David’s Cancer Journey Gets National Attention
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!
October 2011 Issue of Journal of Social Work in End-of-Life and Palliative Care Now Available
Journal of Social Work in End-Of-Life & Palliative Care, Vol. 7, No. 4, 01 Oct 2011 is now available online on Taylor & Francis Online. Members of the Social Work Hospice & Palliative Care Network (SWHPN) have free online access to the journal. Not a member? Join now.
This new issue contains the following articles:
Editor’s Introduction
Ellen L. Csikai
Pages: 281-282
DOI: 10.1080/15524256.2011.623454Reflections
The Growth of Research in End-of-Life Care in Nursing Homes
Debra Parker Oliver
Pages: 283-285
DOI: 10.1080/15524256.2011.623483Reflections on Brain Death and “Process”
Wendy Walters
Pages: 286-290
DOI: 10.1080/15524256.2011.623485Invited 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: 10.1080/15524256.2011.623457Health Care Costs in End-of-Life and Palliative Care: The Quest for Ethical Reform
Bruce Jennings MA & Mary Beth Morrissey
Pages: 300-317
DOI: 10.1080/15524256.2011.623458Peer-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: 10.1080/15524256.2011.623460Cultural Vulnerability and Professional Narratives
Yasmin Gunaratnam
Pages: 338-349
DOI: 10.1080/15524256.2011.623464The Assimilation of Problematic Experiences Sequence: An Approach to Evidence-Based Practice in Bereavement Counseling
John Wilson MSc, BACP Accred.
Pages: 350-362
DOI: 10.1080/15524256.2011.623468Surviving Critical Illness: A Case Study in Ambiguity
Liz B. Johnston
Pages: 363-382
DOI: 10.1080/15524256.2011.623471Interdisciplinary Perceptions of the Social Work Role in Hospice: Building Upon the Classic Kulys and Davis Study
Dona J. Reese
Pages: 383-406
DOI: 10.1080/15524256.2011.623474Book 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: 10.1080/15524256.2011.623476A 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: 10.1080/15524256.2011.623479A Review of: “Balk, D., & Corr, C. (Eds.). (2009). Adolescent Encounters With Death, Bereavement, and Coping.”
Jacquelyn Lee LCSW
Pages: 412-414
DOI: 10.1080/15524256.2011.623480Miscellaneous
Editorial Board EOV
Pages: ebi-ebii
DOI: 10.1080/15524256.2011.647605
2011 International Palliative Care Network Poster Award Winners
The winners of the International Palliative Care Network Poster Awards have been announced. SWHPN Board Member Barbara Jones is the recipient of the 2nd Prize for her poster on the psychosocial needs of children with cancer and their families. Congratulations to Barbara and all the award recipients!
Read the full announcement here.
Görög I, Ph.D., Romania
The Impact of an Incurable Illness on Patients’ Personal Development
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 Complete This Survey on Use of Life Review Interventions
Attention Hospice Social Workers: Please see the message below from SWHPN Board Member Ellen Csikai.
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
Registration Open for SWHPN Webinar: From Practice to Publication
From Practice to Publication: A Discussion with Ellen Csikai
(Editor of The Journal of Social Work in End-of-Life and Palliative Care)
A SWHPN Webinar
Ellen Csikai
Featuring: Ellen Csikai, LCSW, MPH, PhD
Professor, School of Social Work
The University of Alabama
Moderator: Grace Christ, SWHPN Chair
Thursday, December 8, 2011
1:00-2:00 PM Eastern
This webinar will explore:
● The practical nuts and bolts of translating practice experiences into manuscripts for submission to an academic journal
● The specific types of manuscripts and topics featured in recent issues of The Journal of Social Work in End-of-Life and Palliative Care
● The process of submitting, revising and publishing peer-reviewed manuscripts in social work and other professional journals featuring innovative practice in end-of-life and palliative care
● Resources for practitioners, researchers and educators preparing manuscripts for publication
Ellen Csikai, LCSW, MPH, PhD, is the Editor of The Journal of Social Work in End-of-Life and Palliative Care, Professor of Social Work at the University of Alabama, and a board member of the Social Work Hospice & Palliative Care Network (SWHPN). She has published extensively on issues relating to social work in end-of-life care, health care, bioethics, and professional ethics. Csikai was previously a recipient of the Social Work Leadership Development Award from the Open Society Institute’s Project on Death in America and was a key advisor in the formation of SWHPN. She holds PhD, MPH, MSW and BSW degrees from the University of Pittsburgh.
