
• Oversee records and prepare membership reports

Communications

• Advance SWHPN’s brand identity, professional presentation and audience
• Maintain functionality of SWHPN website
• Assess with content development (e-newsletter, brochures, downloads, etc.)
• Assist in maintaining SWHPN blog
• Assist with social media strategies
• Help plan and promote SWHPN events as needed

Administration

• Serve as the main point of contact for SWHPN
• Coordinate teleconferences, take notes, and prepare minutes
• Assist with webinars, downloads and other SWHPN products
• Keep all files well organized

Qualifications and Requirements:

• Bachelors Degree or higher preferred
• Must have substantial experience in online communications, marketing & outreach
• Organizational, communication, problem solving and management skills
• Excellent computer and web skills
• A good understanding of social work and/or care at the end of life preferred
• Knowledge of web editing software and WordPress content management software
• Graphic design, web design and video editing experience a plus

We at the Social Work Hospice & Palliative Care Network (SWHPN) and Palliative-SW were saddened by the news of the passing of Mary Labyak, a dedicated social worker whose long and successful career has helped shape the field of social work in hospice and palliative care.

“Mary’s death is a huge loss for us.  We are coping well and I know
that we’ll continue living her vision.”

– Stacy F Orloff Ed. D., LCSW, ACHP-SW

SWHPN Board Member

Vice President, Palliative Care and Community Programs

Other national figures have said this about Mary:

“Mary was at the heart and center of every significant issue relating to end-of-life care in the past 30 years.  A person like Mary comes along once in a lifetime.”

“Mary was a guiding force in end-of-life care.  The best way to remember her is to honor all she taught us about caring for others- for our community. The legacy lives.”

Click on this link to be directed to Mary’s legacy page at Suncoast Hospice.  http://www.thehospice.org/marylabyak

After spending his career working in end-of-life care, David was diagnosed with stage 4 nasal pharyngeal carcinoma in November 2011. After his diagnosis, David started a blog to chronicle his illness and teach others about his experience as a patient. David has so far posted five videos and has received responses from people across the U.S. and in seven different countries. To learn more about David’s Cancer Videoblog, read our post from Friday, February 3, 2012.

“(The) big surprise for me, personally, is that I’m not afraid to die. I thought I would be. I’m a gerontologist. I studied the frail all my life,” David said in an interview with Charlie Rose and Erica Hill.

David explained his reasoning in taking his cancer diagnosis as an opportunity to teach: ”I’ll tell you what my 92-year-old mentor told me. This is going to be a war for me. David versus cancer. A battle. And that would have been a terrific waste of time. Instead, he said, ‘Don’t panic, don’t struggle. Relax and accept it. It is what it is. You know none of us gets out of this alive.’ And so, instead of wasting my time trying to battle this silent killer, I decided to — it’s a time to teach. If there ever was a time to teach, this is it.”

On the support he’s received from his wife Debra, who has been filming his cancer journey, David said, “Debbie is the caregiver. It’s all the caregivers out there who are suffering.” Like her husband, Debra Parker Oliver is a professor at the University of Missouri, and she is also a board member of the Social Work Hospice & Palliative Care Network (SWHPN).

David and Debbie relax before the first chemo treatment

For months now, we at SWHPN have been following David’s Cancer Videoblog, a chronicle of David Oliver’s journey as a cancer patient diagnosed with nasal pharyngeal carcinoma. Although David’s blog is an invaluable teaching tool for patients, students, family members and others, we didn’t just happen on this blog by accident. David, a medical school professor at the University of Missouri, is the husband of SWHPN Board Member Debra Parker Oliver, a hospice social worker currently teaching and researching at the University of Missouri School of Medicine. Both David and Debra have dedicated their professional careers to helping others understand what they are now facing in their own lives.

David has taken his diagnosis as a good teacher would, as an opportunity to teach others about his treatment process. Tying in his loyalty to his school and favorite football team, he appears in each video sporting Mizzou team gear and jokes often about the “puke buckets” he’s keeping close, each enblazoned with the logos of his rival teams, the Oklahoma Sooners and the Kansas Jayhawks. Assisted by his filmographer Debra, David’s videos begin with his announcement to colleagues of his diagnosis and take us through his first head shaving, his first chemotherapy treatment, the after effects of the treatments, his dialogues with his doctors, the support he’s receiving from family and loved ones, and, best of all, an up moment when his scan results come back to show shrinkage. All of these are sprinkled with David’s signature warmth, Midwestern character and appreciation for a good laugh.

With the posting of his fifth video, entitled I am not alone: Social Support and Cancer, David’s blog has captured the attention of national media. Picked up by an Associated Press (AP) writer yesterday, David’s story has now been featured in more than 800 online articles, including this article in the Washington Post. Moreover, David and Debra have been invited to appear on Charlie Rose in a live interview this Monday, February 6, and in a feature on ABC World News with Diane Sawyer Monday evening. This attention is well deserved for the straight-talking, inspirational, often humorous and always informative videos David has created. We will post videos and links after the reports air on Monday.

