On March 25, 2011, the Wurzweiler School of Social Work and the Social Work Hospice & Palliative Care Network (SWHPN) co-hosted Innovations in Palliative Care Social Work: Emerging Models, Effective Strategies. The conference was also co-sponsored by Columbia’s and New York University’s Schools of Social Work. Attended by approximately 185 students and professionals, the conference featured keynote addresses by Dame Barbara Monroe, Executive Director of St. Christopher’s Hospice in London, and award winning health columnist and author Jane Brody. Panelists included experts in hospital and community-based palliative social work and psychosocial care for patients and families. The conference was directed by Gary L. Stein, JD, MSW, Associate Professor at Wurzweiler; and Grace Christ, Ph.D., Professor at Columbia University School of Social Work. Drs. Stein and Christ are Vice Chair and Chair, respectively, of the Social Work Hospice and Palliative Care Network.
This conference, Wurzweiler’s second major palliative care conference co-sponsored with SWHPN, is an important part of Wurzweiler’s growing commitment to palliative social work. Dr. Stein has introduced a new palliative social work course this spring as part of Wurzweiler’s new Aging Certificate Program. The school has a new partnership with St. Christopher’s Hospice in London as a field site for international Block students, and will place the first student there this coming fall. For the past four years, Drs. Stein and Christ have co-directed SWHPN’s annual social work preconference at the American Academy of Hospice and Palliative Medicine’s annual meeting, including this past March in Vancouver. And on April 8th, Dr. Stein was featured on a keynote panel responding to Dr. Diane Meier, internationally renowned palliative care physician and director of Mount Sinai Medical Center’s Center to Advance Palliative Care.
Comparing US and UK Care for the Dying
Morning keynote speaker Dame Barbara Monroe of St. Christopher’s Hospice in London presented her model of Hospice as a Hub, which is being implemented in diverse London communities to provide improved access to care for patients at the end of life. Monroe, who succeeded late hospice pioneer Dame Sicely Saunders as executive director of St. Christopher’s, highlighted the differences in care for the dying in the UK and the US.
The UK recently ranked 1st in quality of care for the dying, while the US and Canada tied at 9th place. As in the US, the UK system has what Monroe called “shameful disparities,” where the “wealthier are healthier.” Poor, geographically dispersed families are likely to die seven years younger than others. Another similarity is in the large number of deaths in hospitals that could have occurred in home settings. In the UK, says Monroe, approximately 40% of patients who died in the hospital did not have a medical need to be there and could have been looked after at home.
This role of social work is evident in Monroe’s business model of Hospice as a Hub to do more for less by providing quality cost-effective and accessible care, supporting the development of a competent and confident workforce, and spearheading efforts to change public attitude. Through this model, St. Christopher’s has trained over 100 care homes (day care and residential), leading to a 20% increase in the number of deaths in care homes rather than hospitals. They have created a triage phone service out of their in-patient unit to allow for additional consultation. Music and art therapists are sent to homes and offer training for home caregivers and volunteers. Through the Schools Project, St. Christopher’s has connected children with patients in hospice over the last five years for interactive conversation, art and music to improve care for patients and give youth a new understanding of death, a key component of culture change.
Monroe continually stressed the need for a greater understanding of the social work role in the UK, where public opinion predominantly regards social workers with disdain and fear. A study showed that UK residents do recognize the value of social work care once they receive it, but Monroe credited the US social work profession with greater success in encouraging leadership, education and research.
“Social workers are ideally placed to look at how organizations are run. We understand about ambiguity and uncertainty in ways that no one else does,” said Monroe. “We need to live until we die by talking about death. There is a time to die and a need for courageous conversations. That is the job of social workers,” she concluded.