Register today. This webinar is $15 for SWHPN members and $45 for nonmembers.
Registration Open for Emerging Issues in Palliative Care: Practice, Policy & Research
Registration is now open for this SWHPN co-hosted conference:
“Emerging Issues in Palliative Care: Practice, Policy & Research”
Tuesday, December 6, 2011 from 6PM-8PM
Cardozo Law School
55 Fifth Avenue @ 12th Street, NYC Room 204
CO-SPONSORS
Yeshiva University, Wurzweiler School of Social Work
Social Work Hospice and Palliative Care Network (SWHPN)
Westchester/New York State Southern Region Collaborative for Palliative Care
Columbia University School of Social Work
Fordham University Graduate School of Social Service
Program
(Registration and refreshments begin at 5:15)
Gary L. Stein, JD, MSW, Associate Professor, Wurzweiler School of Social Work – Yeshiva University; Vice Chair, Social Work Hospice and Palliative Care Network, “Opportunities and Challenges for Palliative Care”
Mary Beth Morrissey, Ph.D, MPH, JD, Post-Doctoral Associate, Hartford Risk and Resilience Project, Fordham University Graduate School of Social Service; Chair, Collaborative for Palliative Care,“Interprofessional Ethics Training: New Palliative Care Laws and Systems of Care”
Fran Eichholz Heller, MSW, Senior Social Worker, Palliative Care Consult Service, NewYork Presbyterian/Columbia University Medical Center, “From the Trenches: Integrating Policy into Practice”
Grace H. Christ, PhD, Professor, Columbia University School of Social Work; Chair, Social Work Hospice and Palliative Care Network, “9/11: Lessons Learned About Long-Term Survivorship”
Fee: $25
Students (with valid ID): No charge, but must pre-register.
Fee must be paid no later than date of event.
CEUs: 2 hours (NYS and NJ)
Click here to access the registration form online.
New Issue of Journal of Social Work in End-of-Life & Palliative Care Available Now
Journal of Social Work in End-Of-Life & Palliative Care, Vol. 7, No. 2-3, 01 Apr 2011 is now available online on Taylor & Francis Online. Members of the Social Work Hospice & Palliative Care Network (SWHPN) have free online access to the journal. Not a member? Join now.
The new issue contains the following articles:
Editor’s Introduction, Ellen L. Csikai
Pages: 111-112, DOI: 10.1080/15524256.2011.593147
Reflections
Death Part Three (It Never Ends), Mary Kennan Herbert
Pages: 113-113, DOI: 10.1080/15524256.2011.593148Bereavement Therapy, Mary Kennan Herbert
Pages: 114-114, DOI: 10.1080/15524256.2011.593149Helping Older Widows Rebuild Their Lives, Colleen Barros & Lee Mountain
Pages: 115-120, DOI: 10.1080/15524256.2011.593150
Peer-Reviewed Articles
An Assessment of Hospice Bereavement Programs for Hispanics
Pablo Arriaza, Shadi S. Martin & Ellen L. Csikai
Pages: 121-138, DOI: 10.1080/15524256.2011.593151Support After Stillbirth and Its Effect on Parental Grief Over Time
Kerstin Erlandsson, Karin Säflund, Regina Wredling & Ingela Rådestad
Pages: 139-152, DOI: 10.1080/15524256.2011.593152A Qualitative Study of Advice From Bereaved Parents and Siblings
Amanda L. Thompson, Kimberly S. Miller, Maru Barrera, Betty Davies, Terrah L. Foster, Mary Jo Gilmer, Nancy Hogan, Kathryn Vannatta & Cynthia A. Gerhardt
Pages: 153-172, DOI: 10.1080/15524256.2011.593153Perceived Self-Competency Among the Recently Bereaved
Rebecca L. Utz, Dale A. Lund, Michael S. Caserta & Brian deVries
Pages: 173-194, DOI: 10.1080/15524256.2011.593154Providing Support at Time of Death From Cancer: Results of a 5-Year Post-Bereavement Group Study
Paul G. Clark, Drucilla S. Brethwaite & Sabine Gnesdiloff
Pages: 195-215, DOI: 10.1080/15524256.2011.593156Risks for Complicated Grief in Family Caregivers
Angela Ghesquiere, Yamile M. Martí Haidar & M. Katherine Shear
Pages: 216-240, DOI: 10.1080/15524256.2011.593158Disoriented Grief: A Lens Through Which to View the Experience of Katrina Evacuees
Pamela A. Malone, Elizabeth C. Pomeroy & Barbara L. Jones
Pages: 241-262, DOI: 10.1080/15524256.2011.593159Bereavement, Cognitive-Emotional Processing, and Coping With the Loss: A Study of Indian and Japanese Students
Braj Bhushan, Surender Kumar & Susumu Harizuka
Pages: 263-280
DOI: 10.1080/15524256.2011.593160
Remembering 9/11 and Reviewing the Film “From the Ground Up”
