Quality of Life and Myelomeningocele: An Ethical and Evidence-Based Analysis of the Groningen Protocol

Abstract

In 2005, a group of pediatricians at the University Medical Center in Groningen, The Netherlands, published the Groningen Protocol (GP) for Euthanasia in Newborns. This protocol is a set of guidelines devised in 2001 to clarify and facilitate the assessment of clinically stable neonates deemed to be in unbearable suffering for whom the prognosis is felt to be hopeless. At the time of publication, the GP had been in use for 7 years, and 22 patients, all with diagnosed myelomeningocele (MMC), had met the selection criteria for euthanasia by lethal injection. MMC is the most common neurological congenital anomaly, affecting approximately 300,000 newborns yearly worldwide. Neurosurgeons have a unique perspective on this disease and therefore an important voice, given the significant role they have in caring for these patients at all stages of their lives. This paper reviews the principal ethical arguments presented to date in the literature regarding the GP. It also provides an evidence-based critique of the GP in light of quality-of-life studies addressing adults with MMC, and ascertains whether or not the GP meets the criteria for an evidence-based guideline.

Essential features of Chiari II malformation in MR imaging: an interobserver reliability study—part 1

“…On the one hand, the discussion on selective treatment of severely affected newborn infants is still ongoing [21]. On the other hand, fetal imaging and prenatal surgery are becoming more important every day.…”

Quality of life of very young spina bifida patients after initial surgical treatment

“…This protocol describes the criteria for euthanasia in newborns as per their expected QOL. It emphasizes on non-selective management of newborns with SB irrespective of the severity of disease and associated complications [16]. Snodgrass et al emphasized on early urologic management of these children during infancy and its potential impact on long-term outcomes for preserving renal function and achieving urinary continence.…”

Commentary on ‘Quality of Life and Myelomeningocele: An Ethical and Evidence-Based Analysis of the Groningen Protocol’ by Sean Barry, Pediatr Neurosurg 2010;46:409–414

“…Strikingly little has appeared in the neurosurgery literature [11] despite the vital role played by pediatric neurosurgeons in the care of these infants. For this, Sean Barry [12] is to be commended, as it is important to raise our level of awareness of protocols such as this which have such a profound effect on the management of these babies.…”