Acta Pædiatrica ISSN 0803-5253

COMMENTARY

End-of-life decisions, quality of life and the newbornJohn WyattUniversity College London, London, UK

Keywords

CorrespondenceJohn Wyatt, University College London,5 University street, London WC1E 6JJ, UK.E-mail: john.wyatt@uclh.nhs.uk

Received

DOI:10.1111/j.1651-2227.2007.00349.x

Decisions about medical treatment for newborn infants atthe end of life continue to cause controversy in many coun-tries. The study of Vrakking et al. (1), in this edition, suppliesvaluable information provided by physicians reporting thedeath of an infant under the age of 1 year in both Belgiumand Netherlands. Over 50% of reported deaths followeda medical end-of-life decision, and in both countries, be-tween 5% and 10% of the deaths followed the administra-tion of drugs with the explicit intention to end life. Reasonsgiven for the end-of-life decision in these cases were approx-imately equally divided between ‘no chance of survival’ and‘extremely poor quality of future life’.

From data reported previously by the same group (2),when lethal drugs were administered to newborns in Bel-gium, the underlying diagnosis was either major intraven-tricular haemorrhage in extremely preterm infants or ma-jor congenital malformation. By contrast, in a report fromNetherlands (3), all 22 cases of neonatal euthanasia reportedto the district attorneys’ offices over a period of 7 years, in-volved ‘extremely severe forms of spina bifida’ associatedwith ‘hopeless and unbearable suffering’ and a ‘very poorquality of life’.

In the UK, the recent report of a working party of theNuffield Council on Bioethics, whilst supporting the with-holding or withdrawal of life support treatment when it ismotivated by the best interests of the baby, has ‘unreservedlyrejected’ the active ending of neonatal life (4). Similarly theprofessional guidelines of the Royal College of Paediatrics &Child Health remain opposed to ‘causing death by intendedlethal action’ (5).

The concept of ‘quality of life’ is in itself highly problem-atic (6), and the prediction of future life experience at theneonatal stage is likely to reflect medical and parental in-tuitions and prejudices rather than objective reality. Quiteapart from the moral arguments about intentional killing,

Invited commentary for Voss et al. Neurodevelopmental outcomein extremely low birth weight infants. What is the minimum age ofreliable developmental prognosis?

it is questionable whether such subjective and contestablejudgements can ever justify the active ending of a newbornlife.

A recent study of health related quality of life (HRQOL)in 460 adolescents and adults with spina bifida found thatmean scores for both physical and mental domains werewithin one SD of the control population (7). Adolescentswith spina bifida had slightly higher self ratings for ‘psycho-logical well being’ and ‘relations with friends’ than healthycontrols. Similar findings were obtained from a study of 72physically disabled adolescents in Hong Kong (8). Despiteonly 18% of the cohort being able to walk unaided, self rat-ing of ‘subjective quality of life’ was no different from that inhealthy controls.

Saigal and colleagues have recently reported a study ofHRQOL in a cohort of adults who were born with extremelylow birth weight (9). Again, despite a significant increase ina range of functional impairments, the extremely low birthweight survivors had no difference in self ratings of HRQOLwhen compared with normal birth weight controls. It seemsthat both parents and clinicians have a marked tendencyto overestimate the impact of functional impairments andrestrictions on personal well being and life satisfaction indisabled adolescents and adults. In reality there is no sim-ple relationship between neurological impairment and either‘unbearable suffering’ or ‘poor quality of life’.

The controversies about the appropriate medical man-agement of the severely impaired or extremely pretermnewborn will inevitably continue, but it is vital thatthese debates are informed by empirical data from well-designed outcome studies rather than widespread preju-dices and assumptions about the life experiences of disabledindividuals.

References

1. Vrakking AM, van der Herde A, Provoost V, Bilsen J, van derWal G, Deliens L. End-of-life decision making in neonates andinfants: comparison of the Netherlands and Belgium (Flanders).Acta Paediatr 2007; 96: 820–4.

790 C©2007 The Author/Journal Compilation C©2007 Foundation Acta Pædiatrica/Acta Pædiatrica 2007 96, pp. 790–791

Wyatt End-of-life decisions and the newborn

2. Deliens L, Mortier F, Bilsen J, Cosyns M, van der Stichele R,Vanoverloop J, et al End-of-life decision in medical practice inFlanders, Beligium; a nationwide survey. Lancet 2000; 356:1806–11.

3. Verhagen E, Sauer PJ. The Groningen protocol—euthanasia inseverely ill newborns. N Eng J Med 2005; 352: 959–62.

4. Nuffield Council on Bioethics. Critical care decisions in fetaland neonatal medicine: ethical issues. 2006.

5. Royal College of Paediatrics and Child Health. Withholding orWithdrawing Life Sustaining treatment in children: aframework for practice. 2nd ed. London: RCPCH.

6. Wyatt JS. What’s wrong with quality of life as a clinical tool?Virtual Mentor 2005.

7. Chow SMK, Lo SK, Cummins RA. Self-perceived quality of lifeof children and adolescents with physical disabilities in HongKong. Qual Life Res 2005; 14: 415–23.

8. Lemelle JL, Guillemin F, Aubert D, Guys JM, Lottman H,Lortat-Jacob S, et al Qual Life Res 2006; 15: 1481–92.

9. Saigal S, Stoskopf B, Pinelli J, Streiner D, Hoult L, Paneth N, etal. Transition of extremely low birthweight infants fromadolescence to young adulthood. Pediatrics 2006; 118:1140–8.

C©2007 The Author/Journal Compilation C©2007 Foundation Acta Pædiatrica/Acta Pædiatrica 2007 96, pp. 790–791 791