Nancy A Contro1, Judith Larson, Sarah Scofield, Barbara Sourkes, Harvey J Cohen. 1. Pediatric Palliative Care Program, Lucile Salter Packard Children's Hospital at Stanford, Stanford University Medical Center, 725 Welch Rd, Palo Alto, CA 94304, USA. nancy.contro@medcenter.stanford.edu
Abstract
BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. RESULTS: Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. CONCLUSIONS: Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.
BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. RESULTS: Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. CONCLUSIONS: Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.
Authors: Arsenia M Asuncion; Consuelo Cagande; Sherry Schlagle; Barbara McCarty; Krystal Hunter; Barry Milcarek; Greg Staman; Shonola Da Silva; Dixie Fisher; William Graessle Journal: J Grad Med Educ Date: 2013-09
Authors: Katharine E Brock; Harvey J Cohen; Barbara M Sourkes; Julie J Good; Louis P Halamek Journal: J Palliat Med Date: 2017-04-24 Impact factor: 2.947
Authors: Amii C Steele; Julia Kaal; Amanda L Thompson; Maru Barrera; Bruce E Compas; Betty Davies; Diane L Fairclough; Terrah L Foster; Mary Jo Gilmer; Nancy Hogan; Kathryn Vannatta; Cynthia A Gerhardt Journal: J Pediatr Hematol Oncol Date: 2013-05 Impact factor: 1.289