Johns Hopkins Bioethicists Have Vision of Hope For Young Patients Living With Debilitating Chronic Illness
Jo-Carolyn Goode | 11/10/2014, 11:03 a.m.
Scholars from the Johns Hopkins Berman Institute of Bioethics launch a curriculum for training diverse healthcare workers to apply palliative care principles to pediatric patients suffering from sickle cell disease and Duchenne muscular dystrophy.
Palliative care is traditionally focused on care for the terminally ill, but scholars at the Johns Hopkins Berman Institute of Bioethics are aiming to change that by bringing the principles and comfort of palliative care to pediatric patients suffering from chronic illness. A curriculum launching November 10 will guide healthcare workers in integrating the principles and practices of pediatric palliative care into their long-term care regimen.
Titled “Vision of Hope,” the curriculum uses two specific chronic conditions as case studies: sickle cell disease (SCD) and Duchenne muscular dystrophy (DMD). All content is free and publicly available at http://www.bioethicsinstitute.org/hope.
“Young people living with chronic diseases routinely confront challenges that benefit greatly from an expanded repertoire of ethically grounded palliative care practices that are holistic, attending to their emotional wellbeing, spiritual developmental and physical needs,” says Cynda Hylton Rushton, PhD, RN, FAAN, co-principal investigator on the project.
The curriculum provides healthcare institutions with evidence-based curricular materials on pediatric palliative care (PPC) concepts, with flexibility for training interdisciplinary healthcare workers, with all levels of PPC knowledge and experience. The various components include video segments, discussion questions, and interactive activities that can be used together or separately. Three formats are suggested for training sessions: in-service, workshop or a two-and-one half-day retreat.
“What makes these palliative care training programs innovative is that they are experiential, interdisciplinary and relational,” explains Gail Geller, ScD, MHS, co-principal investigator on the project. “Relational learning expands the notion of professional competence to encompass the moral realm of human relationships and experience.”
Through the use of video, the Vision of Hope curriculum provides a means to integrate the voices and experiences of patients and families throughout all aspects of the training, Geller says. Some of the film components of the Vision of Hope project have won honors as stand alone pieces, including awards from the Houston International Film & Video Festival, Cine, and the International Association of Audio Visual Communicators.
“Living with the pain and other serious medical complications of Sickle Cell Disease becomes even more frustrating and emotionally painful when healthcare providers don’t believe the patient’s reports of their pain experience,” says Carlton Haywood Jr., an investigator on the project who both researches and lives with SCD. “The Vision of Hope curriculum, and the films in particular, shed light on the impact of these added burdens on patients, and we hope to use these patient voices as tools to enact lasting changes in the quality of the care delivered to people suffering from sickle cell disease.”
“We believe the integration of palliative care into lifelong treatment of chronic conditions will give young patients hope for a life filled with what young Mattie. Stepanek called ‘heartsongs’,” Rushton says. During his short life, Mattie J. T Stepanek lived with a rare form of muscular dystrophy and inspired others as a bestselling author, poet, peace advocate, and MDA Goodwill Ambassador. His insights regarding living each day with muscular dystrophy and planning for an uncertain future were foundational to the Vision of Hope project, Rushton explains. Stepanek defined heartsongs as “gifts that reflect each person’s unique reason for being,” distinct from their health and suffering.
The Vision of Hope Project is supported by a grant (1 RC1NR011710-01) from the National Institutes of Health National Institute of Nursing Research and the Stavros Niarchos Foundation. One of the films in the curriculum, On the Edge, received additional support from the Slomo and Cindy Silvian Foundation.
For more information, http://www.bioethicsinstitute.org/hope.