A survey of parents indicates that they not only want the best medical care, but also need spiritual care when facing the death of a child. The findings, published in the September issue of Pediatrics, indicate that spiritual/religious support is helpful to many parents in making end-of-life decisions for their child, in finding meaning in their loss, and for emotional sustenance.
The study was led by Rev. Mary Robinson, MA, MDiv, of Children's Hospital Boston's Chaplaincy, and Elaine Meyer, PhD, RN, director of Children's Program to Enhance Relational and Communication Skills (PERCS), which helps clinicians practice difficult conversations with parents. They administered anonymous questionnaires to 56 parents whose children had died in one of three pediatric intensive care units (ICUs) in Boston after the parents decided to withdraw life-sustaining therapies.
The deceased children ranged in age from newborn to 18 years, and represented the full range of medical and surgical diagnoses. Parents completed the questionnaires 12 to 45 months after their child's death.
The researchers focused on five open-ended questions: 1) What was most helpful to you in getting through the time at the end of your child's life?; 2) What was least helpful?; 3) How can the hospital staff improve their communication with parents at this difficult time?; 4) What advice do you have for hospital staff members in helping parents during this difficult time?; and 5) What advice do you have for other parents who are facing a similar situation?
Although not asked explicitly about religion or spirituality, 73 percent of parents offered religious/spiritual responses when describing what had been most helpful to them and what advice they would give other parents. Four spiritual/religious themes emerged:
Parents also emphasized being guided by insight and wisdom, inner values, and spiritual virtues such as hope, trust, and love.
Of note, parents wrote much more freely about spiritual/religious themes when offering advice to other parents than when offering advice to hospital staff.
"Some parents may be reluctant to share their spirituality without being invited, because they fear it may be misunderstood or judged in the scientific culture of the hospital," Meyer notes. "But many parents experience their child's death as a spiritual journey, not only as a medical event."
The researchers call on hospitals to be explicitly sensitive to parents' spiritual and religious needs. Specific suggestions include:
For more on Children's Program to Enhance Relational and Communication Skills (PERCS), visit: www.childrenshospital.org/percs .
For more on the Chaplaincy at Children's, visit: www.childrenshospital.org/patientsfamilies/Site1393/mainpageS1393P4sublevel54.html .
For more on Children's Pediatric Advanced Care Team, which offers end-of-life and palliative care, visit: www.childrenshospital.org/clinicalservices/Site1854/mainpageS1854P0.html and www.childrenshospital.org/clinicalservices/Site1854/printerfriendlypageS1854P4.html .
Children's Hospital Boston is the nation's premier pediatric medical center. Founded in 1869 as a 20-bed hospital for children, today it is a 347-bed comprehensive center for pediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. More than 100 outpatient specialty clinics are located at Children's. Children's Hospital Boston is the primary pediatric teaching affiliate of Harvard Medical School, home to the world's leading pediatric research enterprise, and the largest provider of health care to the children of Massachusetts. For more information about the hospital visit: www.childrenshospital.org/newsroom .
PEDIATRICS