Innovative Psychosocial Approaches to Addressing Pain, Distress, and Suffering Among Patients and Families
Barbara Jones, Associate Professor at the University of Texas-Austin School of Social Work presented on the unique issues that arise in care for children and the critical role of social workers in facilitating difficult conversations on treatment and ethical decisions. The social worker has a global role as a counselor and advocate, said Jones, but not enough attention is paid to education and training, despite many recent advances to incorporate end-of-life and bereavement classes in social work schools. Large caseloads, time constraints, lack of training, misinterpretation of role and interprofessional conflict, she said, are some of the barriers social workers face in providing optimal care to children and families. Jones urged social workers to enforce their role in psychosocial assessment, crisis intervention, cultural awareness and spirituality conversations and to act as companions, guides, interdisciplinary team members, resource brokers, ethical consultants, communicators and coordinators.
Jeanne Dennis, Senior Vice-President of Visiting Nurse Service of New York (VNSNY) Hospice Care, focused her experience in elder care on the hospice model to relieve suffering and pain at the end of life. She laid out the history of the patient and family centered hospice care model, developed in the early 1980’s and designed to be practiced across settings. Dennis stressed the need for a “transdisciplinary” team that understands each other’s roles. She harkened back to the monumental introduction of the hospice Medicare benefit in 1982, supported by both sides of US politics, which in the current political context could not be imagined. This allowed for a flat daily rate for health care providers to give “all components of care” necessary for the patient and family’s experience. Dennis described the important work of VNSNY in increasing access to palliative care for some of the most disadvantaged populations of New York City over the last decade and in teaching community-based organizations about palliative care. Hospice utilization in New York City is at 13%, far behind the 27.6% utilization in New York State and 40% utilization in the rest of the US, despite tremendous services being provided by VNSNY and other agencies. Dennis attributes this to fear of death, denial of the meaning of loss, and a “stiff-upper-lip culture.”
Palliative Social Work in Hospital Settings: Strategies for Interprofessional Collaboration, Education and Outreach
Jane Knowles, Clinical Social Worker at Mount Sinai School of Medicine, and Lauren M. Zavier, Clinical Social Worker at New York University Langone Medical Center, enlightened participants on the role social workers play consulting in hospital palliative care.
In both settings, the presenters drew attention to the fact that the social work role as a palliative care consult is often misunderstood by other team members and interdisciplinary and social work colleagues. Knowles and Zavier presented the specific skill set needed for palliative care social work, including knowledge of the psychosocial impact of mourning, anxiety, advance directives and other aspects of care to relieve suffering while focusing on the family as the unit of care. Both emphasized the need for a collaboration model and the difficulties in implementing such a model between professions in a high-stress hospital work environment. The non-traditional role of social workers as palliative care consults, said the presenters, is often coupled with unclear parameters and intense but rewarding work. Zavier and Knowles expressed the importance of triage to determine which patients are most in need of services, education to ensure that other disciplines understand each other’s roles, and self care to combat isolation and fatigue.
Jane Brody’s Perspective as a Family Member
The day culminated in an afternoon keynote by Jane Brody, award winning New York Times and syndicated journalist and author of The Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally and Emotionally for the End of Life (Random House).
Brody shared her own personal experience coping with her husband’s terminal lung cancer diagnosis, navigating the health care system and following the advance care directives laid out in his living will.
In a manner consistent with the colorful wit her readers enjoy from her newspaper columns, Brody stressed the importance of advance care planning, assigning an agent or proxy to carry out one’s wishes and communicating and coordinating care with hospital and hospice staff. Her testament to her own experience made for a provocative but necessary dialogue about the role of social workers in palliative care teams. Social workers need to advocate for the psychosocial care they can provide and define their role as supports and resources of information and counseling for patients and families and as liaisons between interdisciplinary palliative care team members.
Speaking from the perspective of the “educated public,” Brody said that all Americans have the potential to make things better. More than three quarters of Americans believe that palliative care and end of life should be public discourse and top priority. More than 70% believe that quality of life is more important than quantity of life at the end, and a mere 23% believe that it is important to extend life through every possible medical intervention. Despite these staggering statistics, millions of Americans have not said to anyone how they want their lives to end. “Death panels,” said Brody, should have been labeled “life panels,” because “doctors don’t get paid for treating dead patients.”
“I hope that everyone will follow our example and realize that, sooner or later, life must end,” said Brody, attesting to her personal experience adhering to her husband’s advance directives.