Prenatal and Neonatal Palliative Care
37 Prenatal and Neonatal Palliative Care Renee Boss, Karen Kavanaugh, Kathie Kobler Having the baby was a surreal experience; it was entering a world of unknowns and uncertainties. Would he…
Children’s Voices: The Experience of Patients and Their Siblings
3 Children’s Voices The Experience of Patients and Their Siblings Anna C. Muriel, Colette Case, Barbara M. Sourkes Life is so strange. Sometimes you feel it’s like a book with…
Epidemiology and the Care of Children with Complex Conditions
2 Epidemiology and the Care of Children with Complex Conditions Chris Feudtner, Kari Hexem, Mary T. Rourke The medical art consists in three things — The disease, the patient, and…
Understanding the Illness Experience and Providing Anticipatory Guidance
4 Understanding the Illness Experience and Providing Anticipatory Guidance Javier R. Kane, Marsha Joselow, Janet Duncan Matthew was a red-haired little boy suffering from congenital microvillus inclusion disease, an autosomal…
Anticipatory Grief and Bereavement
5 Anticipatory Grief and Bereavement Nancy Contro, Ulrika Kreicbergs, Reverend Wilma J. Reichard, Barbara M. Sourkes I didn’t know what ‘metachromatic leukodystrophy’ meant. I asked for an explanation and when…
Sleep and Insomnia
30 Sleep and Insomnia Anthony Herbert, Chris Seton, Amanda Gamble Disease exists, if either sleep or watchfulness be excessive. —Hippocrates Since antiquity, sleep has been considered a time of healing,…
Integration of Therapeutic and Palliative Care in Pediatric Oncology
43 Integration of Therapeutic and Palliative Care in Pediatric Oncology Deborah A. Lafond, Brian R. Rood, Shana S. Jacobs, Gregory H. Reaman If we listen closely, children who are dying,…
Easing Distress When Death is Near
36 Easing Distress When Death is Near Joanne Wolfe Music, when soft voices die, Vibrates in the memory, Odours, when sweet violets sicken, Live within the sense they quicken. Rose…
Dermatologic Conditions and Symptom Control
35 Dermatologic Conditions and Symptom Control Kimberly A. Bower, Gerit D. Mulder, Anke Reineke, Shireen V. Guide Beauty is not in the face; beauty is light in the heart. —Kahlil…
Advanced Heart Disease
40 Advanced Heart Disease Elizabeth D. Blume, Angela Green My daughter has had heart surgery five times. Now the only option is a transplant. She was at home for a…
