Parents' Experiences and Wishes at End of Life in Children with Spinal Muscular Atrophy Types I and II

• Published in: The Journal of pediatrics 2016-08, Vol.175, p.201-205
• Main Authors: Lövgren, Malin, RN, PhD, Sejersen, Thomas, MD, PhD, Kreicbergs, Ulrika, RN, PhD
• Format: Article
• Language: English
• Subjects: Adult; Attitude to Death; Bereavement; End-of-life care; Female; Health Care Surveys; Humans; Infant; Location of death; Male; Medicin och hälsovetenskap; Mental Health Services; Middle Aged; Neuromuscular disorders; Palliative care; Parents - psychology; Pediatrics; Professional-Family Relations; Quality Assurance, Health Care; Siblings - psychology; Social Support; Spinal Muscular Atrophies of Childhood - psychology; Spinal Muscular Atrophies of Childhood - therapy; Spinal muscular atrophy; Sweden; Terminal Care - methods; Terminal Care - psychology
• ISSN: 0022-3476; 1097-6833; 1097-6833
• DOI: 10.1016/j.jpeds.2016.04.062

Objective To explore experiences and wishes of bereaved parents concerning end-of-life care for their child with severe spinal muscular atrophy. Study design A follow-up survey was conducted in 2013 on parents of deceased Swedish children who were born between 2000 and 2010 and later diagnosed with spinal muscular atrophy type I or II (n = 48). The questions used in this study covered location of death (LoD), support from health care staff, and parents' wishes and concerns about their child's end-of-life care. Results One-half of those who had wishes about LoD (16/32) wanted their child to die at home, rather than at the hospital. All of those who wanted the child to die at the hospital had their wishes fulfilled. Among those who wanted the child to die at home, 10 of 16 got their wish. Among parents who talked with a physician about how they wanted their child to pass away (n = 26), all but 2 had their wishes fulfilled. Thirty-six parents (75%) reported that their child had siblings: 12 reported that the sibling was too young for professional psychological support, and only 4 of the remaining 24 siblings received such support after the death of their brother or sister. Conclusions Parents' communication with the physician about their wishes and concerns regarding their child's end-of-life care and preferred LoD contributed to their wishes being fulfilled. The wish of hospital death was fulfilled more often than the wish of home deaths. A vast majority of siblings did not receive psychological support after death of their brother or sister.