Title: Assistant Professor of Practice
University: University of Akron
Email: bch25@zips.uakron.edu
Twitter: ua_mr_harrell
Website: N/A
Description of Work:
As a faculty member at The University of Akron’s Department of English, I teach First-year English Composition. In 2017, I am piloting a program which teaches composition to the health professions, focusing on the writing and rhetoric of health. My writing classes include writing about death and dying and writing illness and literacy narratives. My research centers on best practices of teaching English composition and writing for a diverse student population, which includes medical narrative and rhetoric. I am active in the field of medical ethics and the humanities as a member of the Executive Board of Trustees of the Bioethics Network of Ohio, since 2013. At Akron Children’s Hospital, I am part of a medical simulation team that contributes to medical education of residents, fellows, and nurse practitioners, as a standardized patient/family member, evaluator, and discussant on medical rhetoric as applied to clinical situations. In 2017-18, the plan (upon the Board of Trustees approval) is to have graduate faculty status in the College of Graduate Studies at the Northeast Ohio Medical University, medical rhetoric, as well as guest lecturing in the six-credit survey course, focusing on illness narrative. Currently, I am working on understanding and creating sustainability in health care.
Symposium Submission:
Sustainability of Pediatric Palliative Care Teams in Inpatient Practice to Prevent Burnout and Fatigue
In 2000, the AAP published the Committee on Bioethics and Committee on Hospital Care: Palliative Care for Children. In that, they recommended that programs that are created have respect for the dignity of patients and family, have access to competent and compassionate palliative care, availability of adequate support for all caregivers, improved professional and social support for pediatric palliative care caregivers, and providers skilled in all aspects of pediatric palliative care are always available for patients. In addition, this document spelled out the well-known goal for pediatric palliative care as: add life to the child’s years, not simply years to the child’s life. While the work of the last two decades has done a fine job of creating dignified, compassionate, and competent teams of professionals throughout the field, the adequate support for all caregivers seems to have been secondary to patient care. This paper will address this needed support for the caregivers as being the primary need in the field of pediatric palliative care, and only when that support is given can sustainability be obtained.
In January of 2008, a task force was convened by the Honorable Estelle B.
Richman, Secretary of Pennsylvania’s Department of Public Welfare, forming the State of Pennsylvania’s Pediatric Palliative and Hospice Care (PPHC) which effectively worked to “improve pediatric palliative care and end-of-life care services to children with life-limiting conditions and their families” (Hawley, 2010, p. 61). This group came up with five recommendations to improving pediatric palliative care and hospice in Pennsylvania. These recommendations dealt with establishing a medical director’s office for the state, establishing a statewide coalition of family members and professionals advocating for the needs of patients and their families, establishing a statewide network of regional centers of expertise to provide leadership regarding clinical consultation, family advocacy, education, professional development of clinicians, and research, create funding, and improve the quality of services in the field. (Hawley, p. 65). This study, and others similar, shows a large hole in the field: while supporting the patients and the field in general, is a major part of the work that is necessary, if those doing the work in the trenches are not supported, then all of these recommendations mean little.
Day after day, physicians, nurse practitioners, physician assistants, nurses, social workers, bereavement specialists, child-life specialists, office managers, and chaplains are tasked with managing the complex care of pediatric patients and their families with acute and chronic life-limiting and life-threatening illnesses. Most of the patients have specific care plans so complicated that it takes the whole team to manage them and address their needs. Being able to sustain the daily energy it takes to work in this field is difficult. While many hospitals encourage the use of retreats, self-care days, multiple weeks of vacation time, and weekly meetings to palliate each other, the trauma that many pediatric palliative care team members encounter on a daily basis makes it difficult to sustain the work for an extended career. Teams are constantly changing as professionals begin to burn out. Perhaps the best model of care for energy sustainability is large teams, with multiple physicians, NPs, PAs, fellows (at a teaching hospital), and support staff that embrace the “many hands make light work” cliché, or it is an issue that is rooted much deeper based on individual support of the care-givers. Being able to sustain the energy of the team, large or small, and the individuals, is essential to providing quality palliative care that is necessary for a hospital setting.
There are several service models for inpatient palliative care and hospice, all of which have ways of sustaining the practice. One thing is similar for all of the models, communication and collaboration is essential to delivering quality care. Once communication breaks down, and collaboration begins to falter, the team cannot sustain itself. Collaboration between all of the different cogs in the palliative care wheel is essential to providing a strong system of care and sustainability, yet according to Remke, S.S. and Schermer M.M. (2012), there is little training on how all must work together, thus creating friction in the workplace. They write, “The ‘care and feeding’ of the team is an essential program activity that requires planning, facilitation, and resources” (p. 287). This provides a high quality of care as well as sustaining the life of the team. Hall (2005) posits that a status-equal model between the various team members is essential for collaborative practice. Blacker and Deveau (2011) write, “All professionals working in palliative care must have skills in managing the common psychosocial concerns that arise, including identifying those most at risk for anxiety and depression and other serious mental health concerns, and providing support and comfort in moments of despair” (p. 241). In order to create the best environment for stability in the team, these psychosocial concerns should not only be assessed for the patient and their family. It should also be assessed in fellow team members. A team model of support and comfort has a place in the sustainability of a team.
A specific service model to consider is Suzanne Toce and Mary Ann Collins’s (2003) FOOTPRINTSSM which is designed to help children with life threatening conditions and their families live well through the end of life, based on an advanced care planning and care coordination service model (p. 990). Based on the 2000 AAP statement, the program is described as” having three components: a clinical program of advanced care planning and care coordination, research/evaluation, and education” (p. 991). This model has shown to be effective over the last fifteen years for patient care, with advanced planning being a major component in most teams through care plans and by adding team support, thereby the AAP recommendation can be fully realized.
In 2009, D. Brad Wright published, Care in the Country: A Historical Case Study of Long-Term Sustainability in 4 Rural Health Centers. He writes, “If young doctors can be enticed into such programs and nurtured so that they remain, they might help to alleviate America’s serious health workforce shortages in rural areas” (p. 1618). We propose a paper that will provide pediatric palliative care teams a model to nurture their team members so that they remain productive in the field. It is only when the providers are cared for can this work be sustained over a career.
References
American Academy of Pediatrics. Committee on bioethics and committee on hospital care: Palliative care for children. Pediatrics 2000, 106. 351–357.
Blacker, S., & Deveau, C. (2010). Social work and interprofessional collaboration in palliative care. Progress in Palliative Care, 18(S), 237-243.
Collins, M. A., & Toce, S. (2003). The FOOTPRINTSSM model of pediatric palliative care. Journal of Palliative Medicine, 6(6), 989-1000. doi:10.1089/109662103322654910
Hall, P. (2005). Interprofessional teamwork: professional cultures as barriers. Journal of Interprofessional Care, 19188-196.
Hawley, B. (2010). Pediatric palliative and hospice care: Pennsylvania’s model of collaboration. pediatric nursing, 36(1), 61-67.
Remke, S., & Schermer, M. (2012). Team collaboration in pediatric palliative care. Journal of Social Work in End-Of-Life & Palliative Care, 8(4), 286-296.
Wright, D. B. (2009). Care in the country: A historical case study of long-term sustainability in four rural health centers. American Journal of Public Health, 99(9), 1612-1618.