Palliative care is traditionally focused on care for the terminally ill, but scholars at the Johns Hopkins Berman Institute of Bioethics are aiming to bring the principles and comfort of palliative care to pediatric patients suffering from chronic illnesses. A curriculum released this week guides health care 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 and Duchenne muscular dystrophy.
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, co-principal investigator on the project.
The curriculum provides health care institutions with evidence-based curricular materials on pediatric palliative care concepts, with flexibility for training interdisciplinary health care workers with all levels of pediatric palliative care knowledge and experience. The 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," says Gail Geller, 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 been honored 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 health care 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 sickle cell disease. "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."