Publication
Incorporating bereaved parents as facilitators and educators in teaching principles of palliative and end-of-life care
Snaman J, Kaye E, Levine D, Clark L, Wilcox R, Cunningham M, Baker J · Journal of Pain and Symptom Management · 2018
Objectives * Identify innovative ways to incorporate highly trained bereaved parent volunteers into educational opportunities in palliative care for health care providers and staff. * Describe the process of implementation and content of palliative care educational forums facilitated by bereaved parent educators. * Conduct training, support, and debriefing that is provided to bereaved parent volunteer educators and facilitators involved in staff education on palliative and end-of-life care. High quality medical education for all members of the clinical and supportive care team requires training in principles of palliative and end-of-life care, including symptom management, empathic communication, ethical considerations, and provision of support around the time of death and throughout bereavement. We have demonstrated that experiences of bereaved parents can augment and inform palliative care educational curricula in uniquely powerful and valuable ways. We present a novel and innovative palliative care training program facilitated by bereaved parents of children cared for at our institution, who now serve as volunteer educators in palliative care didactic forums for clinical staff. Current and ongoing educational events include quarterly offerings of the End of Life Nursing Education Consortium (ELNEC), and Quality of Life Seminars, two independent one-day training programs for nurses, support staff, advanced practice nurses, and physicians. These educational sessions utilize small groups, facilitated by a bereaved parent volunteer and a palliative care team member, to augment didactic teaching, encourage interactive discussion and questions, and allow practice in palliative care skills. Bereaved parents also function as facilitators and educators in intensive and interactive communication workshops for medical trainees and collaborate with palliative care physicians to teach communication skills in national forums in which they provide communication training and discuss fundamentals of bereavement support. Unquestionably, appropriate selection and training of bereaved parent educators is essential to programmatic success. Parents receive support through scheduled debriefings following each event, with additional one-on-one support provided as needed. Feedback from bereaved parent participants demonstrate unanimous perception of teaching opportunities as meaningful avenues to continue longitudinal relationships with the institution and create lasting legacies to honor their children. Our uniquely innovative integration of bereaved parents in education around palliative and end-of-life care is a model which we have observed to be an effective and beneficial intervention for both staff and parents.
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