Often palliative care professionals ask, “What does 9/11 have to do with hospice and palliative care?” As many of you know, I directed an intervention with families of firefighters who were killed in the World Trade Center attacks, following many of these families over the past 10 years. We have published three book chapters on the topic and one article in a palliative care journal that describes the intervention and the knowledge we developed from the families’ experiences. See FDNY Crisis Counseling and Grief and Bereavement in Contemporary Culture. Our 9/11 intervention with the FDNY was preceded by a clinical trial of a family-focused intervention at Memorial Sloan Kettering with families in which one parent was terminally ill with cancer. In this cancer related intervention, we provided parent guidance to help families prepare for the loss of a parent, following up afterward for one year. These two interventions have given us research and practice experience with both expected loss and sudden traumatic loss. In this blog I wanted to share with you a few of our “lessons learned” about the similarities and differences between the two.
A film I recently reviewed, “From the Ground Up,” made by five FDNY widows, beautifully illustrates three important features of the widows’ experiences after the WTC attacks. I recommend it for learning and for teaching. The film will be publicly release next week. See a description at the end of this post.
First, the widows describe how the chaos, confusion, and complexity of the early hours, days, and weeks following the tragedy lengthened the time required for them and their children to actualize and accept the loss. They provide helpful details about how difficult it was to acknowledge the loss, to admit that it had in fact occurred, though logically they understood what had happened. The inability to find remains for many, the gruesome circumstances when remains were found, the ambiguity of the situation, and the catastrophic totally unimaginable destruction and dimensions of the disaster (nearly 3,000 died) made that first step in mourning difficult and time consuming. So, even though we began with the families at six months after the World Trade Center attacks, they were still experiencing great shock amidst their grief and horror. At the same time and in parallel with grief, they were getting about the business of being effective single parents to grieving children. The delay was caused by these external conditions that required much more time for internal adaptation. This evidence challenges some recent bereavement research that suggests timelines like six months for grief recovery. While researchers acknowledge they are not studying traumatic loss (e.g., one of the most widely received bereavement studies focuses on samples of spousal loss from illness in older adult widows and widowers), mental health practitioners can inappropriately apply such timelines to other ages and death circumstances.
The impact of concurrent and cumulative stresses are not to be underestimated in terms of the timing and complexity of the process required to adapt to them. We know that when a loss is expected from illness, much of the acceptance of the reality of loss can occur in family members before the death actually occurs, even in children and certainly adolescents. In fact, our cancer studies showed that family members experienced some relief after a long and arduous illness process. Although the death of a family member from illness can have traumatic aspects, the illness provides opportunities for families to prepare for the loss in their day-to-day lives by absorbing and integrating information in small doses over time. This encourages palliative social work to make use of the preparatory time in illness to foster communication and normalization of family members’ experiences as they may enter more fully into the grieving process long before the patient’s death.
Second, the perspective of the widows in the film 10 years after the attacks highlights the fact that some losses you never really get over, but you do learn to live with them. It was instructive and helpful that, although it has been 10 years since that catastrophic loss, they became tearful and experienced anew the sadness of that event and its impact on their family. I myself cried on seeing their pain and remembering their profound losses. Yet they spoke with remarkable conviction and strength about their determination not to live their lives in these “dark spaces” but to honor their husbands’ sacrifices by living a productive and generous life helping others as well as themselves. This challenges the notion that such emotion after 10 years is inappropriate or necessarily an example of pathology. It seemed rather an accommodation to the reality of a profound loss that was shared by so many people and had such an enormous impact on their families and indeed on all of us.