In the meantime, David, Debra, and family, we’re watching, and we look forward to your next post!

This new issue contains the following articles:

Editor’s Introduction
Ellen L. Csikai
Pages: 281-282
DOI: 10.1080/15524256.2011.623454

Reflections
The Growth of Research in End-of-Life Care in Nursing Homes
Debra Parker Oliver
Pages: 283-285
DOI: 10.1080/15524256.2011.623483

Reflections on Brain Death and “Process”
Wendy Walters
Pages: 286-290
DOI: 10.1080/15524256.2011.623485

Invited Articles
Developing the Science of End-of-Life and Palliative Care Research: National Institute of Nursing Research Summit
Ellen L. Csikai
Pages: 291-299
DOI: 10.1080/15524256.2011.623457

Health Care Costs in End-of-Life and Palliative Care: The Quest for Ethical Reform
Bruce Jennings MA & Mary Beth Morrissey
Pages: 300-317
DOI: 10.1080/15524256.2011.623458

Peer-Reviewed Articles
Stress and Grief Among Family Caregivers of Older Adults With Cancer: A Multicultural Comparison From Hawai‘i
Linda Anngela-Cole & Mandee Busch
Pages: 318-337
DOI: 10.1080/15524256.2011.623460

Cultural Vulnerability and Professional Narratives
Yasmin Gunaratnam
Pages: 338-349
DOI: 10.1080/15524256.2011.623464

The Assimilation of Problematic Experiences Sequence: An Approach to Evidence-Based Practice in Bereavement Counseling
John Wilson MSc, BACP Accred.
Pages: 350-362
DOI: 10.1080/15524256.2011.623468

Surviving Critical Illness: A Case Study in Ambiguity
Liz B. Johnston
Pages: 363-382
DOI: 10.1080/15524256.2011.623471

Interdisciplinary Perceptions of the Social Work Role in Hospice: Building Upon the Classic Kulys and Davis Study
Dona J. Reese
Pages: 383-406
DOI: 10.1080/15524256.2011.623474

Book Reviews
A Review of: “Welch, F. S., Winters, R., & Ross, K. (Eds.). (2009). Tea With Elisabeth: Tributes to Hospice Pioneer Dr. Elisabeth Kübler-Ross.”
Cynthia Forrest Assistant Professor PhD, MSW, LMSW
Pages: 407-408
DOI: 10.1080/15524256.2011.623476

A Review of: “Di Ciacco, J. A. (2008). The Colors of Grief: Understanding a Child’s Journey Through Loss From Birth to Adulthood.”
Shebby Neely-Goodwin Assistant Professor PhD, MSW, LMSW
Pages: 409-411
DOI: 10.1080/15524256.2011.623479

A Review of: “Balk, D., & Corr, C. (Eds.). (2009). Adolescent Encounters With Death, Bereavement, and Coping.”
Jacquelyn Lee LCSW
Pages: 412-414
DOI: 10.1080/15524256.2011.623480

Miscellaneous
Editorial Board EOV
Pages: ebi-ebii
DOI: 10.1080/15524256.2011.647605

Read the full announcement here.

2nd Prize: $300
Barbara L. Jones, Ph.D., MSW, USA
Psychosocial Needs of Children with Cancer and Their Families at the End of Life: Insights from Social Work

3rd Prize: $200
Isabel Torres-Vigil, Dr.P.H., USA
Perceptions About Parenteral Hydration in the Last Weeks of Life: A Survey of Palliative Care Physicians in Latin America

Best Poster from Africa - $300 sponsored by FHSSA
Richard A. Powell, Uganda
Public Preferences and Priorities for End-of-Life Care in Namibia

Best Poster in Nursing: 1 year subscription sponsored by International Journal of Palliative Nursing
Barbara M. Raudonis, PhD, RN, USA
Trajectories of Cytokines and Chemotherapy-Related Fatigue in Breast Cancer

Honorable Mention:

Sung Eun-Choi, South Korea
The Effects of Self-Selected Music Listening on Moon Change and Stres of Terminal Cancer Patients Based upon Their Pain Degrees

Kristin Huang BA, USA
Assessment of the Face Validity of Two Pain Scales in Kenya

Please take a few minutes to respond to a survey about the use of life review interventions in hospice care by clicking on the link below or cut and paste into your browser. Please do so by December 15, 2011.

 
http://www.surveymonkey.com/s/SocialWorkersLifeReviewIntervention

 

Your responses will help in the development of research aimed at expanding the reach of this type of intervention with serious ill individuals and their caregivers.
A summary of the major results will be posted on this site after completion of the study.

 

Thank you for your participation!

 

Ellen L. Csikai, Ph.D.

Professor, School of Social Work, The University of Alabama

Editor of the Journal of Social Work in End-of-Life and Palliative Care