A multiagency protocol for responding to sudden unexpected death in infancy: descriptive study

Introduction

A working party set up by the Royal Colleges of Pathologists and of Paediatrics and Child Health has recommended introducing a national multiagency protocol for the management and investigation of sudden and unexpected deaths in infancy.1

In 1999, a protocol embodying many of the features now recommended for the national protocol was introduced in Sussex, England.2

This report on how such a protocol works in practice and its findings have implications for the implementation of a national protocol.

Participants, methods, and results

I collected anonymised data from coroners' records on postmortem investigations and cause of death of all infants who were reported to have died suddenly and unexpectedly in Sussex (total population 1 500 000, 150 000 aged under 15) in the three years 2000-2.

I used postal questionnaire and semistructured interview to get information about the working of the protocol from professionals in the seven relevant disciplines and from parents (subject to their general practitioners' consent).

I identified 29 infants, aged 3 days to 8 months; adequate records for analysis were available on all but one. Eight of the 29 deaths were attributed to a specific natural cause, 16 to sudden and unexpected death in infancy or to sudden infant death syndrome, one to unintentional overlay (suffocation), and two to unnatural causes; two were classified as unascertained (table).

Implementation of the protocol varied considerably. The ambulance service had not implemented it. In accordance with the protocol, coroners or their officers sometimes refused permission for pathology samples to be taken immediately but could not always readily be contacted out of hours. Interagency discussions were held in all cases, but relevant professionals were not always invited to contribute. Joint home visits by police and paediatricians were generally not initiated. Most paediatricians had concerns about being available at short notice, and some were unwilling to visit the home. Despite the guidelines, some also expressed uncertainty about their role. The number of police involved tended to be disproportionate and some parental feedback on police involvement was negative. Although postmortem examinations were done in all but one case by pathologists with training, or a special interest, in paediatrics, the transport of bodies to a specialist centre for autopsy contributed to delays of three or more days in investigations in 13 cases. Delays can affect results.3 Diagnoses of sudden infant death syndrome sudden and unexpected deaths in infancy were made without consistent investigations.

Comment

The implementation of a multiagency protocol for managing sudden and unexpected deaths in childhood had serious deficiencies. These may have arisen from a lack of overall leadership and responsibility, failure to anticipate its implications, and non-compliance by some individuals. This occurred even though it had been drawn up in consultation with all the relevant disciplines

Although numbers were small, reflecting the rarity of these deaths, and though responses were incomplete, more than half the parents and professionals contacted responded, and coroners provided access to all relevant data. Parents provided valuable feedback on local practice; this will be useful in future evaluations.

Effective implementation of a national protocol will need strong lines of intra-agency and interagency accountability and may need statutory backing.

This article was posted on bmj.com on 13 December 2004: http://bmj.com/cgi/doi/10.1136/bmj.38323.652523.F7

Editorial by Platt