Third, the movie illustrates how a productive, full, generous, and joyous life can coexist with experiencing the pain of profound loss. It’s not either/or. One of the widows talks about how pleased she is that she can now feel sadness about the losses of others and share in their happiness as well. All described efforts to honor the loss of their husbands through helping others. These two processes can operate in tandem. In communicating with some of the FDNY families leading up to the 10th anniversary, I have been enormously impressed and gratified by their continuing ability to integrate this experience, inventively solve the problems it has created in their lives and develop a satisfying and productive way forward for themselves and their children.
On this important anniversary we all experience sadness and many thoughts and emotions about that catastrophic event. It brings up different memories for each of us. But this film helps us to celebrate the resilience of the human spirit and appreciate the healing power of community of which we are an integral part. We help folks walk through these enormously challenging situations, experience and learn from them, and turn again to life.
This is an excellent film that provides important insights into the grief process following sudden catastrophic loss.
FROM THE GROUND UP: 10 Years After 9/11
“The brave are those who see imminent danger and still walk into it.” That’s how Maureen Fanning, widow of NY Firefighter, Captain Jack Fanning, describes the selfless sacrifice the FDNY made on September 11, 2001. 343 New York City firefighters died in the terrorist attack on the World Trade Center. The bravest of the brave; they were fathers, sons, brothers, and most were husbands.
“FROM THE GROUND UP: 10 Years After 9/11″ is a tribute to those people, telling the story of five widows of FDNY firefighters, and celebrating the myriad contributions these 9/11 families continue to make to their communities as a way to honor lost loved ones. It is the story of trying to make sense of madness, of comforting their children and mourning their losses while the world watches. It’s the journey, taking two steps forward and one step back, through tears, depression and laughter, to triumph through tragedy.
By Beth & George Gage, 31 minutes. More details plus a trailer are at http://www.gageandgageproductions.com/legacy_911.html
Register Now for September Webinar: Cultural Proficiency in Care at the End of Life
Cultural Proficiency in Care at the End of Life
A SWHPN Webinar
with Karen Bullock, PhD, LCSW
Karen Bullock
Tuesday, September 27, 2011
1:00-2:00 PM Eastern
This webinar will explore:
- How cultural diversity can create variation in patients’ values, family structures and functioning
- The importance of cultural competency and proficiency through standards of care and understanding socio-demographic factors that define culture
- Applying cultural values and patterns to practice in order to develop care plans for patients that best address the needs of specific populations
Registration is $15 for SWHPN Members and $45 for nonmembers.After registering you will receive a confirmation email containing instructions for joining the webinar.
Hear from the Experts on the SWHPN Discussion Forum
This month on the SWHPN member discussion forum, SWHPN members are reading posts from Karen Bullock on Cultural Proficiency in End-of-Life Care. Karen is Associate Professor at North Carolina State University, Department of Social Work. She is a John A. Hartford Faculty Scholar in Geriatric Social Work and received a Social Work Leadership Development Award from the Open Society Institute’s Project on Death in America. Her professional interests are health care disparities and cultural competence in the delivery of mental health service and clinical practice with individuals, couples, and families. She has published and presented extensively, holds a research and clinical appointment at Hartford Hospital and serves on the board of SWHPN, the NASW National Committee on Race and Ethnic Relations (NCORED) and the CSWE Council on Leadership Institute (CLD).
This topic will explore:
- How cultural diversity can create variation in patients’ values, family structures and functioning
- The importance of cultural competency and proficiency through standards of care and understanding socio-demographic factors that define culture
- Applying cultural values and patterns to practice in order to develop care plans for patients that best address the needs of specific populations
We want to hear from you. Not a member? Join now.
During July, SWHPN members heard from Deborah Waldrop onDecision Making in Advanced Illness. Waldrop is Associate Professor at the University of Buffalo School of Social Work and earned her MSW from Syracuse University and her PhD together with a certificate in Gerontology from Oklohoma State University. Prior to her academic appointment, she spent 20 years as a social worker in various health care settings. Waldrop now conducts research to facilitate change in end-of-life care and help older people and their families faced with difficult decisions in some of the most vulnerable moments of life.
Posts in July focused on:
- An overview of decision making in current health care settings.
- Current resources in and implications of decision making for practitioners, policy makers and researchers.
- Factors that influence decision making, including familial relationships, symptom advancement throughout the course of an illness, access to care, age, lethality, comorbid conditions and available treatment.
Coming this year in the Hear from the Experts Series:
September—Palliative Care & Dementia, Sara Sanders
October—Bereavement, Annie Banks
November—Spirituality & Palliative Care, Shirley Otis-Green
December—Mentoring, Barbara Head
Share your thoughts..